Exploring the work and organisation of local Healthwatch in England: a mixed-methods ethnographic study

Actor network theory

Originating in science and technology studies, ANT focuses on the role of mutually influencing relations between various human and institutional actors, as well as the sociomaterial contexts (e.g. objects, documents, buildings, meetings, technologies, data, policies, strategies, contracts, ideas) in which they operate (Box 2). 32,33

In studies of health-care service and delivery, ANT has typically been advanced as a framework for investigating health-care organisations and technologies,34–36 and it has been applied successfully in other NIHR-funded studies. 37–40 For instance, three of the authors of this report – Amit Desai, Giulia Zoccatelli and Glenn Robert – were recently involved in a NIHR-funded project that used ANT to investigate and optimise the use of patient experience data in acute NHS trusts. 40 This work explored the mutually influencing relationship between different forms of patient experience data and technologies and the people and institutions that use (or fail to use) them to improve the quality of patient care. 40–42 Thinking with ANT meant that we built ethnographic descriptions of how patient experience data came to be formed in any given hospital and how these data were entangled in relationships that enabled them to act to affect improvement.

Our study of Healthwatch similarly pays attention to these ‘mutually influencing relations’ between various human and non-human actors in shaping the practices and strategies through which Healthwatch promotes patient and public voice. 43 Using ANT adds to our understanding of Healthwatch in two main ways. First, we are able to expand the range of actors beyond merely human or institutional actors, which had been the focus of previous studies,15 and this allows us to give due consideration to the ways in which relationships between Healthwatch and its local stakeholders are shaped and mediated on a daily basis by artefacts, such as organisational and governance structures, funding arrangements, institutional landscapes, data, technologies and evidence-gathering mechanisms (i.e. non-human actors) (Box 3).

As we explore in the mode of analysis (see Chapter 3), findings (see Chapters 4–7) and discussion (see Chapter 8) chapters that follow, thinking with ANT allows us to see and analyse the entanglements of which Healthwatch is a part and which shape the possibilities of its work. Therefore, for example, we trace the ways in which the health and social care institutional landscape in any given Healthwatch area of operation intersects with funding arrangements or Healthwatch organisational structure, and how these need to be considered together to understand the nature of key Healthwatch activities, such as engagement or evidence-gathering and communication.

Second, existing studies rely primarily on interviews and surveys that can provide only post hoc accounts of events. 15,27,30 Our study, although incorporating a survey and interviews, also prioritised a broadly ethnographic approach (endorsed by ANT) to capture the processual nature of relations, therefore uncovering the emergent and unexpected ways in which local Healthwatch organisations enhance patient and public voice.

By examining the nature and quality of interaction between local Healthwatch organisations and key stakeholders, as well as the non-human elements that enable such interaction, our study provides, to the best of our knowledge, the first comprehensive exploration of these hitherto largely neglected organisations.

Fieldwork at five local Healthwatch study sites

We carried out interviews, observations and documentary analyses at five purposively sampled local Healthwatch organisations over a 17-month period (August 2019 to January 2021) (see Appendix 1 for a summary of characteristics for each study site). Although the project proposal and first version of the protocol envisaged only four local Healthwatch study sites, as phase 2 developed through the involvement of the HIP, it became clear that we needed to recruit a fifth local Healthwatch site to have a sample that better reflected the variability of Healthwatch, as perceived by staff and volunteers of Healthwatch themselves.

Healthwatch Involvement Panel

The HIP was a panel of 15 local Healthwatch staff and volunteers recruited from 15 local Healthwatch organisations that were not case study sites. The HIP was conceived as a group that would help us analyse the ethnographic data from the five study-sites.

The purpose of the HIP was therefore to ensure:

• the ongoing generalisability of our findings by ensuring that local Healthwatch staff and volunteers have the chance to jointly reflect on the data presented and provide ongoing interpretation and explanation based on their own experience

• that our study outputs are meaningful to local Healthwatch staff and volunteers, therefore, improving the likelihood of beneficial change in the way in which Healthwatch currently operates

• appropriate PPI in this phase through engagement with Healthwatch volunteers.

The operation of the HIP changed substantially after the start of the COVID-19 pandemic. We adapted our approach so that the HIP functioned as a data source about local Healthwatch work during the pandemic (as opposed to a data analysis partner). This way of working deepened our engagement with individual HIP members and we were able to ensure that the three purposes listed above were achieved.

Lessons emerging from COVID-19 pandemic

National restrictions to tackle the COVID-19 pandemic were imposed in England from mid-March 2020 onwards. As we described above, face-to-face fieldwork at our study sites was no longer possible. Similarly, we could no longer convene the HIP in person or hold long meetings with them as we had pre-pandemic. With the approval of our Advisory Group, we decided to modify the protocol to adapt the operation of the HIP to these new circumstances. Our fieldwork data showed that the pandemic was highlighting and catalysing existing Healthwatch practices and relationships. Understanding Healthwatch’s role in the pandemic response, therefore, represented a new and important part of achieving our study’s aims and objectives.

Alongside our ongoing data collection from the five study sites, we used the HIP as a key source of data about the work of local Healthwatch organisations during this time. This significantly expanded the role of the HIP in our study beyond its original scope as a partner in analysing data from the study sites. In addition, using the HIP in this way allowed us to access a broader range of insights from different organisations, as well as different roles, within Healthwatch. This change in HIP structure and role helped mitigate some of the challenges of conducting online fieldwork with our existing study sites. Data collection at these sites – although ongoing and valuable – had become less time intensive, and the benefits of the ethnographic method in conducting observations and informal conversations with study participants were attenuated in an online format. Moreover, as work had moved online, HIP members were accessible regardless of geographical location.

Over three panel meetings (in April 2020, October 2020 and February 2021), we developed a model for working with the HIP (see Table 10). We carried out semistructured individual or small-group online interviews with panel members 2 or three 3 in advance of a panel meeting. These interviews were recorded and transcribed. Amit Desai and Giulia Zoccatelli analysed the transcripts together and highlighted key findings and themes. At the online HIP meeting, the study team presented key themes emerging from both these interviews and small-group discussions and from fieldwork at the five study sites. We organised a plenary discussion around prepared questions based on the initial data analysis. The online HIP meeting was video- and audio-recorded and transcribed, the chat box saved and the transcript and chat box further analysed.

Production of emerging statements of ‘good practice’

We used data from the fieldwork at the five study sites (in phase 2), from the online interviews and small-group discussions (in phase 3) and from the JIFs (in phase 4) to draft a series of statements of ‘good practice’ about the practices and strategies used by local Healthwatch organisations to collect, organise and communicate patient and public needs to key stakeholders and the contexts where they might apply and work best. The emerging list of these statements of good practice was discussed and refined through an interactive process with HIP members and the participants at the local JIFs (see Phase 4: joint interpretive forums). In the last part of this interactive process (in July 2021) we circulated via e-mail a draft list of these statements to all HIP members and asked for their insights on their generalisability and usefulness. We obtained comments from five HIP members, which were incorporated to generate the final set of statements of good practice (see Chapter 6).

Cross-site joint interpretive forum

Our first workshop was held in January 2021 and was attended by up to three representatives from all five Healthwatch study sites, as well as the study team (Table 5 shows a breakdown of JIF participants by roles in their respective local Healthwatch organisation).

The 2-hour workshop concluded the data collection at the five case study sites. The workshop aimed to allow participants to share information about key features of their Healthwatch organisation to enable discussion of early analytical themes (discussion was elicited with the aid of four deliberately provocative statements prepared by the research team based on our emerging findings) and provide a space for the presentation and discussion of preliminary findings from the study. Ahead of the workshop, we circulated a document outlining emerging themes from our analysis (see Appendix 4).

The cross-site JIF comprised three inter-related activities that were organised around a structure carefully planned to maximise participation and dialogue. These three activities were:

1. a discussion of pre-circulated Healthwatch profiles

2. a presentation of emerging themes from our fieldwork

3. a provocations activity.

We detail these activities in Appendix 3.

Local joint interpretive forums held at each Healthwatch study site

The local JIFs aimed to provide a platform for the sharing of perspectives between three broad groups of people (i.e. the study researchers, staff and officers of local Healthwatch study sites and key institutional stakeholders of these study site Healthwatch organisations). In May 2021, we held four local JIFs in total, each involving one of our study sites and their principal stakeholders, such as CCG, local authority, provider trust and VCSE representative (Table 6).

We used local JIFs as part of the iterative process through which we generated statements of ‘good practice’ about the daily work of local Healthwatch organisations. To tailor the discussion to the needs and interests of our local Healthwatch study sites, in the planning phase (April 2021), we discussed with the Healthwatch CEO or manager at each study site the structure and content of the local JIFs. In dialogue with the Healthwatch CEO or manager, we developed three key questions that we used to guide the discussion during the meeting:

1. What evidence from Healthwatch about public and patient needs and experiences of local services do health and social care partners find most useful?

2. How can the collection and communication of such needs and experience be improved?

3. How can Healthwatch and its local health and care partners work better together to effect positive change for local people?

The CEOs or managers at all Healthwatch study sites were involved in planning the JIFs at their respective organisations and in the recruitment of participants among their health and social care partners. Participants for the JIF workshops were purposively selected by each local Healthwatch organisation based on their role in the organisation, relevance in Healthwatch daily work, participation in earlier phases of the study and their willingness and availability to participate. All four local JIFs were held remotely via Microsoft Teams and lasted between 90 and 120 minutes. Three local JIFs (i.e. Beecham, Dogwood and Elmbridge) were video- and audio-recorded and transcribed for analysis. Technical difficulties meant that the Cherryburgh local JIF was not recorded. Amit Desai and Giulia Zoccatelli took detailed notes.

Local JIFs were organised around two inter-related activities:

1. a presentation about Healthwatch history and statutory functions and about the aims, objectives, methods and outputs of the study

2. a plenary discussion of the current and potential practices used by Healthwatch to gather and communicate evidence about residents’ needs and experiences.

We describe these activities in Appendix 3.

Patient and public involvement meetings (pre-study phase, completed April 2017)

Healthwatch Involvement Panel (phase 2)

Joint interpretative forums (phase 4)

Advisory Group (all phases)

Data sources

We received responses to our survey from 96 local Healthwatch organisations, achieving a response rate of 68% (note that eight Healthwatch organisations responded on behalf of two or more Healthwatch organisations that they operated as a combined organisation). Nineteen (19.8%) of our respondents were commissioned by county councils, 16 (16.6%) by London boroughs, 23 (24%) by metropolitan districts and 38 (39.6%) by unitary authorities. Table 7 presents a breakdown of the responses we obtained based on the geographical region.

Modes of analysis

The survey data and analysis comprised descriptive statistics consisting of single variables and included frequency and percentage response distributions, measures of central tendency and dispersion measures, such as the range and standard deviation. All open comment responses were analysed using open coding and constant comparison. The survey was conducted using the Jisc online survey platform.

Data sources

Data sources include documents collected at the Healthwatch study sites [e.g. agendas and minutes from board meetings, committees and panel discussions, strategy documents, PowerPoint^® presentations (Microsoft Corporation, Redmond, WA, USA), leaflets, feedback forms], transcripts of video- and audio-recorded interviews, ethnographic field notes from informal conversations and observations at each study site and written ethnographic notes and transcripts of HIP meetings. In Table 8, we present a breakdown of fieldwork data sources (observations and interviews) at each of the five study sites. Table 9 outlines the number and roles of attendees at the five HIP plenary meetings.

Modes of analysis

Our principal mode of analysis in phase 2 was informed by ANT, which was developed by Bruno Latour, Michel Callon and John Law as part of science and technology studies during the 1980s32,33 and which has been taken in several directions since its application to the study of health care and health organisations. 37,39,41,42 As discussed in more detail in Chapters 2 and 3, although it carries ‘theory’ in its name, ANT is better understood as a range of methods for conducting research. ANT aims to describe the connections that link together humans and non-humans (e.g. objects, technologies, policies and ideas) and seeks to describe how these connections come to be formed, what holds them together, and what they produce. Amit Desai, Giulia Zoccatelli and Glenn Robert had used this mode of analysis successfully in another study. 40

Our analysis was based on a combination of re-examination of our textual data (i.e. re-reading notes and transcripts, producing memos and reflective notes, and open coding, mostly manual) and discussion, in groups of different sizes, of observations and reflections on field visits. By this we mean that the analysis proceeded through discussion of emerging themes and ideas as much as through individual work. Two researchers on the team, Amit Desai and Giulia Zoccatelli, carried out fieldwork at two study sites each and shared another study site. Amit Desai and Giulia Zoccatelli were jointly responsible for preparing, convening and planning activities for the HIP. In addition, Amit Desai and Giulia Zoccatelli shared an office and met almost daily on Microsoft Teams during the COVID-19 pandemic and therefore had the opportunity to share views and nascent analytical threads as these emerged. These regular meetings allowed for discussion of the practices observed and the conversations had at the study sites. In our analysis, we relied on a mix of documents from Healthwatch and other sources, such as interview transcripts and field notes. Amit Desai and Giulia Zoccatelli met with Glenn Robert (principal investigator) every 2–4 weeks to discuss progress and ideas. Whole research team meetings were held every 2 months throughout the study to discuss emerging themes and potentially useful analytical and reporting approaches.

Individual analysis and group discussions were used to examine our descriptions for each Healthwatch organisation and compared practices and patterns both within each Healthwatch organisation and across Healthwatch (including data from the study sites and, in the later part of phase 2, from the HIP). Emerging data analysis was also sense-checked by the HIP to ensure validity. The findings emerging from these comparisons were used to structure and feed into the following study phases.

By observing practices and having several conversations with Healthwatch staff, board members, volunteers and key partners, we built rich descriptions of the ways in which different elements of Healthwatch work came together and showed identifiable patterns. Through the individual analysis and group discussions outlined above, we examined our descriptions for each Healthwatch study site and compared practices and structures of Healthwatch work [e.g. how Healthwatch staff (humans) interacted with a patient feedback database (non-human)]. Although we relied on the analysis of three types of data, in the presentation of our research findings in Chapters 5–7 we construct descriptions that combine different sources of data in an integrated way for the sake of clarity. This means that we refer to specific data sources (e.g. an interview quotation or an excerpt from a document) only when this adds to the narrative.

Data sources

Text data in phase 3 include documents shared by HIP members (e.g. strategy documents, PowerPoint presentations, leaflets, feedback forms), transcripts of video- and audio-recorded interviews and ethnographic field notes taken by the researchers during the interviews (Table 10 shows a breakdown of data sources from interviews and small-group discussions with HIP members from April 2020 to February 2021).

Data sources in phase 4 include transcripts of video-recorded JIF meetings (both cross-site and local JIFs at each study site) and written notes taken by the researchers during the meeting. The plenary discussion and the three small-group discussions at the cross-site JIF were audio- and video-recorded on Microsoft Teams and transcribed for analysis. Team members also took written notes about general themes emerging from the discussion. The discussions at the local JIFs were audio- and video-recorded on Microsoft Teams and transcribed for analysis. Owing to technical issues arising during the meeting, no recording was made of the Healthwatch Cherryburgh JIF. Instead, hand-written notes were taken by the researchers Giulia Zoccatelli and Amit Desai and used for the analysis.

Modes of analysis

Amit Desai and Giulia Zoccatelli carried out the interviews jointly. Amit Desai and Giulia Zoccatelli read and analysed each transcript separately – together with their notes from the interview – and then met to discuss common emerging themes. Analysis proceeded through this discussion of emerging themes and ideas as much as through individual work. Emerging themes and ideas were then presented by Amit Desai and Giulia Zoccatelli to the whole study team for further discussion and refinement. Initial analysis of findings from individual and small-group interviews with HIP members was presented for sense-checking and further refinement at HIP plenary meetings in April 2020, October 2020 and February 2021.

Standalone or ‘hosted’?

We categorised local Healthwatch organisations as to whether they are (1) independent standalone organisations that only conduct Healthwatch work in one locality or (2) are part of other organisations that also carry out other work. Standalone Healthwatch organisations are sometimes referred to as ‘independent’ by people involved in the Healthwatch world, indicating that the Healthwatch in question is not part of another organisation. We use standalone throughout the report to mean these Healthwatch organisations. The other kind of Healthwatch organisations referred to are called ‘hosted’ organisations. Host types vary greatly across the Healthwatch network and include:

• local community and voluntary sector support organisations that may hold several Healthwatch contracts

• a local social enterprise (e.g. disability charity) that holds the local Healthwatch contract or grant alongside other activities

• a local Healthwatch that holds the contract for additional Healthwatch organisations and does no other non-Healthwatch work.

Most Healthwatch organisations reported that they were ‘standalone’ (n = 56, 58.3%) and 40 (41.7%) Healthwatch organisations said that they were ‘hosted’.

To investigate if geographical size or complexity of local authority structures were associated with whether or not a local Healthwatch organisation is standalone or hosted, we cross-tabulated the above categorisations by size and type of local authority in which each Healthwatch organisation principally operated. There are four types of local authority in England that fund the work of local Healthwatch organisations: (1) county, (2) unitary, (3) metropolitan district and (4) London borough. Of these local authority types, counties are generally larger and more complex than the other three types. This is mainly because counties have two tiers of local government, which means that powers and responsibilities are split between county-level government and district-level local government, and Healthwatch could potentially operate at both these tiers. The other three types of local authority have a single tier. We found that a larger proportion of Healthwatch organisations in counties describe themselves as ‘standalone’ (78.9%) than Healthwatch organisations in unitary authorities (47.4%), metropolitan districts (56.5%) or London boroughs (62.5%). Conversely, Healthwatch organisations in unitary local authorities tend to report a higher proportion of hosted organisations (52.6%) than those in counties (21.1%), London boroughs (37.5%) or metropolitan districts (43.5%).

Contracts or grants?

We explored the different mechanisms by which Healthwatch organisations are funded by their local authority (i.e. contracts or grants). The main difference between contracts and grants is that the former must be tendered in accordance with government (UK and formerly European Union) procurement regulation and this process requires providers of local Healthwatch services to devote considerable time and resources to the management and renewal of their contract. Grants are not subject to these formalities. Applying for a continuation of funding may not be as onerous for grant-funded Healthwatch organisations, in that terms of a grant may be less prescriptive or exacting than a contract. However, grants are normally provided for shorter periods of time (usually 1 year), and shorter funding periods could have an affect on the long-term planning ability of a local Healthwatch organisation.

We found that the majority of local Healthwatch organisations are currently funded through a contract, whereas one-fifth (n = 19, 19.8%) are funded by a grant. One respondent chose the ‘other’ option and explained in the free-text section that their funding mechanism was currently under review (and probably moving from grant to contract). Geographical and local authority-based variations appeared to play a role in determining the funding mechanisms for Healthwatch. For example, although contracts are the main funding mechanism across Healthwatch organisations in England generally, the east of England is the only region in which the number of Healthwatch organisations with grants outnumber those with contracts. Grants make up a larger proportion of funding mechanisms than the England average in counties (n = 5, 26.3%) and unitary local authorities (n = 9, 23.7%), whereas Healthwatch organisations in London boroughs (n = 2, 12.5%) and metropolitan local authorities (n = 3, 13.0%) reported lower proportions of grants than the national picture. We found that a much smaller proportion of hosted Healthwatch organisations hold grants (n = 2, 5.0%) compared with Healthwatch organisations that describe themselves as ‘standalone’ (n = 17, 30.4%).

External funding

Since their launch in 2013, local Healthwatch organisations have undergone significant budget cuts. Publicly available data compiled by Healthwatch England show that the value of contracts or grants was reduced in four-fifths (n = 121, 79.3%) of all 150 Healthwatch organisations in England between 2013 and 2018, with nine Healthwatch organisations experiencing cuts in excess of 50% of their original budget. It is interesting to note that, in parallel, the number of Healthwatch organisations seeking and receiving funding beyond that provided by their local authority for their Healthwatch functions is thought to have increased since 2013. 16 In our survey, we found that 71 (74.0%) Healthwatch organisations were receiving such funding. The two most common services provided in exchange were ‘research on patient or service user experience’ (n = 56, 77.8%) and ‘development of patient/public engagement activities’ (n = 44, 61.1%). The sources of this external funding also varied. Forty-four (62.0%) of the 71 Healthwatch respondents who reported receiving this funding said that they received it from CCGs, 42 (59.2%) reported receiving this funding from local authorities, 25 (35.2%) reported receiving this funding from NHS providers and 24 (33.8%) reported receiving this funding from sustainability and transformation partnerships (STPs) (the precursor to ICSs). Funding sources varied based on local authority types and the geographical location of local Healthwatch organisations. For example, we found that all Healthwatch respondents from London boroughs that reported receiving external funding did so from the health sector. Conversely, outside London, the main source of funding for local Healthwatch organisations was reported to be their local authority.

Healthwatch as award funders

Twenty-seven (28.1%) Healthwatch organisations awarded funding to other organisations. Examples included contracting voluntary and community organisations to gather feedback from groups of people whom Healthwatch found hard to reach or setting up small community funding schemes that were used to engage local organisations to carry out research or engagement with specific patient groups.

Staffing

Publicly available data compiled by Healthwatch England for the period between April 2017 and March 2018 show that, for those Healthwatch organisations responding to the survey, the median number of total employed staff was 6 (range 2–15), the median number of FTE staff was 3 (range 1–13.5) and the median number of volunteers was 23 (range 3–743).

Overall, volunteers were reported to contribute significantly to ‘enter and view’ visits. These ‘enter and view’ visits are statutory powers used by Healthwatch organisations to observe and gather information from staff and users of health and social care services at sites of care (e.g. a general practice or a care home) to assess the quality and standard of care. Forty-two (43.8%) Healthwatch organisations said that ‘enter and view’ visits were carried out ‘mostly by volunteers with some employed staff contribution’, whereas 29 (30.2%) Healthwatch organisations said that they were ‘equally carried out by employed staff and volunteers’. Conversely, administrative and clerical work (n = 95, 99.0%), research and report writing (n = 87, 90.7%) and communications and social media (n = 92, 95.8%) were either ‘wholly carried out by employed staff’ or ‘mostly by employed staff with some volunteer contribution’.

Quality of relationships

We asked how local Healthwatch organisations rated (1) the overall quality of the co-operation among key health and social care stakeholders in their local area and (2) their level of engagement in the development of planning frameworks for health and social care services (e.g. ICSs). Most Healthwatch organisations reported both positive relationships among local stakeholders and a good level of involvement in ICSs (Table 11). However, the survey highlighted significant regional variation across the network. For instance, we found that five out of six Healthwatch respondents in the north-east of England reported having no or limited involvement in ICSs’ development.

More than half (n = 31, 57.4%) of the Healthwatch organisations that reported a ‘good’ overall quality of co-operation among stakeholders in their area reported either a ‘high’ or ‘good’ involvement in ICSs. In contrast, three-fifths (n = 9, 60.0%) of Healthwatch organisations in areas of ‘limited’ co-operation reported only ‘some’ or ‘not much’ involvement in ICSs.

Examples of successful impact

We asked respondents to identify a successful piece of work they had completed in the past 3 years. The responses represent a broad range of cases of perceived impact achieved by local Healthwatch organisations, along with an indication of the type of impact, the time needed to achieve that impact, the ways in which impact was delivered and three key stakeholders involved in each piece of work. In Box 4, we present two examples of the returns we obtained in this section of the survey.

The topics covered in the examples chosen by Healthwatch respondents varied, with hospital care (n = 14, 16.5%), primary care (n = 11, 12.9%), social care (n = 10, 11.8%) and disability (n = 10, 11.8%) being the most common (Table 12).

Regarding the type of impact achieved, almost one-third (n = 29, 30.2%) of respondents selected a project that led to an ‘improvement in the access to care and treatment for the members of their community’. Sixteen (16.7%) Healthwatch respondents selected an initiative through which they ‘influenced new commissioning or commissioning intentions’, 12 (12.5%) chose a project that ‘produced changes to local contract specifications’ and the same number chose a project that ‘improved the quality of care’.

The most commonly reported stakeholders involved in successful projects were ‘CCG board and staff’ (n = 40, 41.7%), ‘service users or service users groups’ (n = 33, 34.4%), ‘health and well-being board members’ (n = 26, 27.1%), ‘community voluntary sector organisations’ (n = 25, 26.0%) and ‘local authority overview and scrutiny committee’ (n = 21, 21.9%). Conversely, ‘governors of trusts’ (n = 0), ‘local MPs [Members of Parliament]’ (n = 1, 1%), ‘NHS England’ (n = 2, 2.1%), ‘staff at neighbouring Healthwatch’ (n = 3, 3.1%) and ‘local STP/ICS boards’ (n = 3, 3.1%) were only selected by a limited number of respondents.

Examples of failed impact

We asked respondents to briefly outline a piece of work that they had completed in the past 3 years that they regarded as being unsuccessful. We also asked respondents to select the type of impact that they wanted to achieve and to describe the main barriers to impact they faced on its delivery (Box 5).

Local Healthwatch respondents chose examples of unsuccessful projects that covered a broad range of topics. The most common topics were primary care (n = 17, 17.7%), hospital care (n = 14, 14.6%), disability (n = 10, 10.4%) and mental health (n = 9, 9.4%). Regarding the type of impact intended to be achieved, the majority (n = 45, 46.9%) of our Healthwatch respondents selected projects intended to ‘improve access to care and treatment’ for members of their local community.

The two most common barriers to impact identified by local Healthwatch respondents were the ‘lack of co-operation among or by key institutional stakeholders’ (n = 36, 37.5%) and the ‘systemic complexity or lack of clarity among stakeholders about respective organisational roles, responsibilities’ (n = 27, 28.1%), which, when combined, were selected by almost two-thirds of our survey respondents. Despite widespread concern about decreasing Healthwatch budgets, only 10 (10.4%) local Healthwatch respondents identified a ‘lack of resources’ as the main barrier to impact.

Healthwatch Ashton (hosted by a charity that also runs another Healthwatch organisation)

Healthwatch Ashton’s contract had been held by Achieve since the launch of Healthwatch in 2013. Achieve is a charitable company that was established in the late 1990s and works to promote health and well-being and address health inequalities in the broader region in which it is based. At the time of our fieldwork, Achieve also held the contract for Healthwatch Oakleigh (which was not a study site). In addition, until recently, Achieve held the contracts for a number of other Healthwatch in areas that adjoin that of Healthwatch Ashton.

Achieve delivered a range of other services in the area, which were funded variously by local authorities, the CCG and the National Lottery Community Fund. These services included leading a project to promote the involvement of seldom-heard groups in council decision-making, advocacy services, networking and research services for the local voluntary sector, and social prescribing projects.

Most of this other work took place outside the local authority covered by Healthwatch Ashton. Healthwatch Ashton’s manager explained that this was why Healthwatch Ashton appeared to operate on its own, separately from Achieve:

One thing I would add is I think Healthwatch Ashton as a contract is fairly self-contained. I mean I know it’s really small but I think it operates, I mean as I said, that doesn’t sort of – I guess what I’m trying to say is we wouldn’t necessarily [work with other parts of Achieve], because it’s in a different geographical area to I suppose [to] the other contracts’ work.

Healthwatch Ashton manager, interview, 6 January 2021

Two members of staff, including the manager, were shared across Healthwatch Ashton and Healthwatch Oakleigh; however, the Healthwatch organisations remained separate operations and were not in geographically contiguous areas. The small size of Healthwatch Ashton’s budget meant that Healthwatch Ashton relied on an active cohort of volunteers to set priorities and to carry out most of its activities (see Box 7).

Although formal governance responsibility for Healthwatch Ashton lies with Achieve’s board, Healthwatch Ashton had also formed its own executive board, which set its strategic and organisational priorities. This board was comprised staff members and volunteers.

Healthwatch Beecham (standalone Healthwatch organisation with a consultancy arm)

At the time of our fieldwork, Healthwatch Beecham was a standalone Healthwatch organisation that was funded through annual grants and run by a charitable company that conducted only Healthwatch work.

In 2016, Healthwatch Beecham established ‘Beecham Voice’, which was a separate company specialised in bidding for and delivering separate engagement and research projects. At the start of our fieldwork in August 2019, Beecham Voice was delivering three projects external to the Healthwatch contract, all of which were commissioned by the local council. These projects included a large 5-year contract awarded in 2019 to develop and facilitate engagement activities with disabled adults, the value of which exceeded that of Healthwatch Beecham’s core grant. Even although all of Beecham Voice’s projects were delivered by Healthwatch Beecham’s staff, during the time of our fieldwork, Beecham Voice was in the process of setting up an independent board, wholly separate from that of Healthwatch Beecham.

In the spring of 2020, Healthwatch Beecham appointed a new CEO and board chairperson and, following these changes, a decision was made to move Beecham Voice to dormant status. Beecham Voice’s independent board was dissolved and it ceased activity in March 2021. The contracts delivered by Beecham Voice were transferred to Healthwatch Beecham, which is now delivering those as Healthwatch projects. Healthwatch Beecham has not reached a final decision about the fate of Beecham Voice. When asked about Beecham Voice by other Healthwatch representatives during the cross-site JIF, the Healthwatch Beecham CEO explained:

I don’t think [Beecham Voice] did fail. We set it up for a specific purpose at a specific time. It delivered that purpose, and it no longer is. So, we were having two sets of accounts, two sets of boards, two sets of board papers, because we had the trading arm [Beecham Voice]. We needed the trading arm at the time when it was set up. It was useful, it’s no longer fit for the need that we have at the moment in the current climate we’re in. A lot of the external funding that we’re getting outside of the core grant is from applying for funds, applying for grants, and they need to be done through a charity. Most of them need you to be a charity in order to be able to apply for the funds, which means that [Beecham Voice] isn’t a vehicle to apply for that work through, so that’s why we’ve moved it to a dormant status so we can reignite it at a point in time if we need to. At this point in time we don’t see the need to invest in it.

Healthwatch Beecham CEO, cross-site JIF, 28 January 2021

Healthwatch Beecham’s board was still undergoing renewal at the end of our fieldwork in December 2020. At that time, it was composed of members mainly selected for their professional expertise (finance, research, charity work, etc.).

Healthwatch Cherryburgh (Healthwatch as a ‘project’ of its host organisation)

Healthwatch Cherryburgh’s contract was delivered by Community Together (Tamworth, UK), which is a community interest company specialised in service improvement through user engagement. Community Together was set up in April 2015 and took over the Healthwatch team and the novated contract from Healthwatch’s previous host, which was a local charity that had previously delivered the LINks contract and whose chairperson, at the time of our fieldwork, was also Community Together’s chairperson.

Since its launch, Community Together has expanded its range of activities and in 2020 was delivering several other contracts alongside Healthwatch Cherryburgh. These contracts included local social prescribers and community navigators, the delivery of support services to local residents who are aged ≥ 50 years, a CCG project to help develop Patient Participation Groups (PPGs) at the level of primary care networks (PCNs), and adviser services to tenants and leaseholders of social housing estates. Healthwatch Cherryburgh was the only Healthwatch contract delivered by Community Together.

The embeddedness of Healthwatch Cherryburgh within its host was reflected in Community Together’s organisational set up. Although five members of Community Together’s staff worked mainly on Healthwatch-related projects, Community Together did not have any formally dedicated Healthwatch staff members exclusively working on Healthwatch matters. Healthwatch Cherryburgh also did not have a dedicated board. Strategic direction for all projects, including those of Healthwatch Cherryburgh, was provided by Community Together’s board, which comprised local residents who were current and retired professionals working in organisation management, research and health and social care. No board member led on Healthwatch’s activities. Community Together’s independent chairperson received an annual salary for their work and represented Healthwatch at the health and well-being board and in several other council and NHS meetings.

In our chats and interviews with them, Community Together’s staff and board members consistently described how Healthwatch Cherryburgh could not be conceived of as separate from its host. Rather, Community Together’s staff and board members talked about Healthwatch as one among the many ‘projects’ in Community Together’s portfolio. For instance, as Community Together’s director told us:

Healthwatch Cherryburgh doesn’t exist. It is just a project [ . . . ] At Community Together, we badge things [projects] differently depending on the situation. If it’s useful for us, if it makes the project more recognizable, then I’d badge something – a stall, an event – as Healthwatch, but the next time I could badge it differently. It depends. Usually, when it’s about health, I’d use the Healthwatch logo, because it’s easier for people to understand what we are about. You know, Healthwatch brings a lot of kudos and a lot of clout.

Healthwatch Cherryburgh’s CEO, interview, 14 September 2020

Healthwatch Dogwood (hosted by a local charity that holds no other Healthwatch contract)

Healthwatch Dogwood was a ‘hosted’ Healthwatch organisation. The contract had been held since 2013 by local charity Direction Health, which provided services to people with disabilities. Direction Health was also the host employer for the local PCN’s social prescribers and held the contract for the local authority’s independent advocacy service. Healthwatch Dogwood had its offices at a complex owned by Direction Health where the host organisation itself was also based. In addition, Direction Health also let office space to other local VCSE organisations. Direction Health charged the Healthwatch contract a management fee, which comprised roughly one-tenth of the value of the contract.

Although formal governance responsibility for Healthwatch Dogwood lay with Direction Health’s board, Healthwatch Dogwood had its own active board that provided it with strategic direction. The board included two types of member; that is, (1) local residents with a background in the health and social care or the VCSE sector (referred to as ‘independent members’) and (2) representatives from local VCSE organisations (including the CEO of Direction Health) and a local authority officer (referred to as ‘co-opted’ members). Given the size of the area Healthwatch Dogwood covers, the board aimed for geographical representativeness among its independent members. Like Healthwatch Cherryburgh, the chairperson of the Healthwatch board was remunerated for their time commitment of 3 days per month. Unlike Healthwatch Cherryburgh’s chairperson, the chairperson of the Healthwatch Dogwood board was not independent and was a full board member.

The existence of a separate Healthwatch Dogwood board, which made decisions about Healthwatch Dogwood’s organisational priorities, allocation of resources and strategic vision, headed by a paid chairperson, meant that in many respects Healthwatch Dogwood looked like a separate organisation from Direction Health. Although staff were formally employees of Direction Health, most staff carried out Healthwatch work exclusively. Only one member of staff had a split role and divided their time between Healthwatch and the host. However, Direction Health maintained involvement in operational decisions and the Healthwatch manager often consulted its CEO in this regard.

According to Healthwatch Dogwood’s chairperson and manager, being hosted suited Healthwatch Dogwood well, as it allowed the Healthwatch board to focus on the Healthwatch work of best conveying public voice into the health and social care system without being distracted by legal, human resources or financial sustainability concerns (these were the domain of Direction Health). Therefore, Healthwatch Dogwood staff said that they felt freer than if they were a ‘standalone’ Healthwatch organisation. Staff found it to be beneficial that, rather than being compelled to recruit board members for their expertise in human resources, legal, finance or fundraising, the board itself included members who could access, and indeed be the voice of the public. Related to this was that Healthwatch Dogwood’s board did not necessarily regard its work as commercially sensitive or private. For instance, in pre-pandemic times, members of the public and VCSE organisations were invited to a coffee morning and asked to stay and observe the board meeting that followed.

Healthwatch Elmbridge (small standalone Healthwatch organisation)

Healthwatch Elmbridge described itself as a standalone Healthwatch organisation. Healthwatch Elmbridge was a charitable company that carried out only Healthwatch work and did not hold the contract of any other Healthwatch organisation. The charitable company was set up in 2013 specifically to hold the local Healthwatch contract and had held it continuously since.

As a charitable company, Healthwatch Elmbridge had a board of trustees with formal governance responsibilities. The board had seven members who were a mix of people working or formerly working in health care, local government or qualitative research, and residents and healthcare users with an interest in public involvement in health. Healthwatch Elmbridge had two co-chairpersons who represented different styles of Healthwatch. One co-chairperson was a senior commissioner in a neighbouring local authority and brought an institutional and strategic perspective, whereas the other co-chairperson had a long history in local health activism and represented a more ‘grassroots’ understanding of Healthwatch. Like Healthwatch Dogwood, where a representative from the council sat on the board, at Healthwatch Elmbridge, the local authority contract manager attended board meetings but was not a trustee. However, there was ongoing discussion within Healthwatch Elmbridge as to whether or not the presence of the contract manager – who was responsible for monitoring performance – at board meetings was appropriate. The board met in private. A suggestion from the local authority contract manager that Healthwatch Elmbridge might consider meeting in public was rejected by trustees, as they felt that this was based on a misunderstanding of the role of Healthwatch Elmbridge’s board, which, for them, was centrally about organisational governance rather than public participation.

Healthwatch Elmbridge used the services of external consultants to conduct some of its activities and these services complemented the skills of employed staff. For instance, one of the main features of Healthwatch Elmbridge’s work was the development of a database of patient and public feedback (see Chapter 6), which was managed by an external information manager who also carried out work for several other Healthwatch in the region. Healthwatch Elmbridge also used an ethnographic research consultancy to plan and carry out projects on specific communities.

Summary

This section presented the variability of Healthwatch’s organisational arrangements at our five study sites. Such variability complicates the straightforward dualism between ‘hosted’ and ‘standalone’ organisations and shows how Healthwatch’s organisational structures are actually the product of a broader range of factors, including organisational histories and board composition (e.g. Healthwatch Ashton, Healthwatch Cherryburgh, Healthwatch Dogwood), strategic planning to better exploit financial opportunities (as in the case of Healthwatch Beecham’s creation of a consultancy arm or Healthwatch Cherryburgh’s ambiguity in terms of the boundaries between Healthwatch and its host’s respective remits) and the lack of geographical overlap between the work of the host organisation and hosted Healthwatch, leading to a degree of separateness (e.g. Healthwatch Ashton).

Looking specifically at the three study sites ‘hosted’ by other organisations (i.e. Healthwatch Ashton, Healthwatch Cherryburgh and Healthwatch Dogwood), our findings show a great variability in their organisational arrangements. Although both Healthwatch Cherryburgh and Healthwatch Dogwood were hosted by a small local charitable company that held only one Healthwatch contract, their respective ways of organising and conceiving Healthwatch work were different.

Healthwatch Cherryburgh did not appear and work as an organisation in the way that, for example, Healthwatch Dogwood seemed to, despite their common hosted status. Staff and outputs were deployed strategically across Community Together, and who or what was labelled ‘Healthwatch’ shifted and bore little relation to the funding purpose for that work. For instance, Community Together had been commissioned by the local authority to gather the experiences of local adult social care users. The outputs of this work were routinely presented to the outside world as being produced by Healthwatch Cherryburgh, even though it was not funded or carried out as a ‘Healthwatch’ piece of work. However, branded as a Healthwatch piece of work, it could be presented at the local health and well-being board at which Healthwatch Cherryburgh has a statutory seat. Such ‘rebranding’, therefore, had the effect of boosting the visibility of that work locally.

Conversely, Healthwatch Dogwood appeared as a quasi-organisation separate to that of its host; that is, Direction Health had an arms-length relationship with Healthwatch Dogwood. The latter had its own board, dedicated staff and projects. At local voluntary sector engagement events, for instance, Direction Health and Healthwatch Dogwood had separate stalls with different staff at each. Healthwatch Dogwood had features which resembled those of standalone Healthwatch such as Healthwatch Elmbridge. Both Healthwatch Dogwood and Healthwatch Elmbridge set their own priorities, deployed their staff and carried out their projects in an autonomous Healthwatch-named way. In terms of backgrounds and professional interests, Healthwatch Dogwood and Healthwatch Elmbridge also looked very similar in composition, although one point of difference is that Healthwatch Dogwood’s board had members who represented other VCSE organisations. Interestingly, although Healthwatch Dogwood’s board was happy to meet in public, Healthwatch Elmbridge’s board was not. Nevertheless, the similarities between the two blur the presumed distinctiveness of hosted Healthwatch organisations compared with standalone Healthwatch organisations. This was very different from Healthwatch Cherryburgh, where, as its CEO described, ‘Healthwatch Cherryburgh doesn’t exist. It is just a project’ (Healthwatch Cherryburgh’s CEO, interview, 14 September 2020).

Similar to Healthwatch Dogwood, Healthwatch Ashton – also a hosted Healthwatch – behaved autonomously, despite being part of a much larger charity (Achieve), which had supralocal activities and one other Healthwatch contract. Healthwatch Ashton had its own board and staff, as well as an active cohort of Healthwatch volunteers separate from those of Achieve. As Healthwatch Ashton’s manager discussed above [see Healthwatch Ashton (hosted by a charity that also runs another Healthwatch organisation)], part of the reason for this autonomy was that Achieve’s other contracts were for activities in other local authorities, CCGs and ICS to that in which Healthwatch Ashton operates. Therefore, Healthwatch Ashton, even although it was hosted, looked organisationally much more like Healthwatch Elmbridge than Healthwatch Cherryburgh (one of the other hosted Healthwatch organisations among our study sites). This complicates the categories of ‘hosted’ and ‘standalone’ Healthwatch organisations. Although these terms have a basic descriptive function and are also used rhetorically to make claims, they cannot in themselves explain how Healthwatch organisations function. We have shown how this applies to ‘hosted’ organisations; however, it also applies to standalone Healthwatch organisations such as Healthwatch Beecham [see Healthwatch Beecham (standalone Healthwatch organisation with a consultancy arm)], the structures of which produced a different manifestation of a standalone Healthwatch compared with Healthwatch Elmbridge. Healthwatch Beecham and Beecham Voice ran alongside each other as separate organisations, each with its own board and projects, but delivered by the same staff. One effect of this was to complicate the chains of accountability of Healthwatch Beecham, as it was linked via its staff to the operations and priorities of Beecham Voice.

Healthwatch Beecham: large funding and larger opportunities

Healthwatch Beecham had the largest core funding among our five study sites. Funded through a local authority grant that was renegotiated yearly, Healthwatch Beecham had a core budget of £540,000 at the beginning of our fieldwork in 2019. Of this, £120,000 was specifically awarded for the delivery of signposting services for health and social care in the area, but this additional money was cut from the 2020–21 grant. However, even without this amount, in 2020–21 Healthwatch Beecham was still one of the best-funded Healthwatch organisations (in absolute terms) in the entire national network.

Although Healthwatch Beecham’s large budget was justified by its officers based on the size of its local population, its funding was not used to ensure a greater presence of Healthwatch across the large county where it is based (e.g. through the establishment of local Healthwatch Beecham branches in different districts). Rather, funds were principally used to employ highly specialised members of staff. In addition to the CEO and office manager, Healthwatch Beecham employed 13 other staff members split into four teams (i.e. engagement, research, information and signposting, and communication and marketing). Apart from those in the information and signposting team and one research officer, most staff members worked full-time.

Healthwatch Beecham’s staff included people trained at PhD (Doctor of Philosophy) level (e.g. research manager), as well as people who have had high-profile and successful careers in their respective fields (e.g. communication lead). Staff members played a key role in shaping the activities and profile of Healthwatch Beecham locally; for example, they regularly designed and followed sophisticated strategies for platforms such as radio, television, local newspapers, podcasts, guest lectures at local universities and community workshops (as well as attending policy stakeholders’ meetings, such as those with the local authority and CCG) to disseminate Healthwatch Beecham’s work. In addition, work by these members of staff is occasionally published in peer-reviewed journals and academic-edited volumes.

These specialised members of staff were also instrumental in creating new opportunities for the organisation, helping it to attract additional funding, as well as skilled staff members. For example, during the time of our fieldwork, Healthwatch Beecham’s research manager was involved in the design of two successful seed fund applications for projects funded through UK Research and Innovation and the NIHR Applied Research Collaboration in partnership with two local universities. One of these projects drew on Healthwatch Beecham’s previous connections with a network of charities and community groups looking to support people living with neurological disorders. The project aimed to involve the charities and community groups in the design of further research projects proposed by the VCSE, which would be delivered collaboratively by the local university, VCSE and Healthwatch Beecham.

The involvement of Healthwatch Beecham in formal partnerships with local universities allowed the organisation to access the often substantial additional funding derived from successful grant applications. An indirect consequence of these academic partnerships was that Healthwatch Beecham then became aware of, and was able to access more effectively, additional skilled staff at subsidised cost through university and government training schemes. For example, in January 2021, two members of Healthwatch Beecham’s communication and marketing team were apprentices on a 4-year programme in collaboration with a local university. One member of the research team was a secondee from the CASE (Collaborative Awards in Science and Engineering) PhD Studentship programme and was on a 12-week placement as part of her PhD at another local university.

Like Healthwatch Beecham, other Healthwatch organisations were also aware of the potential of collaborating with universities to access academic research funding. We found, however, that different levels of funding have an important impact on the ability of local Healthwatch to exploit the possibilities offered by a closer collaboration with local universities. In Box 6 we present the experience of a member of the HIP; that is, the CEO of a Healthwatch organisation with a core budget of less than £100,000, in collaborating with universities.

Healthwatch Ashton: the effects of a small contract

In contrast with Healthwatch Beecham, Healthwatch Ashton had one of the smallest annual contracts of any Healthwatch in England (a total of £80,000 between local authority funding and LRCV funding). Healthwatch Ashton’s core funding from the local authority was approximately £40,000 per year and was paid in four instalments. Healthwatch Ashton also received £40,000 per year that must be used to fund local VCSE to carry out engagement work on its behalf. This latter funding came from the LRCV grant and was paid to Healthwatch Ashton at different times every year and specifically when grant payments did not coincide with the payment of its core funding. This was an unusual arrangement for Healthwatch funding, as most Healthwatch organisations received the LRCV grant bundled with their core local authority contract and could use it at their discretion. These funding arrangements had several interlinked consequences.

First, the core funding from the local authority contract was not enough to cover Healthwatch Ashton’s operating expenses as they arose through the year and, therefore, the shortfall was covered by Healthwatch Ashton’s host Achieve. The shortfall was then repaid when the LRCV grant was released by the local authority. The uncertainty associated with the LRCV grant in terms of its timing and amount meant that Healthwatch Ashton found it difficult to plan its work.

Second, the small size of the core contract funding meant that Healthwatch Ashton had a staff team of < 1 FTE in total, which greatly limited its capacity to carry out conventional Healthwatch activities. Consequently, the team had to develop a way of working that relied heavily on the contribution of volunteers (Box 7). At the time of our fieldwork, Healthwatch Ashton’s staff was composed of a manager, volunteer support officer and a communications officer, all of whom were part time and whose total FTE was < 1. A significant proportion of staff time was spent supporting volunteers in their activities; in fact, this was the main responsibility of one of its three dedicated officers. The small budget also meant that Healthwatch Ashton needed to make difficult choices about what to prioritise. At the start of its most recent contract, Healthwatch Ashton had to decide whether to focus its work either on engagement or volunteer support, and, given its need to involve volunteers, they chose the latter; however, this meant that it had no capacity itself to carry out engagement work with the public and patients. This put pressure on staff and led to the volunteer support officer also doing engagement work when she could.

Third, as Healthwatch Ashton could not use the money from the LRCV in an unrestricted way (e.g. to carry out targeted and planned engagement activities itself), but had to – in effect – outsource engagement work to local VCSE organisations (e.g. conducting surveys of particular groups), Healthwatch Ashton had no opportunity to develop its own engagement capacity. The manager of Healthwatch Ashton explained that, this led to some confusion about how Healthwatch works on the part of the volunteers, who were so central to its the running:

[Healthwatch Ashton’s volunteers] say ‘why do we have to give that money away to other organisations?’.

Fieldnotes, 18 February 2020

External funding

The example above shows the effect of a small core budget in absolute terms. There is another aspect related to the fluctuation of funding and well-established trend towards falling Healthwatch budgets: as we discussed in Chapter 4, publicly available data show that, since their launch in 2013, local Healthwatch organisations have undergone significant budget cuts. The value of contracts or grants was reduced in four-fifths (n = 121, 79.3%) of all 150 Healthwatch organisations in England between 2013 and 2018.

Such a funding squeeze has led to increased discussions within and among Healthwatch organisations about the desirability of generating income in addition to their core contracts. Our survey showed that a majority of Healthwatch organisations now bid for external funding [and 71 (74.0%) Healthwatch organisations among our survey respondents were receiving such funding]. Some Healthwatch representatives argued that soliciting and accepting external funding was problematic because it fundamentally encroaches on Healthwatch’s key principle of independence. Healthwatch Cherryburgh’s chairperson, for instance, described this situation in the following terms during the cross-site JIF:

I mean Healthwatch is one of a number of, oh, it’s the last of a number of attempts to establish an independent voice for patients and the public and I think we had high hopes at the outset that it would be able to be the independent voice, and certainly when we started in Cherryburgh we had lots of dosh to do it! We had lots of ambitions as to how we could sustain that independence – but slowly but surely the money has become less and less and we were obliged really to enter into a whole range of contracts with different parts of the NHS and social care, and I think relationships are reasonably friendly but there’s a lot more that we would be able to do if we had the resources to really inject a thorough, independent voice into the systems [ . . . ] There’s a continuum between independence and slavery, I suppose, and I think we’ve very much slid back towards the slavery over the period. That’s not to undermine what we’ve done but it’s very far from the independent free-speaking outfit that I would have liked to have seen.

Healthwatch Cherryburgh chairperson, cross-site JIF, 28 January 2021

Healthwatch Dogwood’s chairperson offered a slightly different perspective, which was less absolute. Healthwatch Dogwood’s chairperson recognised that different Healthwatch organisations would make different decisions based on their level of funding. In addition, Healthwatch Dogwood’s chairperson felt that Healthwatch Dogwood was relatively comfortable financially and, therefore, did not need to charge for additional work:

I think they should seek commissioned work and work in partnership when there’s a particular need, but I don’t think it should be funded because that may – it may – colour the independence. [ . . . ] But I would say within that it depends on the financial state of the Healthwatch because I think Healthwatch Dogwood has not had its funding reduced in the last 2 or 3 years – he says, touching wood – but I’m sure that other Healthwatch whose financial state is much less secure than ours, then I would understand they may have a different perspective.

Healthwatch Dogwood chairperson, cross-site JIF, 28 January 2021

This was borne out by fieldwork at Healthwatch Dogwood. For instance, staff at Healthwatch Dogwood had carried out an engagement project with PPGs at a PCN for which they did not charge. The Healthwatch manager explained that, although the PCN offered to pay for this work, Healthwatch Dogwood refused because it did not need the additional income and it was more important to develop good relations and obtain experience of this kind of activity.

Among our study sites, a minority of Healthwatch respondents and HIP members expressed an opposing view to those of Healthwatch Cherryburgh and Healthwatch Dogwood’s chairpersons. Rather than viewing external funding as a problem, some Healthwatch respondents and HIP members regarded it as a way to ensure that their work achieves better impact, as Healthwatch Beecham’s business manager explained:

I think that it’s [external funding] allowed us to be able to be independent but also to hold the stakeholders to account because they’re obviously paying for a service so they need to listen to what these people are saying.

Healthwatch Beecham business manager, cross-site JIF, 28 January 2021

Healthwatch Elmbridge’s chairperson echoed this sentiment. Although Healthwatch Elmbridge’s chairperson recognised that the search for external funding was a result of issues of financial sustainability, not being solely reliant on local authority core contract funding also allowed Healthwatch to be more independent:

I want to say that we actively seek commissioned work because, you know, with a new commissioning round coming up, we don’t believe that we’re going to be able to keep the same level of commissioning from the local authority and we need to diversify our revenue streams in order to be sustainable. And also in order to be independent.

Healthwatch Elmbridge chairperson, cross-site JIF, 28 January 2021

In Box 8, we present an example of the complex entanglement of ethics and financial considerations surrounding a Healthwatch organisation’s decision to explore external funding opportunities.

Summary

Money is a major axis of variability between Healthwatch organisations. Different amounts of funding in different areas enable the creation and maintenance of radically different sorts of organisations, which, nevertheless, ostensibly share the same mission. Healthwatch contract value is partly justified based on population. Therefore, larger local authority areas tend to have larger absolute amounts of funding than smaller areas. However, these larger absolute amounts of funding are not used to help these Healthwatch organisations replicate the services of smaller Healthwatch organisations on a larger scale, rather the larger contract value enables such Healthwatch organisations to hire larger numbers of more varied staff and, therefore, offer different services. In so doing, larger Healthwatch organisations become very different from smaller Healthwatch organisations, despite the name they share. This point has been reinforced by interviews with managers of large Healthwatch organisations in our study sites and our HIP. Towards the end of the fieldwork period, for instance, managers reported that five of the larger Healthwatch organisations by contract value had created an informal network to discuss issues that are specific to them and not catered for by the official Healthwatch network infrastructure, which tends to be geographically organised.

The value of its contract influences the ability of a Healthwatch organisation to engage local people and promote their involvement in the monitoring and planning of services. Consider the specialisation of staff and engagement of the two Healthwatch study sites we considered above, Healthwatch Beecham, for instance, could link up with academics and involve specialist and expert VCSE organisations, as well as condition-specific patients in longer-term projects. Moreover, Healthwatch staff, there had the skills to facilitate co-design processes. Compare this with Healthwatch Ashton, which was unable to conduct its own engagement activities within the funding awarded by the local authority, as the then Healthwatch Ashton manager explained when reflecting on the effect of their funding structure:

. . . our size does affect our ability to have a voice.

Fieldnotes, 12 November 2019

We have also seen how a fall in the value of local Healthwatch contracts over the past 8 years meant that many Healthwatch organisations chose to solicit additional funding from the NHS and local authorities themselves. This has raised questions for some Healthwatch organisations about whether this lessens their independence or enhances it. It may also be the case that those larger Healthwatch organisations are in a better position than smaller ones to obtain substantial external funding for research or engagement activities, therefore widening the gap between Healthwatch organisations even further and raising questions of equity for people in different areas of England. Perhaps the most striking consequence of the differential levels of funding is the effect on the capacity of Healthwatch as an organisation to grow and diversify and, in doing so, expand not only the notion of Healthwatch, but also the notion of voice itself.

A fragmented institutional landscape and its effects on Healthwatch’s practices and strategies: the example of Healthwatch Beecham

The local authority area in which Healthwatch Beecham is located is a large county (Beecham) characterised by a large number of health and social care actors. For instance, there are five CCGs, three ICSs (all of which also cover other local authority areas) and 293 general practices. Beecham’s health and well-being board provides strategic oversight of all these actors.

The size and fragmentation of the institutional landscape of the county make it difficult for Healthwatch Beecham to scrutinise services and to participate in meetings and events held in each lower-tier local authority in the county. For instance, during our research, Healthwatch Beecham was attending only the county-level health and wellbeing boards and not the 12 district-level health and well-being boards, despite invitations to attend them. The new CEO (since August 2020) discussed with us how she was planning to expand Healthwatch volunteering programmes so as to have ‘volunteers sitting on those and feeding information back up to us’ (Healthwatch Beecham CEO, cross-site JIF, 28 January 2021). This volunteering project had not yet been launched at the end of our fieldwork in Healthwatch Beecham.

The challenges posed by the size and fragmentation of its local system significantly influenced the practices and strategies adopted by Healthwatch Beecham in its daily work. The large number of local providers was, for instance, cited as one of the key reasons why Healthwatch Beecham had decided not to conduct any enter and view visits. Instead of trying to build relationship with a large number of providers, Healthwatch Beecham chose to adopt a more in-depth and broad-scale focus on specific themes, which it explored through the lived experiences of local people (see Healthwatch Beecham: long-term in-depth engagement shaped by the interests of staff members for details), as Healthwatch Beecham’s CEO (until March 2020) explained to us:

At Healthwatch Beecham we can’t do the same things that other Healthwatch do. We don’t go to the council and say ‘we visited all the GP surgeries in the county and we gathered feedbacks in each one of them’. Honestly, so what? What we do is identifying gaps in the market. There is still no work done on this topic, we do it.

Fieldnotes 28 August 2019

This more focused and theme-led way of working had limitations that were sometimes highlighted in our conversations with local partners. Limitations included the fact that Healthwatch Beecham staff did not necessarily know how the system worked as a whole, and did not have the range of contacts that other Healthwatch organisations might have maintained. This can be seen in an interview with Healthwatch Beecham’s commissioner (5 November 2020):

Is there anything you would improve in how Healthwatch operates and –

I think I’m seeing improvements now, you know, in terms of leadership and, you know, sometimes their connections and their kind of knowledge of the health and social care system [ . . . ] hasn’t always been as good as it could be. One of the projects I had to explain the difference between personal health budgets and personal budgets in a social care context – that sort of thing I would kind of expect them to skill themselves up over – so the context of how health and social care works should, for me, be stuff that they are aware of. Obviously, they won’t know all the detail but, broadly speaking, they should be aware of [the context].

A dominant and successful provider: the example of Healthwatch Dogwood

From Healthwatch Dogwood’s perspective, one of the most important features of Dogwood’s health and social care institutional landscape was the presence of a large and successful provider trust. At the time of our research, the trust ran acute and community health services in the area, along with adult social care. The trust also had a subsidiary primary care arm that ran several general practices in both Dogwood and in a neighbouring CCG patch. The trust was one of the few English trusts to have consistently received an ‘outstanding’ rating from the CQC. Moreover, many of the area’s key stakeholders also had formal roles at the trust or had held positions with it in the past. For instance, the CEO of the local authority was also an executive director of the trust. In addition, Healthwatch Dogwood’s own chairperson was for several years a non-executive director of the trust.

One of the area’s health and social care leaders described this dominance:

. . . we have brilliant healthcare, we have brilliant providers, but they are very difficult to control and to influence because at the end of the day, some of their departments – their financial department just says ‘shut up, we’re rich and successful. Go away, you’re little and trivial’ . . . the trust are very dominant . . . and they like to be dominant and they like to use that and they are incredibly successful.

Dogwood CCG chairperson, interview, 1 October 2020

The trust had an active and well-resourced engagement and communications department, which, in Healthwatch Dogwood’s view, was very protective of the trust’s operations. Therefore, Healthwatch Dogwood found it difficult to make its voice heard with regard to the services the trust provides. For instance, Healthwatch Dogwood’s reports on the trust’s hospital services were often responded to in a minimal way or ignored completely, partly because of a history of tension between Healthwatch Dogwood and the trust (the cause of which was a hospital closure consultation conducted several years ago). Although relations had improved greatly since then, Healthwatch Dogwood occasionally received mild informal complaints from the trust about the way in which conducted its work. For instance, a misunderstanding arose between this Healthwatch organisation and the trust about the characterisation of a patient story that had been published in a Healthwatch England document. Although the story was not identified with the trust and was presented as a generic issue, the trust nevertheless felt that Healthwatch Dogwood ought to have given them advance notice.

One way in which Healthwatch Dogwood had begun to make space for itself in this particular institutional landscape was to engage more actively with other providers in the area, such as the mental health trust and PCNs, as well as with the VCSE sector, and to improve relations with the CCG. For instance, it had recently been formally involved in the mental health trust’s planning and commissioning of a new recovery college to be delivered by VCSE partnerships. Healthwatch Dogwood’s contribution was sought because of its knowledge and connections with smaller VCSE organisations in the county.

A joined-up health and care landscape: Healthwatch Cherryburgh and Healthwatch Elmbridge

Healthwatch Cherryburgh and Healthwatch Elmbridge are both located in areas where there is a strong history of integration of key health and social care actors.

In Healthwatch Cherryburgh, the integration of the local health-care system was being formalised during the time of our research through the establishment of a borough partnership board. Healthwatch Cherryburgh was actively involved in the development of the board and was a member of a working group that regularly met to develop and define both the strategic (i.e. health and well-being strategy) and operational (i.e. delivery plan) aspects of the future working of the board. According to Healthwatch Cherryburgh’s CEO, the operations of the working group were going smoothly. After attending a successful working group meeting with one of the fieldworkers, Healthwatch Cherryburgh’s CEO explained that the main reason for this was the local health and care system’s history of working in partnership, even before the formal establishment of the partnership board:

Frank [pseudonym] said that members of the working group were able to collaborate very well because they are used to working together. They worked together even before the formal work they are now doing to establish the partnership board. In Cherryburgh people don’t change, they are always the same people you keep on meeting at various boards and committees. They have learned how to communicate; they know which personalities are there around the table and they generally listen to each other.

Fieldnotes, 7 January 2020

The cohesiveness of the local system and Community Together’s active involvement in the integrated work of local stakeholders meant that Healthwatch was able to establish itself as a recognisable partner in the system. As part of the development work for the borough partnership, Healthwatch Cherryburgh’s director was, for instance, made responsible, alongside the CCG’s head of communication and engagement, for producing the ‘partnership’s engagement and co-production strategy’.

Compared with the relative novelty of Cherryburgh’s formal integration, Elmbridge had formally established an ICP involving commissioners, providers, the local authority and the VCSE for almost a decade at the time of our fieldwork. Healthwatch Elmbridge is not a board member of the partnership. Healthwatch Elmbridge was offered a place, but decided that, as it already sits on the health and well-being board, which oversees the work of the partnership, such a dual role might have proved complicated. Instead, Healthwatch Elmbridge sat on each of the three workstreams of the partnership that look, respectively, at the health and social care of young people, healthy adults and older people. The existence of an advanced partnership in Elmbridge affected the ways in which Healthwatch Elmbridge conducted its work into patient and service user experience and also the ways in which such work was received by various stakeholders. For instance, Healthwatch Elmbridge organised some of its engagement projects and report-writing around ‘localities’ (the borough is divided into four localities), which was one of the key ways in which the partnership organised and targeted its work. Similarly, Healthwatch Elmbridge was increasingly using ‘I statements’ (e.g. ‘I am supported to make healthy lifestyle choices’) sourced from the partnership’s own outcomes framework to track how local people understood their health and social care support. Healthwatch Elmbridge also attempted to triangulate its data from engagement work with public health, local authority, GP and CCG data to create a richer picture of patient and public experiences and needs. In Box 9, we present an example of Healthwatch Elmbridge’s work in its ICP.

Summary

Healthwatch is embedded in an ecosystem of relationships with people in the health and social care system, as well as in the material and institutional infrastructures of the areas where they operate (e.g. a successful provider trust, a long-standing partnership board, a larger number of district-level health and well-being boards). In the ethnographic examples provided above, we have described how these various ecosystems shape individual Healthwatch strategies and practices.

One example of this is Healthwatch Beecham’s focus on the in-depth, lived experience of local people about specific health and social care topics, which was influenced by the challenges posed by the sheer complexity and size of the health and social care system. In its daily work, Healthwatch Beecham was confronted with a large number of possible institutional partners and associated meetings (both formal and informal) at which projects might be discussed and at which decisions about commissioning and provision might be taken. In this context, at the time of our research, Healthwatch Beecham embraced a more thematic way of working that did not rely on continuously maintaining a large number of relationships, something which would have consumed huge resources. However, this more focused approach made Healthwatch Beecham’s staff less familiar with the day-to-day working and priorities of individual institutional actors.

This point is further illuminated by the contrast with other study sites. Healthwatch Cherryburgh and Healthwatch Elmbridge were part of well-integrated systems even before the formal development of their ICPs. In these areas, the relationships forged by Healthwatch were more predictable because of the smaller identifiable number of people and institutions with whom Healthwatch can have regular and consistent contact. As the CEO of Healthwatch Cherryburgh reported, in these systems people are used to collaborating and know each other’s work and capacities, and this meant that these Healthwatch’s practices and strategies were more easily embedded in local institutional conversations around health and social care.

The partnerships involving Healthwatch Cherryburgh and Elmbridge contain some actors who were more powerful than others. However, no single actor emerged as totally dominant. This was not the case in Healthwatch Dogwood’s area of operation. For Healthwatch Dogwood, the local provider trust presided over the health and social sector by virtue of its size, financial status and success, and this had an impact on the everyday work of Healthwatch Dogwood. In its daily work, Healthwatch Dogwood was constantly reflecting on its positioning within the system and whether or not any given course of action would have resulted in conflict with the trust and others. For instance, some of those involved in Healthwatch Dogwood were more willing to take a less cautious approach than others within the organisation. One response that sidestepped this ever-present tension was that Healthwatch Dogwood had begun to cultivate relationships with other institutional actors in configurations that do not involve the dominant provider trust. As we outlined above, these new relationships include relationships with the mental health trust and the VCSE sector.

Healthwatch Ashton: engagement projects carried out by local Voluntary, Community and Social Enterprises

Most Healthwatch organisations carry out their own engagement projects. However, Healthwatch Ashton’s small contract value and peculiar funding model (see A fragmented institutional landscape and its effects on Healthwatch’s practices and strategies: the example of Healthwatch Beecham) means that, at the time of our research, it was unable to conduct substantial engagement projects itself, except for small projects supported by Healthwatch England or NHS England. Instead, Healthwatch Ashton used the LRCV funding (which it received separately from its core contract) to fund local VCSE organisations, which then conducted engagement with the public and patients.

Healthwatch Ashton runs a competitive process for these grants every year. Healthwatch Ashton’s executive board, which was composed largely of volunteers who are local residents, reviewed the applications, scored them and decided which projects to fund and at what level. Healthwatch Ashton stipulated that the projects had to be consistent with the mission of Healthwatch. In addition, the board often set other criteria (e.g., encouraging applications that proposed hearing from seldom-heard groups and rural communities). Projects that received funding committed to completing the work within a certain time and to producing a final report that would feature Healthwatch Ashton’s logo, as well as granting Healthwatch Ashton (and its host Achieve) the right to use any data gathered as a result of the engagement project.

Completed projects were presented to Healthwatch staff and volunteers, and staff discussed with recipients of grants ways in which the findings from their reports might be developed. For instance, at a meeting in late 2019, a local young persons’ charity CEO presented their work on collecting young people’s experiences of non-statutory mental health care and support. One finding of the CEO’s work was that young people with minor mental health issues in the area did not relate well to adult support workers and, therefore, young people found it difficult to talk to adult support workers. This finding – together with others – pointed to an increased role for peer mentoring of young people with mental health issues. The charity CEO said that there were no organisations offering this service and they were looking for ways in which they could plug the gap. Healthwatch Ashton responded in two ways in the meeting. First, Healthwatch Ashton said that it would take these findings to the local health overview and scrutiny committee and ask for them to be given an agenda item, therefore bringing it to the attention of the commissioner and providers attending the meeting. Second, Healthwatch Ashton could support the charity with applications to obtain funding for a peer support programme.

This example demonstrates several aspects of this way of conducting engagement. The intention of Healthwatch Ashton was to access the voices of people whom it otherwise finds difficult to access. This particular meeting featured presentations from two Healthwatch-funded engagement projects on young people on mental health services. These are voices that Healthwatch Ashton did not hear through other channels, as one of its executive board members said at the meeting:

. . . in the last hour, we’ve heard more about children’s mental health services than in the last 2 years.

Ideally, these projects were intended to give Healthwatch Ashton data that it could take to key statutory stakeholders and suggest changes with. Conversely, the VCSE grantees of engagement funding wanted the access to mental health commissioners, which they believed Healthwatch could offer.

However, there were significant limitations for Healthwatch Ashton in conducting engagement in this way. Although Healthwatch Ashton decided which proposals to fund, it had little control over the applications it received. Taken together with the requirement that the LRCV funding had to be spent within a certain period of time, this meant that Healthwatch Ashton funded projects that do not necessarily fall within conventional definitions of ‘engagement’ (e.g. increasing telephone support capacity at a charity providing services for unpaid carers). As has happened in the past, there is also a risk that projects are not completed. Given Healthwatch Ashton’s staffing constraints, Healthwatch Ashton had limited ability to mitigate these risks in a practical way (e.g. by seconding a skilled member of staff to support the organisation in its work).

Healthwatch Beecham: long-term in-depth engagement shaped by the interests of staff members

Most of Healthwatch Beecham’s engagement projects involved long-term in-depth collection of people’s ‘lived experience’. Projects were mainly identified based on the personal interests of Healthwatch Beecham’s staff, and then selected based on importance and potential impact. Topics and dissemination strategies were identified in line with Healthwatch Beecham’s priority areas, externally commissioned work or knowledge gaps identified by the staff. As the office manager explained to us at the beginning of our research, the choice to carry out a specific engagement project was ultimately always made by individual team members:

. . . as a rule of thumb, we always let people decide whether they want to do something, so they are interested. We want passionate people, we don’t want people to do projects they are not passionate about.

Fieldnotes, 7 October 2019

Once they identified a project they wanted to carry out, staff members drafted a proposal. In the proposal staff identified the need for the project being conducted, the evidence to be collected, the intended impact and possible sources of funding external to Healthwatch’s core grant. This information alongside the project’s budget were then presented to Healthwatch Beecham’s board. If the board agreed, then the project was then signed off and could start.

At the time of our study, each member of Healthwatch Beecham’s engagement and research team was busy conducting at least one long-term engagement project that aligned with their personal interest. For instance, Paul (pseudonym), an engagement officer who joined Healthwatch in 2018 after a career in the police had been carrying out a project looking at perceptions of, and support for, poor mental health among emergency service staff. Paul’s work had involved interviews, focus groups and observations carried out over a period of 7 months with police officers, British Transport Police staff, paramedics and acute hospital staff. Staff in the communication and marketing team helped Paul with the design of his 42-page report.

The dissemination strategy of Paul’s project also reflected his particular strengths, personal concerns and previous experience. As in the case of many other Healthwatch Beecham staff reports, Paul’s report was promoted on Healthwatch Beecham’s website and social media channel. The report was sent to several relevant stakeholders with whom Paul had been in contact during the engagement phase of this work, including staff in the local police, transport police, ambulance services, one local hospital, CCG and ICS. Paul had also been invited to give guest lectures and seminars at the nursing and occupational health departments of two local universities, and planned to produce a podcast episode featuring interviews with the project’s participants.

Given the sensitivity of the project’s topic, Healthwatch Beecham decided to avoid using more mainstream channels (e.g. local radio, newspapers and TV channels) to disseminate report findings, as they would normally do otherwise.

Healthwatch Cherryburgh: blurring the distinction between Healthwatch and its host’s engagement work

As with other aspects of Healthwatch Cherryburgh’s work, there was little distinction between the engagement work conducted as Healthwatch Cherryburgh and that conducted as Community Together. Some projects were branded as Healthwatch projects, even when they were engagement activities commissioned from Community Together.

For instance, since 2017, Community Together had been commissioned by the local authority to organise and oversee the activities of nine reference groups of local residents who used adult social care services. The chairpersons of each reference group were also members of a joint partnership board (JPB) that meets every 2 months and is co-chaired by Community Together’s chairperson. Both the JPB and the individual reference groups were regularly attended by council, CCG and ICS representatives, depending on the topic. During the five meetings of the reference groups and of the JPB that we attended, service users, carers and general residents actively participated in the discussion about strategic priorities (e.g. the council’s new carers strategy) and the planning of services they used (e.g. the redevelopment of a day centre for people with learning disabilities).

To carry out this engagement work, Community Together had appointed a ‘partnership manager’ whose job was entirely dedicated to the organisation and management of the project. Despite being a Community Together employee paid with funding external to the Healthwatch contract, the partnership manager was considered by Community Together’s staff to be a member of the Healthwatch team. The partnership manager was one of the five people who regularly attended the monthly Healthwatch Cherryburgh team meetings alongside Community Together’s CEO and the communication manager. The reports that the partnership manager produced through engagement work with the reference groups and the JPB were usually presented at formal council and CCG meetings as Healthwatch reports. When we asked Healthwatch Cherryburgh’s CEO if the council also considered this to be a ‘Healthwatch project’, rather than a ‘Community Together project’, the CEO explained to us:

For this work, the council probably approached us as Healthwatch. As I told you, for us Healthwatch is like a hat we put on when it is more useful, when it makes things clearer for our partners. So, normally, if it [a project] has to do with health and social care, we’d do it with our Healthwatch hat on.

Healthwatch Cherryburgh’s CEO, interview 7 January 2020

Healthwatch Dogwood: engagement project prompted by feedback from local people

Healthwatch Dogwood considers itself a ‘listening organisation’ and, therefore, found it valuable to launch engagement projects prompted by unsolicited feedback from members of the public or patient groups.

For instance, in spring and summer 2019, Healthwatch Dogwood began receiving feedback from local residents, informing them that a hearing aid repair ‘drop-in’ service that they relied on was being withdrawn. This ‘drop-in’ service was provided by a local hearing loss charity and it ran sessions in accessible settings, such as libraries and general practices, around the county. The ‘drop-in’ service also offered information about living with hearing loss at these sessions. The charity could no longer run the service because of a loss of funding. Users would, therefore, have to travel to NHS audiology clinics at a limited number of hospital locations. As hearing aids need regular maintenance and repair, users contacted Healthwatch Dogwood because they were concerned that the ‘clinic-only’ service would be inaccessible to people who relied on public transport or lived in remote parts of this large rural county. There was fear, therefore, that people would be compelled to use defective equipment, severely affecting the quality of their lives.

On the basis of this unsolicited feedback, Healthwatch Dogwood decided to examine the impact of the closure of the ‘drop-in’ service by collecting the experience of users of audiology services. Healthwatch Dogwood had, at that time, two members of staff who carried out engagement work: Lorna and Vicky. Vicky also worked on ‘insight’ and analysed evidence and drafted reports. Lorna and Vicky discussed the project with the hearing loss charity and the trust that provided audiology services in the county, and both the charity and the trust were enthusiastic about the work.

Over the course of 2 months in autumn 2019, Lorna and Vicky held a number of feedback sessions at both community settings (general practices and libraries) that had formerly hosted the hearing aid repair services, and at the hospital-based clinics. Lorna and Vicky distributed a survey at these sessions and listened to user experience as told to them. Lorna and Vicky also invited people with hearing loss to attend a focus group. Vicky analysed the data and wrote the report over the course of 4 months.

A draft of the report was shared with the trust and the CCG, and both sent responses that were ultimately included in the published version. Although Healthwatch Dogwood’s manager noted that these responses were ‘a bit bland’, in that they offered very little specific action, Healthwatch Dogwood’s manager was nevertheless excited that the team had produced a detailed and investigative report that had its origin in unsolicited feedback and highlighted an issue that had hitherto gone unreported. This way of working provided a model for the future and the Healthwatch Dogwood’s manager told us that she wants to ‘do more targeted, specific work like the Audiology project . . . it comes from the bottom-up . . . [and] it’s about building the evidence base ourselves’ (fieldnotes, 28 October 2020).

Healthwatch Elmbridge: engaging residents on the social determinants of health in co-ordination with the local system

Healthwatch Elmbridge had, in recent years, expanded the sphere of its engagement work beyond the more usual Healthwatch focus of collecting local people’s experiences of health and social care services. Healthwatch Elmbridge had conducted several projects gathering views and experiences of what are commonly called the social determinants of health, for example income and job security, housing (overcrowding, etc.), access to green space and shops selling fresh vegetables (versus proximity to unhealthy takeaway shops) and air pollution. As outlined in the examples below, the holistic understanding of health influencing this engagement emerged as a result of Healthwatch’s collaboration with the local NHS, public health and local authority, and the well-developed local ICP (all of whom were invested in this ‘social’ approach to questions of health and well-being). The impetus also came from Healthwatch Elmbridge’s board members, who regularly discussed Healthwatch work in ‘social’ terms (e.g. wanting to explore the health and life experiences of people living in poor housing or who are subject to crime or air pollution).

For instance, from 2019 to 2020, Healthwatch Elmbridge was involved in planning and carrying out engagement work on the area’s new health and well-being strategy. Working in collaboration with the public health department, other local authority officials and the CCG, Healthwatch Elmbridge organised several day-long events at different libraries in the borough. The engagement activities consisted of Healthwatch staff talking at length to local residents (for 30–60 minutes) one on one about their lives, family and experiences of health, well-being, poverty, precarity, diet and environment. Healthwatch staff used a 20-page booklet to guide their questioning and in which they noted respondent answers. We attended planning meetings for this work and one of the engagement events in December 2019.

The health and well-being strategy engagement work built on an earlier project carried out by Healthwatch Elmbridge as part of the local consultation around the NHS Long Term Plan23 in May 2019. The engagement work was planned around talking to residents about their health at street markets in all four ‘localities’ of the borough. The locality focus emphasised Healthwatch Elmbridge’s desire to understand its area in more granular terms and draw out any differences that housing, wealth and environment had on people’s experiences and expectations around their health and well-being. Importantly, the data from this engagement work were linked in their report to ‘I statements’ (e.g. ‘I am supported to make healthy lifestyle choices’) developed by the local ICP to structure its outcomes framework.

As a way of concluding this section, in Box 10, we outline how our five study sites organised their engagement with Healthwatch volunteers.

FIGURE 5.

Healthwatch volunteers at the five Healthwatch study sites. All details correct as of January 2021. c., circa.

Summary

One of the key statutory functions of Healthwatch is to ‘obtain the views of people about their needs and experience of local health and social care services’. 46 Many Healthwatch organisations receive unsolicited feedback, conduct surveys of local residents and patients (both by type of service or type of user), carry out enter and view visits, and organise Healthwatch stalls in public places and events. However, as the examples above show, the strategies and practices of engagement are varied and are substantially determined by individual Healthwatch organisation’s organisational structure, funding and local landscape.

Healthwatch Ashton and Healthwatch Beecham provide an instructive comparison about how engagement is shaped by different levels of funding. The funding arrangements of Healthwatch Ashton meant that it could not initiate or substantially direct engagement activities itself. Rather, the main source of its engagement was work carried out by other organisations, such as local VCSE, that are granted money from the LRCV. This means that Healthwatch Ashton had little control over the design, execution and end results of the engagement that was carried out in its name. Conversely, Healthwatch Beecham – the best-funded Healthwatch among our study-sites – had a great deal of autonomy over the type of engagement projects it undertook. This autonomy extended to individual members of Healthwatch staff who were largely free to pursue projects based on their personal or professional interests (as long as the projects were regarded as within Healthwatch’s remit by senior managers, the board or the local authority commissioner).

Differential structures of funding also had an impact on how engagement work can be effectively managed. Therefore, although Healthwatch Cherryburgh was funded to employ a partnership manager to direct the work of JPB, Healthwatch Ashton had no additional resource to manage the LRCV money that it must distribute to VCSE organisations to conduct engagement on their behalf. Healthwatch Ashton recognised that this limits the potential of the engagement work in the ways described above. In fact, Healthwatch Ashton asked the local authority to allow it to use some of the LRCV money to employ someone to properly manage the engagement projects it funded, but the council refused.

The local health and social care landscape also influenced how engagement was initiated and performed. For instance, Healthwatch Dogwood’s manager emphasised that she preferred doing ‘bottom-up work’, such as the audiology project described in Healthwatch Dogwood: engagement project prompted by feedback from local people, as this work allowed them to carve out their own space for engagement. Healthwatch Dogwood’s engagement was rarely carried out in partnership with its major local stakeholders, which were dominated by a large and successful provider trust. The trust had a large engagement team and historically does not engage with Healthwatch. The trust have had diverging views about engagement and Healthwatch’s role locally. Healthwatch Elmbridge, on the other hand, had successfully managed to conduct engagement in ways that remain independent from the system, but still closely co-ordinated with it. This was largely because the key health and care actors had long become used to working in an integrated way and regarded Healthwatch Elmbridge as an equal and valuable partner.

Healthwatch Elmbridge: the community insights repository of patient and public experiences (quantitative and qualitative)

Healthwatch Elmbridge developed a comprehensive database of patient and public feedback on health and social care services. The database has become the central vehicle through which Healthwatch Elmbridge attempts to channel ‘the voice of the people’ to the local system.

The database contains coded qualitative feedback (e.g. free-text comments from surveys, patient stories) that is used to produce reports on patient or public views and experience on particular themes or services over a defined period of time. The coding is organised by different elements of a patient’s pathway and also includes additional codes that relate to the social determinants of health (poverty, clean air, housing, etc.). A single piece of feedback can generate several coded items, and each item is also given a positive, negative or neutral value. Healthwatch Elmbridge’s CEO explained the database further:

We have an [insights database] which is based on a Microsoft Access [Microsoft Corporation, Redmond, WA, USA] database and we have a coding frame that’s nationally recognised so any kind of data that comes to us, whether it is through surveys or through people who just contact us at the office, outreach focus groups, all those types of data that would normally be in very different formats . . . [A]s long as they express a value judgement of any kind of service, we can put them in the same place, code them in the same way and have some . . . automatically-generated Excel [Microsoft Corporation, Redmond, WA, USA] reports which we then use to do some more in-depth analysis.

Healthwatch Elmbridge CEO, cross-site JIF, 28 January 2021

Importantly, the Healthwatch Elmbridge team also includes feedback received by health and social care providers and commissioners. For instance, Healthwatch Elmbridge regularly asks for, and receives, patient experience data collected by the main hospital trust in the area, which is then added to the database. Healthwatch Elmbridge would like local partners to input the data themselves, run analyses and produce reports according to their own needs without the direct involvement of Healthwatch staff. To this end, Healthwatch Elmbridge’s research analyst runs regular database training sessions for local authority, public health, CCG and trust staff. The people who attend the training are attracted by the qualitative sources of such data, which they hope will complement their own largely quantitative data sets. As the research analyst explained to those attending one such training session we observed, the database’s ‘biggest strength is its very diverse range’. The research analyst emphasised that the multitude of data gathered together in this accessible database ‘creates richer and more relevant data sets’. However, the direct use by local health and social care system partners – unmediated by Healthwatch Elmbridge – is limited, despite two key partners (i.e. the CCG and the local authority’s public health directorate) paying to access it.

Nevertheless, the database is deployed in many arenas by Healthwatch Elmbridge’s staff themselves, and the data they extract and disseminate are used by their partners. For instance, Healthwatch Elmbridge sends out regular reports to providers and commissioners on themes specific to its service area and the data from these reports, produced by the database, are used by service providers. One such service provider is the local GP federation, which triangulates its own data with those produced by Healthwatch Elmbridge, and includes the data in its own analyses and reports. As Healthwatch Elmbridge’s CEO commented, ‘they think we’re reliable enough to be used for QI [quality improvement]’ (fieldnotes, 22 January 2020). Healthwatch Elmbridge’s CEO went on to emphasise that the GP federation was using Healthwatch’s data in an integrated way, which indicated for her the weight given to their data.

The database, therefore, fulfils two key functions in establishing Healthwatch Elmbridge’s authority to communicate ‘voice’. First (as in the example of the GP federation above), it translates individual qualitative comments into aggregated numbers that are more easily communicated to partners and more readily used in partners’ own projects and reports. The Healthwatch Elmbridge chairperson explained:

[The insights database] does reduce a lot of the stories that we capture to percentages and when we’re talking to the science-based people on the health and well-being board, they respond to ‘79%’ much more than ‘the lived experience of the people they tell us is this’.

Healthwatch Elmbridge chairperson, cross-site JIF, 28 January 2021

Second, the prominence of the database in Healthwatch Elmbridge’s work – and their reference to it in almost all the meetings we observed – means that the database contributes to establishing the basis from which Healthwatch Elmbridge speaks more generally:

[Our health and social care partners] recognise that we have a great evidence base and so therefore when I speak at the health and well-being board, I’m able to cite it and people know that I’m citing evidence.

Healthwatch Elmbridge chairperson, cross-site JIF, 28 January 2021

Healthwatch Beecham: an expansive use of residents’ panels

In contrast to Healthwatch Elmbridge, Healthwatch Beecham’s approach to evidence is almost entirely qualitative, based on the collection of the ‘lived experiences’ of local people, which are gathered through long-term in-depth engagement with specific subgroups of the local population. Healthwatch Beecham collects lived experiences through both staff-initiated projects, which usually involve interviews, and observations of people and services [e.g. among emergency service staff (see Chapter 5, Healthwatch Beecham: long-term in-depth engagement shaped by the interests of staff members) or among patients in a secure mental health unit], as well as through externally funded engagement activities (e.g. a panel to discuss the health-care needs of people with various forms of disability in the county). This latter case is particularly useful to illuminate how local people’s experiences are translated into evidence in Healthwatch Beecham, as well as what experiences count as evidence.

The panel is composed of members chosen by Healthwatch Beecham. The members are chosen not only because they have a particular form of disability or are the carers of someone living with a disability, but also because of the network of people they can involve in the work of the forum. For this reason, most panel members are representatives of communities and local charities addressing the needs of people living with specific disabilities (e.g. visually impaired, veterans). Panel meetings are only ‘the beginning of our engagement’, as Healthwatch Beecham’s engagement officer, who was in charge of the project, explained to us. General meetings are used to raise issues and themes that are then explored in more detail in specially organised focus groups attended by a larger number of people affected by that specific form of disability. Action points and solutions are also usually discussed and planned outside panel meetings and in collaboration with the communities and organisations with which panel members are associated.

The integration between the work of the panel and the more granular engagement carried out through specific focus groups makes it possible for Healthwatch Beecham to translate individual lived experiences of panel members into forms of evidence about the collective experience of a broader network of local people affected by a specific condition. This was considered to be important by both Healthwatch staff and members of the panel who, in several instances, discussed with us how a single individual’s lived experience could not be considered a good enough form of evidence in itself. Discussing the first meeting of the forum, when panel members were recruited simply based on their conditions rather than based on their ability to link with a broader network of relevant people and organisations, a panel member told us:

You had other people in that room that day who just wanted to speak about their specific – not people who have got the same injury as them or disability as them, but their specifics, so there was one guy who said ‘I have an issue with my local bus service’, you know, that doesn’t apply to anyone else in that room, or the thousands of people that they’re representing – that is one specific issue and that could take up 10 minutes talking about that. I sat there thinking if you were to do this for everybody’s specific issue you’ll never achieve anything, not possible, you know, and I fed that back at the time, I said, you know, ‘you have to have a fixed agenda, you have to have people submit what they want to talk about in advance, because if you just have it as an open forum you ain’t ever getting anywhere’.

Healthwatch Beecham’s forum participant, interview, 29 October 2020

In Box 11, we provide an example of the work of the panel to address the concerns of visually impaired residents during the early phases of the COVID-19 crisis.

In the next section, we present some of the themes discussed in the JIFs.

The nature of Healthwatch evidence

Most Healthwatch participants at the local JIFs were clear that using a diversity of qualitative approaches to collecting and communicating patient and public voice was desirable and that no one approach should necessarily dominate. Healthwatch Cherryburgh’s engagement manager, for instance, stated that her Healthwatch produced evidence through a combination of all the ways described in the document presented, except for the insights database. Most Healthwatch and external stakeholders alike emphasised the value of the qualitative nature of the evidence Healthwatch could provide to the system. For instance, the local authority commissioner of Healthwatch Dogwood discussed how qualitative data about the aspirations of local people relating to their long-term care requirements as they age might help the local authority better plan its market position statement for providers:

I quite like the idea of the qualitative reports based on . . . long-term research, particularly with some of the issues that are going on in Dogwood and some of the impact of COVID around care homes and the longer-term ramifications for care homes . . . we have to start planning the services that we’re going to be delivering in the future, that we’re going to be commissioning in the future.

Local authority commissioner, Dogwood local JIF, 26 May 2021

These qualitative data were also welcomed by Healthwatch Dogwood’s manager who foresaw new avenues for improving the impact of Healthwatch through working in this way:

I think that qualitative[ly] asking people about their aspirations about services is really, really positive and I think because . . . that could lead directly into an impact which is helping to shape a market positioning statement, so effectively a commissioning position . . . I think that’s a really interesting approach to Healthwatch work.

Healthwatch Dogwood manager, Dogwood local JIF, 26 May 2021

The crucial importance of integrating the qualitative ‘lived experience’ of local residents and service users for planning changes to the way health and care is delivered was echoed (perhaps more forcefully) by an ICS programme director who attended Healthwatch Beecham’s JIF:

[W]e need to kind of be really, really clear that the transformation process includes lived experience, that lived experience should be independent and actually should have that diversity as well. If we’re not investing in that lived experience then we’re not really properly going about the way we’re doing transformation.

ICS programme director, Beecham local JIF, 25 May 2021

This commitment to ‘lived experience’ expressed by the ICS programme director aligned well with Healthwatch Beecham’s long-standing focus on this particular way of conducting engagement and communicating evidence.

This type of mutual agreement between Healthwatch Beecham and its key external stakeholders was also evident at Healthwatch Elmbridge’s JIF. However, although the participants at Healthwatch Elmbridge’s JIF agreed about the importance of rich and qualitative ‘lived experience’, Healthwatch Elmbridge and its stakeholders alike expressed the need for qualitative and quantitative data to work together. Discussing Healthwatch Elmbridge’s insights database, the area’s GP quality lead lauded the blend of insights it made possible:

[F]or me the balance of the narrative with the quant[itative] stuff is really powerful and it’s something that I think it would be a massive loss for us as an organisation to not have that stuff at our fingertips and it’s really interesting when we’re working in other [areas] that don’t have that data to work with, you’re kind of scrabbling around for stuff . . .

GP quality lead, Elmbridge local JIF, 21 May 2021

Moreover, Healthwatch Elmbridge discussed the ways in which its quantitative evidence from the insights database could be used alongside more qualitative ‘direct experience’ evidence of resident or user experience provided by specialist voluntary sector organisations. This had the effect of lending more weight to such experience in the eyes of key audiences, such as the area’s health and well-being board:

I think it’s worked quite well when the actual qualitative voice or the user voice has actually come from the voluntary sector from within particular specialist groups . . . because they are specialist groups who represent that voice, but what we’ve been able to do is basically provide a broader picture to that voice to say ‘well let’s reflect the voice of the wider group’ and using the community insights to underpin the personal story . . . and using ours to give it a bit of clout.

Healthwatch Elmbridge CEO, Elmbridge local JIF, 21 May 2021

Healthwatch Elmbridge’s insight database attracted some interest at the other study site JIFs. The research manager at Healthwatch Beecham, for instance, said that, although such a database ‘would be the dream’ for him, he foresaw significant problems in its practice, particularly regarding the uniform and consistent coding of qualitative comments if more than one person was involved in it. Healthwatch Cherryburgh’s engagement manager suggested that the resources needed to manage such a database would mean that her Healthwatch would be unable to do much else. The area’s director of public health added that he valued Healthwatch Cherryburgh’s flexibility in its approach and found the idea of a database too ‘cumbersome’.

Broader issues relating to Healthwatch research processes were also discussed at some of the JIFs. Healthwatch participants at Healthwatch Beecham’s JIF called for a more professional scientific approach to the collection of data – such as proper sampling of participants or informants for surveys, focus groups or interviews. Healthwatch Beecham’s CEO argued that such ‘professionalisation’ of evidence would make it more effective:

I know I’m in the privileged position of having two research doctorates on my team and two teachers on my team – but that’s something we could definitely support the wider Healthwatch in, because they have access to such a wide group of stakeholders, they have the time to listen to those stories, so actually being able to professionalise that experience gives it a lot more rigour and makes it a lot more robust, so I think that’s definitely something we should explore moving forward.

Healthwatch Beecham CEO, Beecham local JIF, 25 May 2021

A Healthwatch Elmbridge board member – who is a social science researcher and in the past has pushed for such scientific techniques to apply to the work that Healthwatch Elmbridge conducts – also observed that any method, qualitative or quantitative, must be tailored to the particular question being asked:

. . . a question comes on why you’re doing what you’re doing, what’s the question, people asking the question, people asking will then dictate what methodology you use, so it’s not a case [of] do we want a story or do we want numbers, it’s what’s the question and then depending on the focus of the question we’ll say ‘actually a quantitative methodology will be more effective than a qualitative one or vice versa’.

Healthwatch Elmbridge board member, Elmbridge local JIF, 21 May 2021

Panels as a source of insight

The idea of user panels as outlined in the resource document (see Appendix 6), proved popular among Healthwatch staff and external stakeholders at most JIFs. Healthwatch staff and external stakeholders liked the concept of the panel as a partnership between local authority, VCSE and Healthwatch, and agreed that it would mitigate some of their past problems with this form of gathering service user and resident insight. Healthwatch Elmbridge’s CEO remarked:

My initial thought about the first idea, the one with the panels, was that we do run for example a mental health task group, we have [a young persons group], so we kind of already are doing a little bit of that but I quite like the aspect of the council people being involved and attending the meetings for these types of panels, actually having transparency about what happens to their insights and their visions after the people from the council hear about them.

Healthwatch Elmbridge CEO, Elmbridge local JIF, 21 May 2021

The chairperson of the health and well-being board in Elmbridge agreed that panels structured in this way could be an effective way to access experiences:

I think some of that qualitative experience and the panel approach makes some of those stories really compelling which forces that change.

Councillor in Elmbridge, Elmbridge local JIF, 21 May 2021

At Healthwatch Dogwood’s JIF, the chairperson of Healthwatch Dogwood also suggested that panels, along the lines of that described in the resource document (see Appendix 6), might be a means of reinvigorating PPGs in the newly formed PCNs:

. . . there’s huge potential in terms of Patient Participation Groups which might morph into sort of mini residents’ panels and so on. So I think there’s a huge amount of work potentially with the primary care networks, the residents’ panels potentially in those areas, PPGs.

Chairperson Healthwatch Dogwood, Dogwood local JIF, 26 May 2021

He also pointed out that Healthwatch and its partners in the health and care landscape should co-ordinate to ensure that there would not be an unnecessary duplication of panels across different institutions. The council commissioner who worked with Healthwatch Beecham on setting up the programme of panels (described in Appendix 6) summarised the approach as enabling bottom-up, user-identified issues while allowing the local authority to ask about needs and experiences on topics that are strategically important for it:

. . . because that forum was always – in our design of it – meant to create the space for both, so that the forum members could table themes that were absolutely coming from that unsolicited end and the independence side in terms of the things that people say are most important to them to raise, versus us creating the space for the things that strategically are important for us to work with people on in relation to people with lived experience, so I think it is about both.

Local authority Healthwatch commissioner, Beecham local JIF, 25 May 2021

Different sorts of evidence: locality and the social determinants of health

The resource document (see Appendix 6) outlined Healthwatch Elmbridge’s work, which involved examining the varying health needs and experiences of populations based on where they live and other social determinants of health (see Chapter 5 for a fuller exposition). This was the topic of much discussion at the Healthwatch Beecham and Healthwatch Dogwood JIFs in particular, as this sort of approach is not generally adopted by Healthwatch Beecham and Healthwatch Dogwood. Nevertheless, the approach was endorsed by external stakeholders. Therefore, at Healthwatch Beecham’s JIF, an ICS programme director said that a localised approach to collecting and communicating lived experience would be valued by the system:

[W]e need that range, there’s no one type of data or information to tell the story, we need quantitative information, qualitative information, but as we’re starting to look at for example data from population health management approaches and those sorts of things, it’s the story that’s so important and to help to add that interpretation because there is a risk there, isn’t it, that we don’t really properly understand the story and make assumptions about that, so I just absolutely endorse the fact that if we’re thinking as a system much more locally and place based and neighbourhood based then we need to understand stories at place and neighbourhood base as well.

ICS programme director, Beecham local JIF, 25 May 2021

An approach that took account of both locality and the wider determinants of health was achievable and desirable for this ICS manager, who had experience of (1) the communities’ health and care needs during the COVID-19 pandemic and (2) Healthwatch Beecham’s emphasis on collecting and communicating people’s lived experiences:

I think the story over the last year and a half in particular has been a big reminder about just how we need to move away from dividing people up and putting them into different categories and boxes. Certainly the recent experience about the sheer intersectionality of a lot of the issues that our communities are facing needs to be the thing moving forward. So I’d just make a plea for kind of not trying to divide things up, but almost embrace that complexity of people and their lived experience because that, at the end of the day, is what we’ve got to deal with and respond to as a health and care system.

ICS programme director, Beecham local JIF, 25 May 2021

Likewise, a CCG manager at JIF Dogwood encouraged Healthwatch to consider the wider determinants of health, echoing what other CCG officials had told us in interviews during fieldwork:

I think it is more around, there needs to be more focus on the wider determinants, it’s not all about health services because obviously all of the wider determinants have an impact on how and why people need the services.

CCG manager, Dogwood local JIF, 26 May 2021

Representatives from Healthwatch Dogwood seemed open to the possibility of exploring this, but indicated that this additional work would need to be resourced. Healthwatch Dogwood’s local authority commissioner commented on how this would be examined holistically in the context of the next specification for the Healthwatch contract in her area:

. . . but as the commissioner of Healthwatch, it is something that we’re going to be looking at going forward because obviously we have to look at the service specification, what Healthwatch does and this is probably very timely in taking forward that piece of work as well. So I mean I alluded to it before around the longer-term pieces of work but obviously what we need to look at as well is the resources that would be required for that and I’ve listened to what other partners have said about being involved in work around the wider determinants and I do actually think that is something that potentially could inform quite a lot of the work that we do within health and social care.

Local authority commissioner, Dogwood local JIF, 26 May 2021

Therefore, although stakeholders recognised the potential value of Healthwatch collecting more experiences beyond those directly of care services they had received (or would like to receive), stakeholders also recognised that Healthwatch, as currently commissioned in that area, would not be able to fulfil this desire.

How to provide evidence at the integrated care system level?

At each JIF, we also discussed the involvement of Healthwatch in the ICS and asked whether or not the nature and level of insight Healthwatch conventionally provide would have to change to meet the demands of working at a larger scale. At all JIFs, both Healthwatch representatives and key partners (sometimes including ICS staff) emphasised that they valued Healthwatch’s local focus and ability to provide independent public and patient voice:

I’ve been to meetings with other systems and I can’t understand why or how it is that local Healthwatch are not part of their system arrangements because they have a statutory role, so for the public, you know, this is the route through which you can actually have your voice listened to, so surely we need to respect the statutory role of Healthwatch as much as the statutory role of a local NHS trust or commissioners or the county council, whatever, I just think it’s time that that needs to be written down properly and followed.

ICS programme director, Beecham local JIF, 25 May 2021

Healthwatch Beecham and Healthwatch Elmbridge were involved in their respective ICSs to a much greater degree than our other study sites, largely because of the more advanced nature of their development. The insights database used by Healthwatch Elmbridge was now being used at an ICS level by all the Healthwatch organisations in that particular ‘footprint’. From Healthwatch Elmbridge’s perspective, this and other ways of collaborating on collecting and producing evidence has led to an increase in Healthwatch influence:

I was just going to say I think that Healthwatch’s influence has actually increased since the ICS and the fact that we’re working more collaboratively almost gives us more clout and there isn’t the sort of divide and rule kind of thing, because we’re able to join up our evidence that evidence has more weight because there’s more of it. And so instead of having, you know, eight Healthwatch that are all doing their own thing, we’ve got eight Healthwatch that are doing the same thing. And we’ve got a quite powerful body of evidence to which we could be – I think what I’d like to see is feeding into what will be an unprecedented sort of level of service redesign post COVID and that our evidence can be used to support genuine community leadership and the designing of services across a whole range of health and social care providers.

Healthwatch Elmbridge CEO, Elmbridge local JIF, 21 May 2021

The ICS representative at the JIF agreed:

I think [it] has really been of value, the way that the Healthwatches have particularly come to work together on the community insight system and, as a result of that, the development of relationships across all the Healthwatches and a really quite strategic way of thinking about things.

ICS manager, Elmbridge local JIF, 21 May 2021

This way of working is challenging, however, and requires financial and other support, as Healthwatch Dogwood’s chairperson pointed out:

. . . it is not for one single Healthwatch to undertake that. Healthwatches have to work together and if Healthwatch is to pass on a consistent, coherent, collective view to these partners and these systems, then that takes a lot of time to get representatives from [all the] Healthwatches in the [footprint] to get them to work together for a collective evidence based voice. There’s a huge amount of work in that for somebody somewhere and I think that’s the key issue.

Healthwatch Dogwood chairperson, Dogwood local JIF, 26 May 2021

Who is your audience?

We also asked Healthwatch representatives at the local JIFs about their key audiences for the evidence they collect from local residents and how different audiences might require different engagement. Reflecting on their experience of presenting evidence to key committees during the COVID-19 pandemic, Healthwatch Elmbridge’s research officer described the ways in which their reports became shorter and more graphic-heavy so that their audience – public health, CCG, health providers and local authority staff working under pressure – could digest key points quickly:

. . . what happened with us was that our reports became a lot more infographic, like, you know, in terms of my own practice I found myself almost never using Word [Microsoft Corporation, Redmond, WA, USA] again. Nowadays I just do the report directly in infographic format in Canva [Canva, Sydney, NSW, Australia]. Having this very infographic approach that’s very tailored for meetings and presentations and very fast skimming actually made us better and more effective.

Healthwatch Elmbridge staff, Elmbridge local JIF, 21 May 2021

Reflecting on Healthwatch’s dissemination strategies, the chairperson of the health and well-being board at Healthwatch Elmbridge’s JIF suggested that, in her area, ‘some of these stories can be told more and louder’. When we asked Healthwatch Elmbridge’s CEO about this comment, she interpreted it as follows:

. . . the sense that I get from her [is] that she sees Healthwatch as a really important partner to her role and that she sees that somehow we can work with councillors and almost giving an independent voice so that they can basically perform their role better because obviously we’re external to the council staff and therefore give them a slightly different perspective, but also it’s a really quick way of them of understanding a little bit about what constituents are saying, you know, because for them it’s their voters really isn’t it.

Healthwatch Elmbridge CEO, interview, 3 June 2021

By way of striking contrast, at Healthwatch Beecham’s JIF, a key local partner – the ICS – suggested that Healthwatch widen its audience to include the health and care sector to a greater extent:

And, you know, please don’t underestimate the importance of having really high-quality products that enable that story to travel and to be heard by a range of different audiences, because it’s as important to, kind of, you know, the health and care kind of community to hear those stories as for the public and MPs [Members of Parliament] and so on as well.

ICS programme director, Beecham local JIF, 25 May 2021

This contrast highlights the range of work that Healthwatch carries out to communicate evidence effectively to a wide array of audiences.

Insights from the Healthwatch Involvement Panel to refine statements of good practice

We received comments from five HIP members. One HIP member expressed concerns that the statement did not make reference to the impact of the financial challenges experienced by local Healthwatch organisations, which was discussed by many HIP members during the course of phases 2 and 3. We responded to this concern by clarifying that the issue of budgetary constraints was addressed and discussed in the main body of the report (see Chapter 5, Funding arrangements) and that these statements focused specifically on highlighting good practice that local Healthwatch organisations may themselves implement or seek additional funding for.

The other four HIP members were broadly supportive of the statements. However, we received comments on the following aspects.

Three members of the HIP warned about the expansion of Healthwatch activities to include investigations of the social determinants of health, which, although valuable, were not included as part of Healthwatch’s official remit (defined by statute). The HIP members interpreted Healthwatch’s official remit as being focused on engaging people about their experiences of care services, as one HIP member stated:

I would be reluctant to promote investigation of social determinants without some reflection that it’s a grey area in terms of the statutory functions.

HIP member 2, e-mail communication, 29 June 2021

The HIP members suggest, however, that they would be willing to conduct such work, as long as it the local authority funded it separately and in addition to their core contracts to fulfil their statutory functions. Responding to the e-mail thread, a fourth HIP member disagreed with this assessment, arguing that local authorities were entitled to commission Healthwatch in any way they chose:

Although we do have our statutory duties, I’ve rarely seen them enforced. The only paymaster is the council. Accordingly, we can to a large degree influence our own direction if we satisfy the commissioners. HWE [Healthwatch England] can suggest and guide, but the paymasters ultimately decide.

HIP member 1, e-mail communication, 30 June 2021

As a result of this discussion, we modified the wording of statement 2 as follows. In addition, the following amendments to statements were made:

• One member of the HIP observed that engaging formally with VCSE organisations to gather evidence on Healthwatch’s behalf (either through panels or commissioned work) fell within the statutory function of ‘promoting, and supporting, the involvement of local people in the commissioning, provision and scrutiny of local care services’ (HIP member 2, e-mail communication, 30 June 2021). Therefore, we modified statement 5 to emphasise this aspect and reassure Healthwatch that it could legitimately proceed in this way.

• The same HIP member asked that statement 3 more clearly explain that co-ordination between Healthwatch organisations would better help ICS leaders ‘get a fuller picture of the experiences, needs and wishes of the population they serve’ (HIP member 2, e-mail communication, 29 June 2021). Therefore, we changed the wording of statement 3 to emphasise this point.

• Another HIP member proposed, in relation to statement 5, that processes of co-production would be preferable to panels and we now mention co-production as an important element of a panel process.

Statements of good practice for the gathering and use of patient and public voice

Finding the voice of the people

Implications for Healthwatch of intensification of work

This intensification of work had several implications. One generally positive implication of increased Healthwatch activity was that its profile had been raised with its stakeholders and with members of the public. This raise in profile was a result of the accessibility of virtual forms of engagement and the new responsive ways of working with local pandemic management partners, as one HIP member, a Healthwatch CEO, described:

I would say there’s definitely been a shift. We’ve definitely got our feet underneath the table. Before, we were always forever knocking on doors until we were let in, but now we’re actually being invited in, you know, rather than bulldozing our way through!

HIP member 3, interview, 3 February 2021

Several Healthwatch managers and CEOs reported that they were able to reach larger numbers of local residents through varied forms of digital engagement. As larger numbers of local people now attended virtual events, health professionals and managers increasingly found Healthwatch events more useful than in the past. For instance, the same Healthwatch CEO quoted above described how her team’s use of the Facebook Live platform not only attracted a large local audience but raised their profile with clinicians:

. . . we have been so busy and we’ve adapted so well and we’ve been doing live Facebook sessions and we’ve been attracting more and more people to talk to us and then clinicians because of the live Facebook have been coming along saying ‘oh, that’ll be great for the flu vaccinations, we can do question and answers and things like that’.

HIP member 3, interview, 3 February 2021

Another Healthwatch CEO said that although he had struggled in the past to get residents to attend in-person engagement events, he was astonished at the numbers now attending virtually:

. . . by moving business online, I mean [ . . . ] the numbers that we can reach out to digitally just surpass the numbers that we would see conventionally. So, for example we did a talk to the University of the Third Age; we had 87 people on the call. We’ve never had 87 people turn up to a village hall to talk about Healthwatch. Now I appreciate that a lot of those people have just probably got nothing else to do on a Wednesday afternoon than to join a Zoom call, but the numbers attending our public board meetings have gone up.

HIP member 6, interview, 8 February 2021

Similarly, Healthwatch Elmbridge held a public lecture given by a renowned specialist in health inequalities that attracted over 400 attendees, something Healthwatch Elmbridge’s chairperson said would have proved impossible were it to have been held face to face:

Now, I think we’re braced with the pandemic on this one because we would not have gone out and hired a hall for 500 people, you know, we wouldn’t have been able to afford it. Zoom has its upsides too.

Healthwatch Elmbridge chairperson, interview, 5 October 2020

Moreover, the newer, more responsive way of working, with quicker turnaround times, has also had the effect of generating more awareness of Healthwatch’s work and usefulness to local health and social care systems, as one Healthwatch CEO said:

I’m really aware that during the pandemic I have tried to take every opportunity to increase awareness of us as an organisation because there’s been an appetite to understand things in perhaps a much more live way than we would normally get, and a much less sort of overly constructed way as well. So people want things a bit faster, a bit more raw, kind of like ‘help us right at this moment’ and I think that’s produced some really interesting opportunities for us and I think that’s been great in terms of our awareness in our local places.

HIP member 7, interview, 15 February 2021

One consequence of the increased awareness of Healthwatch in various locales in England was that Healthwatch’s staff had to learn to navigate new areas of activity and new relationships and this meant that, in some instances, local Healthwatch organisations found themselves in uncomfortable territory (e.g. being solicited by regional or national media about elements of the local pandemic response while having to avoid appearing overly critical or political). On a more technical level, Healthwatch staff had to spend time learning new ways of organising events online, as in the case of Healthwatch Elmbridge’s public lecture, which involved training facilitators of Zoom breakout rooms, for instance.

Healthwatch staff not only had to experiment with digital engagement, they also had to learn how to represent Healthwatch in digital meetings without some of the benefits of ‘corridor chat’, etc., as one Healthwatch member of staff put it:

I feel almost slightly you have to be a bit more shouty – I don’t mean shouty in an aggressive way – but a bit more kind of ‘hello it’s Healthwatch’ and say something Healthwatch-ey, rather than it being as easy to join the meeting, get the feel of the meeting, use a bit of body language and join the group a bit, I mean, we all have different styles, but I don’t think I would join a group and then start rocking the boat.

HIP member 4, interview, 10 February 2021

The combination of the greater awareness of Healthwatch’s potential, the accessibility provided by digital forms of engagement and the new ways of working that this continuously entailed led to a cycle of intensification of work for Healthwatch during this period. Compounding this was that many Healthwatch staff found it difficult to refuse invitations to meetings during this time. There was a sense that Healthwatch had an important role to play in local responses during such an unprecedented health emergency and there was, therefore, a strongly articulated ethics dimension to Healthwatch work, as a Healthwatch CEO and HIP member described:

. . . it’s not necessarily that there has been an external sort of ‘you have to do more’, it’s more kind of, like, ‘at this time if we’re going to be helpful and we’re going to get it right, we need to do more’ – and so I am thrilled to work with people who have that in their DNA but at the same time I worry all the time about people ending up off on long-term sick because they have taken on so much and they’re under so much strain that actually they’re not going to be able to manage when something does happen that’s challenging.

HIP member 7, small-group discussion, 5 October 2020

As the quotation above highlights, this intensification of Healthwatch work raised significant issues of staff exhaustion that worried many Healthwatch managers and CEOs and, in autumn 2020, led them to question the sustainability of this pace of work. This commitment to being involved meant that Healthwatch staff felt ‘guilty’ if they rejected offers of participation in health and social care:

[There is] this feeling of guilt about taking time off . . . when there’s such a thing happening as there is and everybody else is out there risking their lives you’re thinking it would be wrong to take time off.

HIP member 8, small-group discussion, 14 October 2020

The increased accessibility of those with whom Healthwatch maintained relationships and its higher profile, as well as the ethics commitments to the Healthwatch work and mission in a time of crisis, all contributed to the intensification of activities in summer and autumn 2020.

Self-reported impact in the survey

There are limitations to the usefulness of this kind of self-reported information on impact. For instance, we were unable to draw conclusions from the survey data as to whether or not particular organisational arrangements and relationship types lead to better impact among our local Healthwatch respondents.

Study site characteristics

There were two limitations relating to our study sites.

First, we did not ultimately succeed in recruiting a Healthwatch site with a host that held several Healthwatch contracts. Although we initially secured a local Healthwatch site with this characteristic, the host lost many of its contracts in the period between recruitment and the start of fieldwork. We approached other Healthwatch sites that matched this profile, but we were not successful in recruiting them. However, we decided that working with a Healthwatch site whose host had recently lost Healthwatch contracts would be of value to the broader aims of the study and we, therefore, aimed to recruit one of the remaining local Healthwatch sites of the host organisation we had initially approached. Importantly, this local Healthwatch site has one of the smallest value contracts in England and staff were enthusiastic about participating. Nevertheless, we ensured that the HIP contained two local Healthwatch sites that were hosted by organisations that hold more than four contracts and this mitigated the limitation to a certain extent.

Second, we would have liked to recruit a local Healthwatch site operating in a large urban area outside London. The Healthwatch site we initially recruited (referred to above) fulfilled this criterion. However, when we lost the study site because of the provider changing, we had already recruited our other study sites and, therefore, had very little flexibility to re-organise the selection. Having such a Healthwatch site would have given us a view of the challenges faced in urban areas outside London. We mitigated this limitation by including several Healthwatch sites from large urban areas in the HIP.

Involvement of local residents in the study

Although we observed interactions between Healthwatch staff and members of the public, and had interviewed and spoke informally to local residents and volunteers at all of our study sites, the direct voice of local residents is not prominent in this report. This is for two main reasons. First, the principal aim of the study was to explore and enhance the practices and strategies of local Healthwatch organisations. Second, although communicating the voice of local residents is a key aspect of Healthwatch work, residents themselves (other than volunteers) are not involved (with a few exceptions) in Healthwatch’s everyday work.

Effect of the COVID-19 pandemic in England

The COVID-19 pandemic made access to people and meetings more challenging during this time, as key people in the NHS, local authorities and Healthwatch were busier than before the emergency. Moving our phase 2 research online in 2020 resulted in less textured data from our study sites. Although we attended and observed meetings online and talked to staff before and after the events, we were less able to take advantage of the serendipitous and unplanned encounters, conversations and meetings that are possible in real life. This also reflected the new ways of working that our participants (including Healthwatch staff) were experiencing in their own working lives. Consequently, this may have resulted in us obtaining less rich data in that latter period of phase 2 than we might otherwise have obtained.

Review basis for national funding allocations to local Healthwatch organisations

There is significant variability in the work of Healthwatch that raises questions about whether or not there is equitable treatment of people across England in their ability to participate effectively in local health and social care planning and provision. A key element of this variability is the funding of local Healthwatch organisations. Our study shows that funding arrangements significantly shape everyday strategies and practices of collecting and transmitting patient and public voice. Healthwatch organisations with larger-value contracts can provide a more varied and specialised service to local people and the health and social care system. In addition, these larger Healthwatch organisations are better able to attract additional external funding, therefore further entrenching their differential abilities. Policy-makers and Healthwatch commissioners may want to consider the effect of different funding arrangements on exacerbating the variability of local Healthwatch organisations across England, therefore determining differential outcomes in Healthwatch’s ability to represent patient and public voice in each area and across England as a whole.

Clarify the role of Healthwatch in the changing commissioning landscape

Local Healthwatch organisations’ operations are determined by the different institutional landscapes in which they work. Changes in health and social care commissioning and provision – particularly the development of ICSs – raise questions about Healthwatch’s institutional location and role, which has remained formally unchanged since 2012. For instance, Healthwatch is granted a seat by statute on health and well-being boards. However, given not only the development of ICSs but also of other local forms of partnership, health and well-being boards may not be the optimal forum through which to provide formal contributions. Although Healthwatch was mentioned in the 2021 White Paper24 as a way in which public and patient voice could be represented at the ICS level, its involvement was not formally mandated in the subsequent Health and Care Act 2022. Certainly, Healthwatch’s involvement in integrated care to date has been variable. By reviewing and clarifying Healthwatch’s role in these new local and regional partnerships, policy-makers and commissioners may ensure that Healthwatch can more effectively influence the decision-making process on behalf of the patients and residents it serves.

Retain the statutory role of Healthwatch

The statutory nature of Healthwatch’s function is key to its ability to represent local voice to its health and social care partners. The fact that Healthwatch is legally mandated and that local Healthwatch organisations have statutory powers means that it has an official status that distinguishes it from other VCSE organisations, and this was highlighted during the COVID-19 pandemic when the health and social care system came under extreme stress; in most places during this period, Healthwatch was treated as a partner in the system’s pandemic response. This is important to note for various Healthwatch stakeholders, given the changes to the health and care system authorised by the Health and Care Act 2022. Likewise, local Healthwatch organisations may wish to reflect on how they made use of their formal status during the pandemic and how they can learn from this in the future, as this would enhance their participation in existing and new spaces so that the voice of the public is not neglected in local decision-making processes.

Recognise the important local co-ordinating role of Healthwatch

Many local Healthwatch organisations have successfully embraced a co-ordinating role between key stakeholders (both statutory and from the voluntary sector) in local health and care systems. However, although this role is not formally included in Healthwatch’s statutory functions, it nonetheless proved key in ensuring the involvement of local communities and addressing the needs of vulnerable populations, particularly in the COVID-19 pandemic response. Healthwatch may enhance its ability to represent local voices by actively cultivating this function to facilitate the participation of community groups, especially those that might otherwise go unnoticed. Local stakeholders, including Healthwatch commissioners, may be able to better support local Healthwatch organisations and their missions by acknowledging the importance of this function and the resources it requires.

Producing deep and broad findings is possible in varied organisations, such as Healthwatch, if researchers regularly involve many non-study site participants to sense-check data and to offer their own experiences and analysis as data. The combination of research methods and our innovative and sustained engagement with relevant stakeholders, such as the HIP and JIFs, ensured that our findings were locally and nationally relevant, contextually sensitive and generalisable. These engagements strengthened collaborations between the study team and the study participants as well as among participants themselves (as in the case of our HIP members). These engagements also contributed to participants’ ownership of the research process, making study outputs more clearly useful for them.

Discussion of pre-circulated Healthwatch study site profiles

An objective of the cross-site JIF was to provide an opportunity for study sites to learn about each other’s organisational and funding arrangements, relationships, and daily strategies and practices. Until then, Healthwatch study sites had been kept anonymous from each other and participants were keen to learn the identities and activities of the other participating study sites. Based on some research and team members’ previous experience with holding JIFs40 we concluded that asking each Healthwatch team to present this information themselves at the workshop would be passive, time-consuming and subject to variation in quality and format, particularly given the constraints of holding the workshop virtually. To allow for participants to be actively engaged in the workshop, we decided to pre-circulate key information about each Healthwatch site’s structure and organisation by way of five ‘Healthwatch profiles’; that is, one for each study site. Participants were asked to read the profiles before the meeting and prepare three comments or questions to ask each other based on this information. The activity allowed the research team and JIF participants to gauge what participants found interesting about each study site’s structures, strategies and practices. Each Healthwatch profile consisted of the following seven elements:

1. general information about each Healthwatch (e.g. name of the local authority, whether that Healthwatch was hosted or standalone and a brief 50-word outline of the history and characteristics of each organisation/host organisation)

2. the composition and role of the Healthwatch/host organisation board

3. number of staff, FTE and roles

4. number and type of volunteers, as well as a brief 50-word description of their level of involvement in the organisation

5. financial arrangements (e.g. contract or grant, funding amount, length of the contract, amount, type and source of external funding if received)

6. outline of the key feature of each Healthwatch’s institutional landscape

7. ‘talking points’ that mentioned a noteworthy aspect of each Healthwatch’s practices and strategies.

Presentation of emerging themes from fieldwork

During the workshop, the research team gave two presentations, discussing the following four inter-related emerging themes from the fieldwork:

1. relationships and ethics

2. scale and scope

3. engagement

4. volunteering.

The emerging themes were produced through discussions among members of the study team over several meetings in December 2020 and January 2020. A summary of the four themes was shared with all participants before the cross-site JIF and included research of some key questions that guided the study team’s analysis in relation to each topic. A copy of these summaries is included in Appendix 4. We wanted to check that our overall approach and emerging findings were accurate and relevant to Healthwatch study sites before drafting our report. The purpose of the presentation (and of the JIF as a whole) was to test if the kinds of analysis and ideas we were producing, and which we considered valuable, would be of interest to Healthwatch study sites or, alternatively, would need refining to make them more relevant to Healthwatch daily practice.

‘Provocations’ activity

After presenting the emerging themes from fieldwork, we held two small-group discussions of four ‘provocations’ directly relating to the topics presented. The ‘provocations’ were statements designed to spark debate among JIF participants. They were formulated by Amit Desai and Giulia Zoccatelli and were presented to the whole study team during a meeting held to plan for the workshop. Wording was subsequently refined by the other members of the study team to ensure maximum benefit from the ensuing discussions. The four provocations were as follows:

1. Healthwatch should refrain from seeking additional commissioned work from local stakeholders. This constraints Healthwatch’s independence and its ability to hold the system to account.

2. If decision-making processes move to the level of ICS or merged CCGs, the work of local Healthwatch will become irrelevant.

3. There is little point in gathering health and social care experiences from a large number of undifferentiated service users with the aim of improving the quality of care. Healthwatch must focus on specific marginalised groups in society to help the system address health inequalities.

4. Volunteering in Healthwatch is more trouble than it’s worth, both for the organisation and for the volunteers themselves. If Healthwatch engaged the public effectively and comprehensively, it would have no need of volunteers.

Participants were divided into three groups (‘breakout rooms’), each of which contained a representative from each different Healthwatch site, and were chaired by Glenn Robert, Graham Martin and Sally Brearley. The groups discussed each provocation for 10 minutes, with a short summary of the discussion presented to all JIF participants by group chairpersons after each round. The entire JIF, including the breakout rooms, were recorded and transcribed.

Presentation on Healthwatch and the study

The study team gave a 15-minute presentation about:

• aims of the meeting

• historical overview of Healthwatch and its statutory functions

• study aims and objectives

• study methods and existing data sources

• study outputs.

At the end of the presentation, the team asked for comments and took questions from the audience.

Discussion about different types of evidence collected by Healthwatch

The plenary discussion was based on the content of a document prepared by the study team, which detailed several ways in which Healthwatch study sites produce evidence to reflect the views and experiences of their residents. The material in this document was sourced from data from our phase 2 fieldwork. The document was adapted for each JIF to present and discuss ‘ways of producing evidence’ less commonly used at that Healthwatch study site. The team circulated the document via e-mail the day before the JIF. Participants were able to read the document ahead of the meeting, but time was also allocated during each meeting for participants to read the document, make notes and prepare questions.

Amit Desai and Giulia Zoccatelli chaired a plenary discussion that involved Healthwatch staff, board members and local stakeholders taking part in the meeting. The discussion took between 60 and 90 minutes (depending on the overall length of the meeting and as agreed at each Healthwatch) and was structured around the following questions:

• How do these different approaches compare with current practices used by your local Healthwatch?

• From your different perspectives, would any of these be desirable approaches for your local Healthwatch to pursue?

• For external stakeholders: which type of evidence would be useful for your organisation to receive? Why? How would you envisage using it?

• For Healthwatch staff and board members: would any of these practices of producing evidence help you be more effective in representing local people to your local health and care partners?

After addressing these questions, participants were asked to reflect on the impact on local Healthwatch practices and strategies of evidence production from the COVID-19 pandemic and from recent changes in health and care services commissioning and provision (e.g. ICSs, PCNs).