Testing accelerated experience-based co-design: a qualitative study of using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement

Sampling and setting

The two partner hospital sites were selected partly on the basis of senior clinical managerial commitment to the project, which has been shown to be an important enabling factor for change. 63,64 Our two hospital partners also provided a contrast between a tertiary specialist provider (Royal Brompton and Harefield NHS Foundation Trust) and a general hospital (Royal Berkshire NHS Foundation Trust) to demonstrate whether or not the approach was equally acceptable and practicable in both types of setting. Senior management team members from both organisations were co-investigators (CIs) in the study, and therefore they are not anonymised as overall partners in the research. However, elsewhere in the report we have explicitly anonymised our results. Our purpose was never to compare one site against another, but rather to compare AEBCD against EBCD.

In each of the two participating hospitals, a ‘site captain’ was identified – the senior individual in each organisation who had agreed to participate as a CI, negotiated site access and identified the service improvement facilitators who would take day-to-day responsibility for the project locally, including the identification and recruitment of participants.

Royal Brompton and Harefield’s early involvement in the planning of the study determined the selection of pathways relevant to their specialist heart and lung services, and in discussion with Royal Berkshire we settled on two exemplars: intensive care and lung cancer. Co-applicants Shuldham and Fielden brought not only senior management support but also directly relevant expertise in cardiac and intensive care nursing (Shuldham), and intensive care medicine (Fielden).

These two pathways offered interesting potential insights. One advantage was that lung cancer had already been the subject of a full EBCD project, which provided us with a good comparison with an accelerated version both in terms of process and in terms of costs and impact. Intensive care provided an example of a topic area which has not previously been subject to EBCD. In terms of generalisability, like many other serious health conditions, having lung cancer or requiring critical care impacts on many aspects of a person’s life and necessitates a range of interventions. The experience can be life changing, and in the immediate or longer term can have psychological effects. Cancer is one of the most common pathways in the NHS, accounting for 1.7 million finished consultant episodes (FCEs) in 2009–10, around 10% of all FCEs. 65 Many aspects of the lung cancer pathway are similar to other cancers and other acute conditions where symptom recognition (and delays in consultation), investigations, diagnosis, treatment choices, recovery, discharge, follow-up and medication are all important. In many cases, there will also be similarities with other serious long-term conditions, such as heart failure or chronic obstructive pulmonary disease, in which long-term management and deteriorating health may need to be managed. Lung cancer’s poor prognosis also means that this pathway has relevance for end-of-life care. The two hospitals were involved in different aspects of the care pathway; at Royal Berkshire, diagnostic services, outpatient care, chemotherapy and radiotherapy are provided locally but patients requiring surgery are transferred to a central London specialist hospital for that part of the pathway. Royal Brompton and Harefield, by contrast, take specialist referrals for surgery for lung cancer from many different parts of the country.

Intensive care provided an interesting setting because it is not one single condition, but rather focuses on a care system in a defined location, offering a range of treatments for a variety of conditions in the very acute phase of severe illness. It raises generalisable issues about co-ordination and handover between departments and disciplines, and about improving the care of people who may be unable to communicate at the time or take part in decision-making, and whose utter dependence on staff is a key feature of their experience. It is thus an area in which family carers are particularly closely involved, spending many hours in hospital helping to provide care and assisting in the person’s recovery, as well as taking responsibility for many decisions and interactions with staff, but often feeling helpless and potentially excluded from a specialised, high-tech, automated world. As noted earlier, family carer experiences are a neglected area in quality improvement. As with intensive care, the two hospitals’ intensive care services had different patient profiles, with Royal Brompton and Harefield seeing many planned admissions after complex heart or lung surgery, and Royal Berkshire having a mix of planned and emergency admissions with a range of diagnoses.

Within each pathway, all staff were invited to be part of the intervention, given that staff engagement was a fundamental aim of the intervention. Patients and carers were carefully and purposively selected in order to identify people who could participate effectively in the co-design process. In line with The King’s Fund’s EBCD toolkit,54 the local facilitators were advised to:

• identify patients who had been through different aspects of the service, and who were beyond the critical point of their treatment, so that they could reflect on their experience

• try to include a range of people – determined not only by age, gender and ethnicity but also in terms of the treatment types and services experienced and to make sure that participants’ experiences of the service had been quite recent, so that the aspects of the service that they reported were still current

• try to avoid going to ‘the usual suspects’, and that if they recruited patients involved in existing patient support groups, to explain carefully that in this project they will need to focus on aspects of service delivery that could lead to improvements

• not worry about finding the ‘perfect patient sample’ as the project was deliberately focusing on the views of a relatively small number of people, and so it was not intended to represent every detail about the service.

Particularly in the case of lung cancer, staff felt it was important that people nearing the end of life should have an opportunity to express their views, but at the same time we were mindful of people’s state of physical and emotional health and the possible burden of taking part. Potential participants were thus approached individually through members of the clinical team, especially consultants and nurse specialists, with closest knowledge of local patients/carers, either during their hospital episode or after they had left. A member of the clinical team made initial contact by mentioning the project to likely participants, and this was then followed up with a participant information sheet and invitation to participate, until sufficient numbers for the co-design process were obtained. All patients and carers approached were adults able to give informed consent, and were advised that they could withdraw at any stage. They or their relative had received care in one of the four participating services during the 6-month period of the fieldwork.

The number of staff and patients from each pathway was intended to be sufficient to give a broad range of views as to issues influencing staff well-being and patient experiences. Typical previous EBCD projects have recruited 12–15 patients/carers and 12–15 staff members per pathway. Across four pathways this would have meant 48–60 patients/carers and 48–60 staff. In fact, 159 people took part overall at one or more stages: 96 staff members and 63 patients. Information and consent materials are shown in Appendix 2.

Steps in the process

The design of our accelerated form of EBCD involved seven different stages, adapted from traditional EBCD as described in the Background section, above. These stages are:

1. secondary analysis of narrative interviews from the HERG archive

2. creation of trigger films

3. discovery and engagement work with staff, including staff feedback event

4. focus group workshop with local patients and carers

5. co-design workshop with local staff, patients and carers

6. co-design subgroups of staff, patients and carers

7. final event.

The detail behind each of these steps is set out below. During the first phase of the project (the two intensive care pathways), some of the events described below were filmed, with participants’ consent, in order to provide visual examples of the kind of work involved for dissemination of the method, and training for new facilitators and potential EBCD participants. We have also captured, on film, short interviews with the facilitators and others involved in the two hospitals, again to feed into training for new facilitators.

Shortening the experience-based co-design process

Figure 2 below compares the time frame for traditional EBCD with that for AEBCD. A traditional EBCD cycle typically takes around 12 months’ work in each trust to complete one pathway. In the accelerated version as described above, we set out to halve the cycle to 6 months per pathway (plus 2 months as a one-off set-up time to develop a trigger film around that pathway, which could then be reused in other trusts). Much of the shortening would be achieved by using national rather than local patient interviews, while still ensuring that the process was informed by rigorous patient-centred research. The amount of staff input would also be significantly lower. A traditional EBCD cycle involves a full-time researcher for 6 months and a half-time service improvement facilitator for 6 months (a total of 9 months of staff input). In the accelerated version, there would be a one-off staff commitment of 2 months to develop the trigger film. Within a given hospital, staff involvement would be reduced to a 40% facilitator for 6 months (= 2.4 months). The staff discovery phase was reduced and the time for co-design groups to meet shortened from 4 months to 3. (See also Chapter 3, Results, for a discussion of the impact and feasibility of shortening the process.)

FIGURE 2.

Comparison of EBCD and AEBCD timetables.

Design

The ethnographic evaluation aimed to observe the implementation process in both pathways in each trust and to evaluate the acceptability to patients and staff – and the impact – of this adapted approach to patient-centred quality improvement. The aim was not to evaluate EBCD per se, as there have been a number of previous studies of the approach,36,38,56 but to assess whether or not the accelerated approach provided a workable, affordable and acceptable alternative.

To assess the impact of the accelerated approach, we used a longitudinal comparative case study design and observational methods which are well suited to the study of complex change. 67,68 In effect, there were four ‘cases’: two different pathways in each of two trusts which were compared with EBCD. The evaluation used multiple data sources, including observation, interviews, questionnaires, group interviews with patients, documentary analysis and administrative data on costs. Members of the project team were also encouraged to keep reflective diaries of their experiences and to complete service improvement logs.

In order to place some distance between the intervention and the evaluation, the evaluation team was located in a separate department of King’s College London from CI Robert (and a different institution from PI Locock). While the wider team were involved in recruiting the ethnographer, she worked directly to the CI responsible for the evaluation (Boaz).

Ethnography can contribute to process evaluation by providing rich accounts of activities, projects and programmes. 69 The methodological design for this evaluation incorporated multiple methods and varied lines of inquiry to achieve ‘within research’ and ‘between method’ triangulation. 70 The ethnographer was in post throughout and was therefore able to observe all stages of the project.

At all stages of the evaluation, the ethnographer collected data to address the project’s research questions:

1. Is the accelerated approach acceptable to staff and patients?

2. How does using films of national rather than local narratives affect the level and quality of engagement with service improvement by local NHS staff? Does this have implications for the overall impact of the approach?

3. From local patients’ perspectives, how well do they feel national narratives capture and represent themes important to their own experiences?

4. Does any additional work need to be done to supplement the national narratives at the local level? If so, what form might this take?

5. What improvement activities does the approach stimulate and how do these activities impact on the quality of health care services?

6. What are the costs of this approach compared with traditional EBCD?

7. Can accelerated EBCD be recommended as a rigorous and effective patient-centred service improvement approach which could use common ‘trigger’ films to be rolled out nationally?

Evaluation participants and recruitment

Observations included staff, patients and friends at all four sites. Evaluation interviews were conducted with the facilitators and a sample of participants drawn from the events and the co-design groups. The principle of maximum variation sampling was used to ensure that a spread of different types of participants (staff, patients and friends) had an opportunity to participate. All patients who attended the celebration events in the ICU pathway were invited to take part in a group interview immediately after the event. Arrangements for staff and patient interviews, group interviews and questionnaire distribution were facilitated by the local service improvement facilitator, with support from the clinical lead at each site.

Data collection

Evaluation data collection took place between November 2011 and December 2012. To achieve an enhanced level of immersion required for an ethnography as well as a methodological triangulation, a wide range of formative and summative evaluation methods were employed, described in the following seven sections.

Analysis

Transcripts, documents and e-mails were entered into a computer-assisted qualitative data analysis package (NVivo, QSR International, Warrington, UK). Coding was based on the seven research questions as well as emerging themes. Data were tabulated using framework analysis76 based on the themes linked to research questions: acceleration, service improvement and approaches to design; and constant comparison with EBCD. More specifically, data analysis involved the following stages:

The first stage involved familiarisation with AEBCD and EBCD data – alongside the ethnographic data, the evaluation team revisited reports of previous EBCD evaluations and the AEBCD protocol.

The second stage consisted of detailed coding of the qualitative data using NVivo. The quantitative questionnaire data from both AEBCD pathways and EBCD pathways in breast cancer, lung cancer and an emergency department were entered into Microsoft Excel (Microsoft Corporation, Redmond, WA, USA). Costing data were also collated in a series of tables.

As a third stage, the codes from the qualitative data analysis were indexed and used to develop a comparative framework based on three main themes: acceleration (film, facilitator and time frame), service improvement (performance, patient safety and patient experience) and implementation processes (enablers, barriers and legacy) to compare AEBCD and EBCD cases. The service improvement activities were also categorised based on a framework used by previous EBCD evaluators: grouping design ideas as small-scale changes, process redesign within teams, process redesign within teams, process redesign between services and process redesign between organisations.

As a fourth stage, quantitative data tables for the EBCD and AEBCD pathways were collated and used to generate graphical representations. The team also met with a health economist to support the analysis of the costing data for EBCD and AEBCD. Costs were estimated for each pathway based upon trust reported staff costs and these were combined with central project costs to estimate the average cost of implementing AEBCD. At this stage, the evaluation team met with the PI and CI Robert for a 2-day analysis meeting to consider the data collated and the emerging analysis. The discussion informed the further development of the analysis, mapping of key themes and interpretation of findings.

Patient, family and staff involvement

Patient involvement is a fundamental principle of both EBCD and AEBCD; patients and family carers were therefore an integral part of the intervention at all stages, and their views were central to the evaluation. At the heart of EBCD is also the creation of a coalition between patients and frontline staff as equal partners, and so staff involvement was also important.

The evaluation plan and proposed activities were discussed at the advisory group meetings where patients, support group representatives and staff from the two hospitals commented on evaluation design, methods (including data collection tools) and early findings. One of the patient representatives also checked the plain English summary of this report. The evaluation team found the opportunities to present emerging findings to the group meetings useful in developing their analysis, for example in helping to understand reported patient responses to the trigger films in the two pathways. Patients and staff in the two trusts were regularly informed and consulted about lines of enquiry, methods and tools during fieldwork visits. For example, drafts of the service improvement logs and costing tables were circulated for feedback.

The evaluation had a formative dimension, and so the evaluation team fed back key emerging issues to the wider project advisory group. For example, the ethnographer observed some confusion among participants at an early event when the trigger film was shown. As she had been reading the EBCD evaluations, she immediately saw a solution to this problem based on previous EBCD practice and shared her idea with the project team. The project team responded to the suggestion by producing a script to be read prior to showing the film, so that the purpose was clearer to patient participants [see Chapter 3, Results (4)].

Staff participants

At the end of the staff events in each of the four AEBCD pathways, attendees were asked to complete an end-of-event questionnaire (see Appendix 3). Figure 3 shows the percentage of staff who rated their ‘overall impressions and feelings about the event’ as ‘excellent’, ‘good’, ‘average’ or ‘poor’. For comparison purposes, the figure includes responses to the same question from two historical EBCD projects. No staff members from any of the staff events ranked their impressions as ‘poor’. The majority of staff in both EBCD and AEBCD ranked their overall impressions as ‘good’ or ‘excellent’. A minority of staff ranked their overall impression as ‘average’ in one of the EBCD and two of the AEBCD projects.

FIGURE 3.

Staff responses to ‘What are your overall impressions and feelings about the event today?’ BC, breast cancer; LC, lung cancer.

Members of staff also typically reported that this was a good or excellent way to reflect about their experiences at work in both EBCD and AEBCD projects (Figure 4).

FIGURE 4.

Staff responses to ‘What do you think of this event/process as a way to reflect upon your experiences at work?’ BC, breast cancer; LC, lung cancer.

Anonymous open comments in the end-of-event questionnaires included:

Able to focus on things we do inefficiently.

AEBCD, intensive care

Excellent, helped me to reflect.

AEBCD, intensive care

Was fantastic to get involved with other staff members outside of radiotherapy in areas normally distanced from.

AEBCD, lung cancer

It is very good to know what patients reflect upon and how they view the staff.

AEBCD, lung cancer

These positive reflections were borne out by the observations of the staff events by the AEBCD ethnographer, and in interviews with the facilitators and others involved in the process. The staff-only events were just the start of a process, and the evaluation data suggest that the face-to-face encounters with patients often had a profound effect on staff in making them think differently about their practice and reconnect with their core professional values, resulting in a renewed sense of motivation. A senior manager in one site reported that a member of staff in intensive care had said it was the first time in more than 20 years of practice that he had sat down and talked to patients in this way. A senior lung cancer nurse (unprompted) told a meeting of the project advisory group that it was the most inspiring thing she had done in her professional career.

One of the co-design group leads described her experience of attending the AEBCD events:

It was very interesting. It was a light bulb moment, because you had four different groups, nurses, doctors, patients, and relatives. It was one of the first times I’ve sat down and talked about the same problem and how we all view it, and some of the things other people were concerned about I didn’t think anything of that, and then at the same time some of the things I thought were important, other people didn’t think they were important. It was very, very interesting. It may me realise what a crazy system we are working at the moment. People are doing their own things; they are assuming lots of things.

Interview with co-design group lead, intensive care

Critical aspects of the process identified included creating the space to think and to listen to others (both patients and other staff):

I think the most important things were that staff really appreciated the time to think about the experience. It became apparent that they perhaps didn’t have or make time to reflect on what they do in their daily workings, so I think they actually found it quite cathartic and therapeutic. It actually raised the thinking of experience, and I think the staff really appreciated that their point of view was being listened to because up until that point the political drive had always been patient experience and now all of a sudden we were interested in staff experience.

Facilitator, interview

The opportunity to hear directly from patients and carers had a transforming effect on some staff participants. One participant described herself on a co-design evaluation form as ‘a better nurse because of it.’ Here, a consultant and a nurse describe their personal experiences of AEBCD and how their views of patients as people had changed over the course of the project:

I think [AEBCD] is phenomenal . . . I see people not only in intensive care, but I see them in the outpatient department as well. . . . That patient is about more than just what you see in the form of the numbers or the clinical elements that you come into contact with. There are relationships involved in this whole scenario. There are feelings that are involved in this whole scenario. . . . [AEBCD] allows us to become more curious, rather than judgemental, okay, and I think that’s a very important lesson for most intensive care units. . . . We’re quick to judge, because we’re paid to do that. I have to make a quick decision, otherwise somebody is on the realms of life and death. But when it comes to patients – and I don’t have any idea, as a unit we don’t have an idea of what is beyond what I’m seeing. This informs that process. So I can see that this person is not only a human being, but he is also a father, he is a son, he is a brother, he is a friend, he is a cousin, he’s a plumber or an electrician, he is a sportsman, he has an interest in horse riding, whatever it happens to be. He has a dog, he has a budgie, he has plans, he has expectations, he has regrets, he has feelings. And as much as we possibly can, I would like to think that I just don’t judge the number, but I want to be able to provide a service that benefits all those processes.

Consultant, interview, intensive care

I have already changed the way I think and care for patients even though we haven’t started implementing changes yet. I have a better understanding now of how things are from the patients’ perspective.

Nurse, field note of conversation, intensive care

Similarly, one of the facilitators reflected on how the active involvement and presence of patients had galvanised staff – and now seemed an obviously better way to work.

Has this project been different to other improvement projects you’ve been involved in?

Yes, because the absolute core of it is the humanistic connections. Because of hearing patients’, relatives’ and staff experience it acts as a catalyst and gives you energy to keep going and make the change, and make sure it happens. It’s a real driver to keep going and it seems to be the only thing that makes sense.

The only thing that makes sense?

It is. So many people have echoed that without me saying anything. I have not had to convert people into this methodology now. People just get it and wonder why we have never done it before.

Facilitator, interview, ICU

As one participant observed in discussion with the ethnographer, it is easy for staff to make decisions for the patients without finding out more about the patients, their needs and choices:

So important that priorities are highlighted and worked on by both parties to gain a better understanding of needs. So easy for the health professional to tell the patient what is best for them without actually listening to their needs (and vice versa).

Staff member, lung cancer, field note of conversation

Finally, one of the facilitators described how the project led to a turn-around in attitudes on the part of one consultant who had initially felt quite threatened:

And I think with [consultant], in particular, he was frightened that if he got too near, too close to these patients and relatives, that it would dismantle his coping strategies. And I respect that, absolutely totally respect that. So, I think he felt very much that he was under the microscope, but he always rose to the challenge. So, even though it was disappointing that I had to fight the cause for the methodology, it was so rewarding. So that one instance is my disappointment, but my success if you like, because it changed him completely. And that’s not just me saying that, the two [co-design group facilitators] have just said, and the sisters on the ward say, how different he is, you know, he went the next day and changed the way he did the ward round. So, it wasn’t just lip service with him, he went out and carried out what he said he was going to do.

Facilitator interview, lung cancer

Of course, it is possible that some staff might feel unable to voice major concerns or disagreement with the process without appearing to lack empathy or to place low priority on patient experience. Staff were assured of anonymity in giving their feedback but in a defined service area people may not trust that this will be the case. However, our fieldwork observations suggest genuine enthusiasm rather than socially desirable compliance. There were some comments about the time commitment required, but overall the feedback suggested that staff felt it was a good investment of time compared with some other organisational activities, and one that was likely to improve morale rather than threaten it. This staff feedback was consistent with previous EBCD evaluations. If anything, staff commented that they would have liked more patients involved, especially in the co-design groups – again, however, observations by the evaluators of previous EBCD initiatives noted that the process and engagement of staff and patients (including the number of patients involved) were remarkably similar.

Patient and carer participants

Patients and carers found it most valuable meeting other people who had shared their experiences as part of the co-design process. Across all EBCD and AEBCD projects, a high proportion of patients and carers ranked the experience of meeting other patients and talking about their experiences as ‘excellent’; a small minority in AEBCD ranked the experience as ‘average’, which was not the case for EBCD (Figure 5).

FIGURE 5.

Patient responses to ‘meeting other patients and talking about your experiences’ during the patient event. BC, breast cancer; LC, lung cancer.

The majority of patients across EBCD and AEBCD projects ranked the activity of using ‘The touch points and emotional mapping exercise as a way to reflect on your experiences and identify priorities for improving the service’ as ‘good’. A minority of AEBCD participants reported the experience as ‘average’ (Figure 6). Observational data suggests that AEBCD participants were slightly unsure what to do during this process.

FIGURE 6.

Patient responses to the ‘touch points and emotional mapping exercise as a way of reflecting on your experiences and identify priorities to improve the service’ during the patient event. BC, breast cancer; LC, lung cancer.

Patients are often invited to share their views as part of consultation processes within the NHS. Patients engaged in AEBCD spoke positively about their involvement in what they perceived to be a more active and meaningful approach to patient engagement in quality improvement, in a very similar way to past EBCD projects.

It was great to see you all at the ‘Patient Experience’ event this week, what a wonderful thing it will be if we can contribute to and change what is already an incredible service that the intensive care department already provide – it makes me feel humble to be part of such a cause. Sorry to be gushing, but [facilitator] you truly are a guardian angel. I also feel that this experience should be shared with other hospitals as it seems they could learn a lot.

Patient, intensive care, e-mail correspondence

One patient at a lung cancer joint event contrasted AEBCD with normal consultation in which ‘people say I’ll do this, I’ll do that, and nothing happens’. An intensive care participant said, ‘I feel I was really listened to’ and that it was ‘much better than expected’. Several expressed surprise that they had felt able to contribute as equal partners and that their views were taken seriously.

Group interviews were conducted with patients and carers following events in two of the pathways. Their responses were positive about the AEBCD process and their role within it:

So what did you think of the first event? The first event was when it was only patients and you were shown the film for the first time.

It was thought-provoking.

Well, it converted me because I was very sceptical as to whether I could give any contribution to it.

Group interview, intensive care

A theme within these interviews was a concern that their involvement would lead to little or no change and, as a consequence, the participants spoke positively about the actions arising from AEBCD:

I wondered what, if anything, will be taken on board. To be honest with you, everything has been taken on board, and that in itself was a complete surprise.

Patient interview

One facilitator agreed with this perspective, but felt that in that particular lung cancer pathway it was still a little early to be sure of real change:

I think the success is that the patients really, really engaged with this, they want to help and be involved, and they want to help improve things. And I think we don’t use them as a valuable resource, because they’ve been through it, they’ve been there, done it, and they know exactly what’s wrong, or what’s good. So I think the positive out of this is that we have now, kind of, a nice group of really engaged individuals, who can see there’s a benefit for them being engaged. And that, I think, is a big difference, a big improvement, and a massive positive for our service, that we’ve got such a group of engaging individuals. On the negative side of things, I suppose it’s probably a bit too early to see yet, because not all of the individual projects have yet, I suppose, finalised and come to fruition, so I think it’s probably a little bit too early.

Facilitator interview

Patients who presented at celebration events expressed strong support for the process and what had been achieved. One carer at an ICU celebration event made the following speech reflecting on his experience of engagement in AEBCD:

Thank you for the chance to take part in this study. We hope our contribution has been valuable – whether it has or not, it has certainly been very valuable to us. In both [co-design] groups we have participated in we have heard things that have helped us to come to terms with what happened. And it has been wonderful to know you all – staff and patients alike. I have learnt many things and even some new words – ‘wardable’ I think is my favourite . . . I am aware there is very little in a practical sense that either my wife or I can do from now on. But as this is the year of the Olympics it occurred to me that two of my favourite events – the 100 and 400 metre relay races – provide a good metaphor for what we have been discussing over the last few months. Even the same word is used – Transition – and while I wouldn’t want to describe [my wife] or any of the patients as a baton, there are some similarities.

The patient – as is the baton – is held securely until it is time to pass it on to other hands. It doesn’t matter how well the lap is run – or what progress is made – if when the baton is passed on to the next runner it is fumbled or even dropped. Then any good work is lost.

It happens three times in a relay race – and may only happen once in the hospital – but a practised and smooth transition can only speed up the process of healing and recovery, and be beneficial to the patient, the staff and in the end to the relative who hopefully will be last in this ‘real life’ relay race. And the baton and the patient will be passed securely into the waiting hands of their loved ones.

Carer, speech

The ethnographer also noted the following:

There was a comment from a patient within the event who said that everything that had been discussed had been taken forward into improvements . . . ‘our views were not dismissed, they were looked at and things changed.’ ‘Thank you for looking at the little things.’

Excerpt from ethnographer’s field notes at celebration event

Evaluation evidence also suggests that patients drew some direct personal benefits from taking part, as the comment above from the carer about coming to terms with his experience suggests.

I drew a picture of a tracheostomy on a patient on a ventilator, and I showed that to a patient to explain why they can’t talk while they are on a ventilator. So he’s framed it and he’s asked me to sign it and date it, and this picture took about ten seconds to draw.

Consultant interview

A patient today said it [AEBCD] had been ‘therapeutic’ for her as she realised that she was not the only one who had experienced hallucinations. It confirms you sometimes have to be bold and go with your instincts as to what is a good thing to do.

Excerpt from senior manager’s reflective diary

One question that has emerged from our study but which our study design was not intended to address is whether or not AEBCD brings less personal therapeutic benefit to individual patients involved. Although individual patients reported finding AEBCD a beneficial process, one of the former EBCD evaluators, who was in a position to compare the two approaches directly, suggested this as one possible ‘cost’ of using AEBCD:

I do think there is a therapeutic element to storytelling which AEBCD misses.

EBCD evaluator, observation notes from AEBCD celebration event

Thus, anecdotal evidence – from those who have previously led or facilitated EBCD implementations – would suggest that, at the level of the individual participating patient/carer, the impact of AEBCD is less as participants did not have the opportunity to tell their own stories, listen and potentially watch them back, hear stories of other patients who had been cared for in the same service as themselves, and then reflect together with them on their own shared experiences. However, the evaluation did not set out to explore the question of individual therapeutic benefit, and so confirming this assertion would require further research and a different study design.

One of the facilitators also identified a benefit in terms of mutual understanding between staff and patients, and described

. . . [a] paradigm shift in the patients and relatives. They gained an insight into the ‘real world’ of the NHS and healthcare professionals restraints and constraints and became ‘caring and protective’ of them – which was very evident in both pathways. They reported that it wasn’t just about them being listened to but that change was made possible because of their involvement and the tenacity and passion of staff.

E-mail observation, facilitator

Role of facilitation and impact on facilitators

The role of skilled facilitation is known to be a major influence on implementation;77 in this accelerated form of EBCD the facilitators took on some additional responsibility, which in traditional EBCD would usually have been led by an external researcher. They also exercised more independent leadership of implementation. In most previous evaluations, an external researcher has worked in the hospital setting alongside the facilitator, providing continued advice and support around the process as well as gathering and analysing patient and staff discovery interviews. However, this is an expensive way to achieve change and is one of the barriers to wider uptake,36 and so we designed the accelerated model on the basis of a more sustainable ‘real world’ approach of building internal capacity to facilitate improvement initiatives. Thus, the facilitators were trained at the beginning by CI Robert, and were able to contact him for advice and support whenever they wanted, but did not have continuing on-site support. They also used the EBCD ‘toolkit’ on The King’s Fund’s website to supplement their knowledge.

Each hospital organisation received funding for a 40% post for 6 months for a local facilitator for each pathway. The hospital partners chose their own approach to local facilitation. One appointed a single person to facilitate both pathways, while the other opted to appoint two different people. All three took on facilitation part-time alongside other continuing responsibilities; in practice, the extent to which they were able to back-fill their time to free up space for facilitation varied. All EBCD initiatives make significant demands on facilitators, in terms of both time and organisation, but also in terms of direct personal exposure to potentially distressing or challenging patient experiences as well as engaging staff colleagues who may feel demoralised, threatened or indifferent. However, a key difference in AEBCD was in the handling of the staff discovery component. In traditional EBCD, staff discovery takes place alongside the patient discovery interviews, over the course of 6 months. While the patient interviews, analysis and film editing are the major parts of the workload during this time, the extended time frame allows staff discovery to take place on a more relaxed timetable and allows momentum around staff engagement to build over several months. In AEBCD, because the patient discovery phase was removed, staff discovery and engagement were confined to a short time frame, which created substantial pressure on facilitators early on in the projects, at a time when they were also recruiting patients for the workshops, organising venues and invitations, and on a learning curve about how to do EBCD. As two of the facilitators themselves noted in successive reflective diaries:

We are both finding things a little difficult because we have been given very little time to do this, i.e. only 3/4 weeks.

Facilitator reflective diary entry

We had our training on 21st October and in that month you were trying to assimilate what had been said, or what it was all about, look at the King’s Fund website, recruit your patients, do your interviews, process the whole lot, organise the first event, and hold the first event, and that was one month. I think if we just stretch it a little bit longer, six weeks, or at least have your training day earlier so you’ve got – and a few key pointers – so you’ve got time to digest what you’re being told and what is being asked of you, and ask questions and things, rather than training and then straight into it.

Facilitator reflective diary entry

I have had to be very organised, forward thinking and think creatively with this project. I have felt quite anxious on occasion, particularly about the patient recruitment, and this led me to feel a little negatively about the project as a whole. Once I had finished the interviews and had recruited the patients I felt more positive about the project. I have received very good support from other people.

Facilitator reflective diary entry

The actual workload and intensity was huge and it required far more hours in a week than were scheduled for – but I have the flexibility to manage my own workload and I am committed to this process (therefore expected to work above and beyond the required hours). I worked hard to plan and prepare for the patient and carer event and it did pay off.

Facilitator reflective diary entry

We observed that the workload was ‘front-loaded’, which had not been anticipated in the way the posts were set up. Even in the case where the same facilitator moved from one pathway to the next, the fact that they were dealing with an unfamiliar and disparate group of staff in the second pathway created some of the same challenges second time around. The facilitators managed this pressure in various ways with the support of senior leaders in their organisations, including working extra hours at the beginning of the intervention, and drawing on other people in the organisation to help, but with hindsight more time for staff engagement would have been beneficial. In one case, the hospital had a nursing researcher who was interested in patient-centred improvement and provided additional support. The facilitators demonstrated that it was possible to work to this shortened timetable through sheer hard work and commitment, but this came at a personal and organisational cost.

This is a demanding project for the staff. [The facilitator] did extremely well at the staff event and the staff participated fully. The manager of the unit and an anaesthetist (not the consultant I had involved) were very involved. The atmosphere over lunch suggested the patient event went well too. The estimate of staff resources to facilitate this project were too conservative. [The facilitator] has effectively worked full time on this over the past few weeks and has had support from [internal trust research staff]. At the meetings [the facilitator] was assisted by [internal trust research staff] and the PPI lead and a staff nurse from the ICU. I should have made sure I knew more about the demands on the Trust staff and been even stronger about staff resources at the funding stage. That said I am really pleased we are doing this project and see that we should get benefits for patients.

Excerpt from senior manager’s reflective diary

A further unanticipated issue was how to record and analyse the content of staff discovery interviews. In past EBCD projects when this has been the responsibility of the external researcher, that person has recorded, transcribed and coded the staff interviews for a thematic analysis, to present to the staff feedback workshop. However, the primary purpose of staff discovery interviews is engagement and broad identification of important areas of concern, rather than in-depth research into staff perspectives. Internal staff facilitators are not trained to do qualitative data coding and thematic analysis and it was questionable whether or not this would be good use of their time. In consultation with the facilitators they were advised to take detailed notes during staff interviews rather than recording and transcribing, and to use the notes in a pragmatic manner to produce anonymised feedback which could be confirmed or challenged at the staff workshop.

In the event, both of the ICU facilitators chose to record the staff interviews so that they could listen back to the recordings if necessary when they compiled the staff feedback (although they did not transcribe them):

On the audio recording point, I understand that [co-investigator] suggested at the training morning at [hospital] that it would be better for facilitator 1 and facilitator 2 not to record the interviews (precisely because it makes the analysis so much more time-consuming, especially if you’ve never done it before) and just to use notes taken at the time, reflecting that this was meant to be an accelerated process, rather than the kind of intensive discovery phase normally used in EBCD. But facilitator 1 and 2 both felt they wanted to have recordings. This is certainly something we should note for the evaluation – perhaps the answer would be to rely on notes for the analysis but to know that the recording is there if they do decide they need to go back to it.

Co-investigator, e-mail correspondence

The facilitators stressed that while the burden of conducting a new quality improvement initiative was significant, they could also identify benefits which they have derived from their involvement. All reported that they were taking back to their pre-existing clinical or managerial roles a new insight into the gains for staff and patients of working together on quality improvement, and that they planned to continue using EBCD techniques in future. The hospital organisations have a legacy of new skills and experience, and two of the facilitators have already moved on to lead further EBCD projects within their organisations. The facilitators have been and will continue to be active in dissemination activities around the project, including co-authoring and lead-authoring papers for different audiences, submitting abstracts to and presenting at conferences, and cascading skills to colleagues. Importantly, they have contributed to an updated version of The King’s Fund’s EBCD toolkit to share their experiences to provide practical information and support to future facilitators.

Approaches to implementation in different pathways; managing and facilitating the co-design groups

As with traditional EBCD (and, indeed, any quality improvement initiative), implementation varied in style and outcome in the four different cases. As noted above, the hospitals took different approaches to the appointment of facilitators. One appointed a single person to facilitate both pathways. This individual had a clinical background in one of the pathways but not the other. The other organisation opted to appoint a different person from within each of the pathways: one from a clinical background and one from a service management role. Consistent with other evidence,77 experience in our study suggested that the appointment of skilled, experienced and trusted individuals to these roles made a vital difference; that someone who has built a reputation for EBCD in their own service area can successfully transfer these skills to a new area; and that quite different facilitation styles can work equally well (see also Identifying local facilitators, below).

When it came to the co-design phase of the project, one of the facilitators felt that The King’s Fund’s EBCD toolkit did not provide sufficient guidance and support on how to manage the co-design groups and the quality improvement process:

The King’s Fund EBCD website has been invaluable to this point but I found a lack of information in regard to how to manage this change process. As a result momentum was temporarily slowed down as I spent time considering the best process.

Facilitator, reflective diary, ICU

Working with a colleague, the facilitator identified an approach called Quality Circles (developed by the National Society of Quality through Teamwork) which had been used locally to bring about embedded and sustained change. It did take time to identify an approach, but the facilitator felt that this was valuable, as the Quality Circles method provided a detailed and stepped approach ensuring that the project stayed on track (with constant referencing to the process and the problem identified). 78 The other facilitators did not adopt a formal tool such as Quality Circles.

One facilitator attended all of the co-design groups but chose to involve other members of staff (and, in one instance, a patient) to help lead them. The aim was to promote and support individual learning about the research methodology as well as project management. The facilitator reported that this meant that spread and sustainability occurred and also that those project leads were enabled to build relationships with the patients, relatives and staff. It was felt that this increased their own emotional connection, which in turn increased their accountability and responsibility to drive forward and complete the co-design work, knowing that they would be facing those patients/relatives and staff at the next meeting and would be held to account – as the facilitator said, ‘there is nothing more powerful’. The project leads were briefed regarding the process, provided with literature and had open access to the facilitator and the support of the ICU nurse consultant, who became an influential ‘voice’ in the trust promoting the project.

The other facilitators chose to lead the co-design groups themselves. They retained control of the process, had a detailed knowledge of the proposals discussed and took the lead in putting the plans into action. In one case, the groups met twice, once following the staff and patient event to plan what needed to be done and again before the celebration event (3 months later) to check that the actions suggested by the group had been followed up. This was supplemented in between by continued virtual contact, for example communicating by e-mail about sourcing particular items such as clocks or electric toothbrushes, and patients going off to do their own research. The other facilitator held co-design group meetings immediately after the staff and patient event and took away a plan to work with colleagues to address the emerging issues, but had not made firm plans to bring the co-design group back together at the end of our fieldwork period. It was unclear how far this was a decision driven by lack of time; organisational practicalities (including a period of sick leave and the impact of the summer holiday period); or the potential burden on participants, many of whom were very ill and lived some distance from the hospital. In the same pathway, the trigger film was shown only once, at the patient event; plans to show it at the joint staff and patient event had to be abandoned because of technical problems. This meant that staff were not directly exposed to the patient narratives on film, though they had direct interaction with local patients.

These kinds of process decisions, adaptations and practical challenges are common across all attempts to make patient-centred quality improvement work, and are not unique to AEBCD.

Improvement activities

The four pathways generated a large volume of service improvement activities. The activities were captured in service improvement logs (completed by the facilitators), observations of co-design events, interviews with the facilitators and with other group members, minutes of co-design group meetings and the celebration events held for participants.

Fifteen different co-design working groups were established. The topics are summarised in Table 1 (individual hospitals are anonymised).

The improvement activities are summarised in Table 2. There are a number of different approaches to categorizing improvement activities. For example, Glouberman and Zimmerman79 have used the framework of simple, complicated and complex problems to categorise improvements in a Dutch implementation of EBCD. Their examples were following a recipe (simple); sending a rocket to the moon (complicated); and raising a child (complex). For this project, we adapted a framework used in a previous EBCD study by Adams et al. 39 Adams et al. suggest the following categories for improvement activities: ‘quick fix’ involving little or no change in everyday working practices (e.g. revisions of written patient information); process redesign within a service (e.g. new in-service procedures for patient consent); process and structural redesign spanning different services (e.g. improving access to pre- and post-operative physiotherapy care); process and structural redesign within the wider organisation [e.g. addressing delays in obtaining positron emission tomography (PET) scan results]. Here, we organise the activities under the following headings: small-scale changes; process redesign at the team level; and between services and between organisations.

Forty-eight improvement activities were reported to be under way by the service improvement facilitators and are recorded in Table 2. It should be noted, however, that the number of activities is only a crude measure of the degree of change and the impact on quality; what looks like a tiny change can be of great significance to individuals, but, equally, focusing on one difficult process redesign rather than making many small changes can be important. As one facilitator noted:

Research can be done in the real world, if you are committed, enthusiastic, believe in it. The difference with this research is that it is relational and not a clinical trial, i.e. people matter and numbers don’t. Sometimes you cannot count what counts.

Facilitator, reflective diary, ICU

Similarly, the ethnographer observed:

The biggest and most sustainable improvement that took place, though, was the change in the attitude and behaviour of staff towards patients that cannot feature in an ‘improvement log’.

Ethnographer, observational notes

As in any quality improvement initiative, not all proposed changes will be acted upon, and at the time of writing some of the improvement activities were still being pursued, or had been partially implemented. For example, changing practice to encourage staff to brush intensive care patients’ teeth more regularly had taken place but the sourcing of new electric toothbrushes (which had been led by an enthusiastic patient) was on hold. In some cases, improvements may take place initially but then do not remain in place; it is too early for us to be able to identify examples of this kind. Again, however, this is common across AEBCD and EBCD; Adams et al.’s forthcoming study39 of the spread and sustainability of EBCD initiatives will provide evidence of the longer-term fate of EBCD improvement activities.

Small-scale change

Thank you for looking at the little things.

Patient, observation field notes at celebration event, ICU

With mine [co-design group] it will be, ‘Make sure the mask fits. Be aware, make sure the mask fits’. All of it is very simple. The clocks, everything was simple. Nothing was rocket science here that people were asking.

Patient, patient and carer group interview, intensive care

We preferred the term ‘small-scale change’ to ‘quick fix’, as observation suggested that apparently small changes were not necessarily quick and could be quite complicated to implement – in some cases implementation extended beyond the immediate time scale of the project or was ongoing at the time fieldwork ended. They could also be changes that were highly valued by patients.

Under the theme of enhancing basic care, one site identified the following small-scale changes in intensive care: producing a sign to pin to bed curtains when personal care was under way to enhance privacy and dignity; promoting the correct application of breathing masks (supported by a written guide and teaching on team days); and sourcing ‘day and date’ clocks to aid patient orientation on the ward (given that patients may have long periods of being unconscious). The group planned to include information about hallucinations in the rehabilitation and therapies booklet produced for patients. Under a second theme of reducing noise and sleep deprivation, they identified the need for eye masks, making sure the ward entry buzzer was answered promptly and buying televisions that patients could watch using headphones. Also under this theme, the group set out to create posters to promote quiet on the ICU and signs to indicate that a patient was tired and needed to sleep. Finally, they aimed to source a telephone with a less intrusive ring tone and to purchase quieter bins. While some of the activities planned by this group were still ‘works in progress’ by the time of the celebration event in April, the group reported back that the porters were no longer emptying bins during rest periods. As part of the third theme on communications, a relatives’ information booklet was to be updated with key contact numbers, and doctors were to be asked to wear name badges. In the co-design group, a patient supported the idea of name badges, but suggested that they should be in a ‘nice, large font’ so that patients would be able to read them from their beds.

The group on doctor–patient communication on ward rounds set out to update the orientation and ‘house rules’ booklet and to update an information booklet for patients and families, adding explanations of key doctors’ roles in ICU. In one of the lung cancer pathways, acquiring comfortable pillows and the transfer of pillows, dentures and frames from theatre to the recovery ward were identified as potential small-scale changes, but ones which could make a profound difference to people’s experiences; being without one’s own dentures has the potential to undermine an individual’s sense of self and dignity.

Process redesign at the team level

A group looking at enhancing basic care group in ICU had a number of improvement activities at the process redesign within the team level. These were promoting the involvement of families in personal care and promoting the washing of patients’ hair more regularly (both via the team electronic newsletter). New washbasins and toothbrushes were to be trialled and nurses were to be encouraged to brush patients’ teeth more regularly (again via the team newsletter). In the noise and sleep deprivation group, the group set out to trial washing patients in the evening rather than first thing in the morning to prevent the exclusion of relatives and allow patients to sleep. A feedback blog was to be created to access staff opinions about the changes to working practices. In the communications group the following team level resigns were identified: trialling set times for family meetings, sending out critical care news to all multidisciplinary teams, training for nurses in communication skills, reminding nurses to offer support to junior staff and informing nurses of support mechanisms via the critical care news. The group working on communication between doctors and patients on ward rounds identified timing of ward rounds as an issue and suggested reviewing the timings to ensure consistency. Consultant surgeons were to be informed that patients would like to see them post-operatively on the intensive therapy unit. Finally, mini ‘Schwartz rounds’ were proposed to discuss emotional and social issues relating to patient care. At the celebration event in April, the co-design group announced that the first round was scheduled for 1 May.

The hallucinations group planned to develop information for staff and patients on hallucinations, including staff training, a patient leaflet and a DVD. A half-hour training session about hallucinations was planned, covering the theory behind hallucinations, patient experiences and how best to talk to patients about them. The ventilation group also developed a DVD about the experience of being voiceless while ventilated. Patients and staff were interviewed as part of the process of developing and applying the DVD.

The ventilation group also introduced an iPad application (Apple Inc., Cupertino, CA, USA) to help ventilated patients communicate. However, one of the consultants commented on how difficult it was to make this change:

We’ve got an iPad and we’ve got a program on there, that’s been a bit more difficult to get into place than I thought it would be. Yes I suppose the main thing is the time it’s taken to get things in place. That would be the main disappointment, but you could argue that I’m just being impatient.

Interview, consultant, ICU

The individualised care group set out to develop guidelines for a personalised care ‘person’ tab on the ICU system for staff to log the patients’ personal information. The group found that most staff knew the details of a patient’s condition and treatment, but very little about the patient as a person (in terms of hobbies, interests, job, etc.). Group members observed that experience and seniority seemed to have very little bearing on staff knowledge; it appeared to the group that the personality of staff members was the biggest factor affecting their ability to get to know their patient. In her reflective diary, the co-design group lead commented on the progress they were making to draw attention to the patients as people:

We decided to use a tool that is currently in use called a ‘spirituality assessment’. It is not being utilised very well at present and we plan to customise the tool and re-educate staff to promote its use and empower staff that are not gifted with the type of personality that facilitates getting to know their patients on a personal level.

Co-design group leader, reflective diary, ICU

Team-level improvements in lung cancer included identifying and modifying a private room for supporting patients after receiving their diagnosis as part of the privacy theme. The identification of a private room proved more challenging than anticipated. However, the facilitator observed that the loss of the room did not derail the project, and another room was found. She highlights the reasons why, focusing in particular on the contribution of an unexpected local ‘champion’:

The Out of Clinic room, it was the change in attitude, about when patients are given their diagnosis. Whereas, perhaps, it had become something that was an everyday occurrence, I think that the attitude, and there was a cultural change, and in her, she became a champion for making sure that patients are treated in the right way after they’ve been given their diagnosis. So she’s now given up half her office, which will be a room for people to go in. And the biggest thing with that is . . .

Was this when I took the photos of the room?

Yes.

And has this room been revamped now?

No.

No?

No, because then there were some other issues relating to, I don’t know what it was, but now another plan – so whereas she could have said, ‘oh it can’t be done,’ she went on to get another plan, so actually there’s another room that’s now going to be the area. But the way I would describe it is that, the whole project ignites fires in people who are not necessarily – you wouldn’t normally expect them to take the initiative, but it ignites the desire to, kind of, change, it changes the way people think. And so you end up with unlikely champions, you know, and that’s one of the really good things about it, is seeing people who you wouldn’t expect to, and that’s why it’s so powerful, it’s seeing the impact it has on people. Yeah, unexpected champions, I suppose, is the way we would put it.

Co-design group co-facilitator, Interview, lung cancer

A lung cancer co-design group addressing the theme ‘support’ aimed to set up a patient support group and promoted the role of the clinical nurse specialist in supporting patients. Following discussion, the co-design group felt that a ‘social’ group was the best approach to supporting patients and suggested meeting at a pub every couple of months. There was an agreement that this social group would be run by the patients and relatives. The co-design group decided that the way forward would be to have a one-off meeting in the evening at the trust to work out the details. Ideas for a name were discussed, and ‘Windbags’ was proposed. The group thought the name captured the focus on lungs and on providing a forum to chat. They agreed that everyone would be welcome, with the intention to break the isolation that patients sometimes feel. The facilitator noted that the set-up meeting was scheduled for October. However, the meeting did not happen. The co-design group facilitator commented that he was waiting for the patients to organise the group and would chase it up. The group had not yet met by the end of January 2013 (when the project team was writing this report).

Finally, a group on diagnosis giving focused on better planning for diagnosis giving from the medical team. The co-design group lead spoke very positively about the work of the group and the experience of working in a co-design group. She also provided examples of changes in diagnosis giving practice on the ward, while emphasising the time required for sustained changes in practice:

So for once, it is something that is just good to do, and feels good to do, rather than something that people are being told to do because.

I see what you mean, yes.

So it’s not to tick a box, it’s not because we have no money, it’s because, actually, all the people there wanted to make things better. So then seeing the changes, so seeing things, you know, for all the groups, they were different things. For the diagnosis group, actually, seeing somebody’s practice change is really exciting, you know, so seeing [doctor] influencing his colleagues. So we still haven’t solved the problems, and there is still work to be done, but the changes that you see in people . . . I suppose observing, reading in the notes that somebody had planned giving the news of diagnosis to a patient, whereas they wouldn’t have planned it before, they would have just gone in and told the patient, ‘These are the results,’ whereas actually, just reading that a junior doctor, influenced by the person involved in the project then. So it was, actually, seeing something real and tangible that had already impacted on a patient. At the same time, a disappointment is that, I suppose it’s not a quick fix, that project, the diagnosis project in particular, is something that is going to take a lot longer, and my concern is that after – it’s not my concern, it will be a challenge to maintain the impetus of keeping with the project, because a lot of the others, they’ve had quite clear outcomes. So the information booklet, that job is done, the support, you know, we’re nearly at the point where the letters will be going out. The diagnosis issue, because it’s an educational thing, it’s not going to be, [clicks fingers] right, that’s it we’ve sorted it all out, so it will need to be an ongoing project. So that’s how I see is that, I hope that we will be able to maintain that, and only time will tell.

Co-design group facilitator, interview, lung cancer

Process redesign between services and organisations

A much smaller number of improvement activities involved process redesign between services and organisations. The enhancing basic care theme in ICU looked at encouraging wards to send patients’ wash-bags to ICU. To promote this change, an e-mail was sent to all sisters and managers. The reducing noise and sleep deprivation theme set out to change the waste collection timings to have waste collected by porters from the ICU outside the patients’ rest period. In the other ICU pathway, the discharge summary was to be redesigned with professionals from all teams involved with discharge and patients.

So the biggest thing for this for me is that the three groups, the physiotherapists, the nurses and the doctors, all looked at the same thing, and so we just fill out one form as before it was, ‘This is your form, this is the nurses’ form, this is the doctors’ form.’ So it made it very much a patient focused document, which is very, very good and we need to do that a lot more so we will add the notes.

Consultant, interview, ICU

Between March and July 2012, the co-design group facilitator embarked on a consultation process with staff members in other wards to which ICU patients are discharged. Outside co-design group meetings, the group kept in touch via regular e-mail communication in which the contents and structure of a new discharge summary were discussed. Members of the co-design group noted how one of the consultant anaesthetists, in particular, had become much more patient-centred as a result of participating in the group. This change was also observed by the ethnographer in an e-mail from the consultant to other co-design group members in response to suggestions of clinically centred discharge-form categories:

Sorry to be a pain but I think this is hugely important! I don’t feel the final form should have sections divided by health care professional – it will mean that the docs don’t read the nurse bits, physios ignore docs bit, etc. I FEEL VERY STRONGLY THAT IT HAS TO BE A PATIENT CENTRED DISCHARGE DOCUMENT.

Consultant, e-mail correspondence, ICU

Only one change concerned service change between organisations: One of the lung cancer pathways sought to redesign an information booklet for patients being referred for surgery at another hospital. This involved accessing information for the booklet from the other hospital.

The information group was co-led by a patient. The ethnographer recorded in her notes that the patient took this role very seriously:

I notice that the patient who is a co-lead has a folder with his notes from each meeting, handouts and evaluation forms.

Ethnographer’s fieldwork notes, co-design group meeting, lung cancer

The group identified an existing leaflet but noted that it applied to all lung surgery and did not address particular issues for patients travelling to the hospital in question for surgery (e.g. where to park). The patient co-lead wrote directly to the consultant surgeon at the other hospital updating him on the progress of the information co-design group and explaining patients’ information needs when changing hospital.

The service improvement facilitator noted in an e-mail to the ethnographer that this letter had prompted the consultant to send letters to patients following their first consultation. This was something that local staff had been hoping to implement with the other hospital for some time, and so they saw this as a very important achievement.

The group co-lead commented on the impact of having a patient so actively involved in the group:

[The patient] was really happy to co-lead that [the co-design group], yes, I think that made such a difference. I think his feelings and experiences of having the surgery; I think that kind of gave us that drive really. All of them knew that there had to be a change, so it really inspired . . . I think it inspired the staff who were in the group to try and improve the information, because all of the patients . . . I think that was the powerful thing, they were all saying actually, ‘This needs to be changed’. It’s not really difficult to produce this information, but actually when the information is available to other patients, it will make a difference to them.

Co-design group leader, interview, lung cancer

Spread within the organisation

In both hospitals, senior managers report that experience-based co-design principles have been adopted in other areas and engagement in the project has given staff involved confidence in working with patients in a collaborative way. One hospital CI notes that:

AEBCD (and EBCD) provide a framework for staff to use which enables patients and staff to have a voice and make a commitment to improving services in the light of the experiences patients have of the service.

Co-investigator

In one trust, plans were in place to use the experience within the lung cancer pathway to implement an accelerated approach with another part of the lung cancer service. The trust also planned to train other staff in the AEBCD approach with a view to using it more widely in future service development activities. Two other projects were reported at this site, employing EBCD methodology. The first, a 1-year project, focused on the transfer process from intensive care to the high dependency unit. The team was looking at solving any problems for patients in the whole process of transfer. When the member of staff leading this project was interviewed at the end of AEBCD, the project was 2 weeks away from a co-design event. The second was a project with a patient experience evaluation which explored the experiences of patients referred to pulmonary rehabilitation for chronic obstructive pulmonary disease, where rehabilitation has been shown to be effective in increasing the quality of life of patients.

One of the hospitals is rolling out an EBCD approach to patient experience in the emergency department. This is supported by the College of Emergency Medicine, and has active commitment from a senior accident and emergency medicine consultant, who was inspired by involvement in the original intensive care project and by hearing the PI speak about AEBCD at a local emergency medicine conference. New local interviews are being scheduled, with consent for these to be used on Healthtalkonline in future. The same hospital is also a collaborator on a research grant application with members of the research team to explore the use of EBCD in the management of early labour (not yet funded).

Identifying local facilitators

As in any quality improvement initiative, we have observed the central importance of the facilitator role. The hospital organisations chose their own approach to local facilitation. One appointed a single person to facilitate both pathways, who had a clinical background in one of the pathways but not the other. The other organisation opted to appoint two different people from within each of the pathways, one from a clinical background and one from a service management role. It was evident from our study that the appointment of skilled, experienced and trusted individuals to these roles made a vital difference; that someone who has built a reputation for EBCD in their own service area can successfully transfer these skills to a new area; and that quite different facilitation styles can work equally well.

Other hospitals might choose to use a central quality improvement team. There are advantages to both approaches; building a core team with facilitation skills reduces the need for repeated training and avoids the ‘learning curve’ problem of new facilitators. In the accelerated model of EBCD, this may be particularly important; there is no lengthy discovery phase in which to learn, plan and build up to the co-design phase. Hospitals which already fund a quality improvement team may find this a cost-effective route to adopting AEBCD, requiring no further expenditure but rather a change in existing routine work. A central facilitation team may also bring a fresh external perspective to staff discovery interviews, and become practised at identifying key themes. Their lack of identification with a particular service may make it easier for patients and carers to voice criticisms. On the other hand, facilitators who come from within the relevant service already have first-hand knowledge of local issues to help set the national trigger film in context, and have ready links to local staff and patients, which will enable swift co-ordination of co-design meetings. Their understanding of the area may enable them to spot and draw out relevant patient concerns and priorities which a central team might miss. They may be more trusted by their colleagues to understand staff feedback, especially if they come from a clinical background themselves. Using co-design within their own area may sensitise facilitators more generally to the patient’s experience of their service, which may lead to a more lasting impact. There is no right answer to this question; each hospital will need to assess its own resources and preferred approach, and this may differ from one pathway or service area to the next.

There are clear advantages in keeping momentum going during the co-design phase, in terms of enabling both patients and staff to see clear progress, maintaining enthusiasm and commitment, and minimising the burden of time commitment. The degree of acceleration we applied to the staff discovery and engagement phase, however, may not be essential. It is achievable, and the speed did not seem to affect staff engagement, but there is no reason why hospitals could not set themselves a more relaxed timetable for this (and indeed for the implementation phase) to reduce the pressure on facilitators, resources permitting.

Training and support for facilitators

The facilitators in our study were given training by CI Robert, one of the originators of the EBCD approach in health care. They were also encouraged to use The King’s Fund’s online EBCD toolkit. Despite this, they reported that when they began work on the first pathway (intensive care), they would have liked more opportunities to learn directly from the experience of other facilitators who had already used the approach, particularly around practical methods of supporting the co-design groups. The two facilitators working on intensive care shared experiential learning with each other and gave each other mutual support and encouragement.

Three implications for practice arise from this. Firstly, we have expanded The King’s Fund’s toolkit to include reflections from the facilitators in this study and other participants, including patients, so that future facilitators can benefit from their learning, feel more prepared for what to expect and be reassured that the process works, and that genuine staff and patient engagement is possible.

Secondly, we suggest that there would be benefits in providing more opportunities for EBCD and AEBCD facilitators to network, to cascade learning and provide a continuing source of information and support.

Thirdly, we identify a need for more regularly available face-to-face training alongside the EBCD toolkit. While the toolkit undoubtedly provides a valuable reference – in effect an online textbook – we know that deep learning is more likely to happen where there is a chance to interact and relate learning to one’s own context. New facilitators benefit from an opportunity to ask questions and share their doubts and fears. There is an opportunity for hospitals and other organisations which are already repositories of experience on EBCD and AEBCD to develop and run more training courses for other hospitals. This could be self-financing if a small course fee is charged.

Generating new trigger films

For this study, we conducted secondary analysis and produced two trigger films covering three of the interview collections in the HERG archive (lung cancer; patients’ experiences of intensive care; and relatives’ experiences of intensive care). At the time of writing, the archive contains collections on over 80 different conditions and topics, and 8–10 collections are added per year. This is an enormous body of work from which to create new trigger films. The financial model on which the research has been based has always included free dissemination of findings to patients, public and professionals through the Healthtalkonline website, but this analysis has been designed first and foremost on the basis of what may help individuals learning to live with their condition and seeking emotional support. Individuals may have a better experience of illness as a result, and professionals may gain insights which improve their personal practice and, thus, patient experience, but the purpose has not thus far been explicitly to analyse and improve the organisation of health care.

There are several options for how we might handle this, both looking back at previous collections and on a rolling basis as new studies are added. These various potential solutions may require further research (see Implications for research, below).

• With new collections, cost some additional researcher and technical time into each HERG grant proposal to incorporate an additional EBCD-focused analysis and produce a trigger film to place on Healthtalkonline at the same time as doing the main analysis.

• For previous collections, seek funding for a service improvement fellowship to work back through the archive to produce a series of trigger films.

• For both new and existing collections, experiment with producing trigger films based on what is already on Healthtalkonline rather than conducting a full secondary analysis.

• Use a forthcoming ‘scrapbook’ feature on the Healthtalkonline website to enable anyone using the site to create their own useful collections of clips for specific purposes and share these with others. EBCD scrapbooks created by NHS staff working on quality improvement could be specifically encouraged and shared.

• Use online feedback on existing films to help identify where they may need updating in the light of new treatment developments.

• Encourage local patients and carers in future EBCD projects to search the website for clips that they feel capture issues important to them and which they would like to show to local staff – this would be an interesting extension of co-design principles into a ‘co-discovery’ approach, thereby empowering patients to create their own trigger films.

• Work with future EBCD projects collecting new local patient discovery interviews to share these online (through Healthtalkonline or The King’s Fund’s EBCD toolkit). If, as we believe we have demonstrated, a film developed from national experiences can work in a local setting, it may be equally effective to transfer a locally developed film from one setting to another. This wider use would need to be built into participant consent for being filmed at the outset. Previous EBCD projects could also be encouraged to make their trigger films more widely available (subject, of course, to participant consent).

Given the comment from one patient that too few patients were used in the intensive care film, it may be valuable to make a more conscious effort to use clips from a wider range of people in representing the themes found in the analysis of all the interviews. In collections where fewer people have consented to the use of video, the inclusion of some audio clips could be considered.

The fundamental importance of co-design

As the intervention progressed, it became apparent to the research team that the extent of agreement or identification with the content of the films was not really the central issue. It is important to remember that the purpose of the films is to ‘trigger’ discussion. In traditional EBCD, too, they are only the start of a process of sharing ideas and concerns, and then working together to redesign care. If the national trigger films are sufficient to initiate such conversations, then local specifics can be brought into discussion along the way, and even disagreement with the content can generate fruitful discussion. But the elements of the intervention that have left both staff and patients feeling energised and empowered is the direct encounter with each other, the active partnership in co-design groups to achieve change, and the sense of tangible results.

It is possible to implement quality improvements that are based on patients’ wishes and experiences but without involving them in the change process. Staff could be shown a trigger film or interview data previously collected from patients and then decide as a staff working group what needs doing. It is certainly true that just seeing patient narratives on film can have a powerful effect. But the evaluation data from this study suggest that the face-to-face encounters with patients have been even more transformative, inspiring and revelatory to staff in making them think differently about their values and their practice. Having patients involved throughout is also a way of ensuring that improvement activities really do address patient concerns, and of holding staff to account to see change through. Their involvement – their physical presence – acts as a constant reminder to staff of who change is for, and why it is so important compared with other potentially overwhelming pressures and demands in their working lives. When staff volunteer – as they did in this study – the information that this is the first time in 20 years that they have really talked to patients in this way or that it is the most rewarding thing they have ever done in their careers, the full potential of EBCD to reconnect staff with their fundamental values of care and compassion is striking. We are grateful to one of our anonymous reviewers for the comment that ‘far from being a burden, involvement in this work helped to lighten (in many ways) the emotional and other forms of labour in which people are engaged’. Patients too report a different level of appreciation for staff, a belief that they will be listened to and that change is possible, and a renewed sense of trust in local NHS services.

The fact that both of our partner hospitals have independently decided to invest staff time and funding to adopt a co-design approach more widely in their organisations demonstrates their view of its value as a quality improvement intervention that benefits the organisation as a whole.

1. Aims/Objectives:

Aim:

To use a national video and audio archive of over 2,000 recently collected patient experience narratives to help develop, test and evaluate a rapid patient-centred service improvement approach (‘Accelerated experience-based co-design’).

Our objectives are to:

• Identify common themes arising from the University of Oxford’s national patient narrative archive in each of two exemplar care pathways

• Use these analyses to create ‘trigger films’ illustrating these themes which can be accessed and used by all NHS acute trusts

• Test these films alongside techniques that are part of the existing experience-based co-design (EBCD) approach to stimulate service improvement work led by staff, patients and carers in two provider organisations (Royal Brompton and Harefield NHS Foundation Trust and Royal Berkshire NHS Foundation Trust) in each of the two pathways

• Observe what happens in both pathways in each trust and evaluate the acceptability to patients and staff – and the impact - of this adapted approach to patient-centred service improvement

• Measure the costs of this accelerated approach compared with traditional EBCD

• Make recommendations for quality improvement practice in the NHS.

A traditional EBCD cycle typically takes around 12 months’ work in each trust to complete one pathway. In the accelerated version, we propose to halve the cycle to 6 months per pathway.

2. Background:

Improving patient experience is a key aim for the NHS. The new White Paper, ‘Equity and Excellence: Liberating the NHS’, emphasises ‘putting patients and the public first’, and ensuring that the way care and information are provided reflect what patients themselves think is important (Secretary of State for Health, 2010). To do this the NHS needs to draw on the narratives and experiences of those who have used and observed healthcare services at first hand, but there is considerable debate about the best methods for gathering and understanding patient experience information and then using it to improving the experience. Narratives are a powerful way to engage care providers at a deep emotional level in thinking how services could be improved (Greenhalgh et al 2005). Patient experiences can suggest priorities and solutions that may not occur to people who are immersed in service delivery (Locock 2001; Iles and Sutherland 2001). Many NHS organisations are now successfully experimenting with ways of gathering user views and using them to improve services. However, it is important that such work is based on rigorous research with a broad sample of users and a full range of different perspectives, rather than relying on a single representative on a committee or the collection of a few anecdotes (Dalyet al. 2007).

This project draws on and seeks to combine two existing initiatives that recognise the value of narratives: a national collection of 2,000 video and audio recorded narrative interviews with UK service users and a participatory action research approach to service improvement using patient experiences, Experience-Based Co-Design (EBCD).

The Health Experiences Research Group at the University of Oxford collects and analyses video and audio-recorded interviews with people about their experiences of illness. It now has an innovative national archive of over 2,000 interviews, all collected between 2000 and 2010, and covering 55 different conditions, which provides a unique source of evidence on patient experiences and priorities. The interviews are approved for use in research, teaching, publication, broadcasting and dissemination on the award-winning Healthtalkonline website, one of the first health information sources to meet the Department of Health’s new Information Standard. The interviews are increasingly used in teaching health professionals, and to inform health policy – for example, NICE guideline development now frequently incorporates evidence from Healthtalkonline, and the recent GMC guidance on end of life care drew on a specially commissioned analysis of interviews from the University of Oxford archive. The Oxford end of life care analysis has recently been compared with local interviews conducted by one PCT on end of life care. This showed that very few themes were identified locally that could not have been anticipated from the national dataset (Calabrese, 2010). The University of Oxford archive thus has enormous potential as an evidence base of patients’ experiences to support service change.

EBCD (Bate and Robert 2007a) has been implemented in collaboration with patients, families and staff in service improvement efforts in various settings, care pathways and countries. Integral to the approach is that patient, carer and staff experiences are used systematically to co-design and improve services. To date, this has involved an intensive local diagnostic phase, using rigorous qualitative research, including video or audio-recorded narrative interviews in which participants are invited to recount their experiences using a story-telling approach, highlighting concerns and priorities and identifying ‘touchpoints’ (key interaction points) along their journey. Trigger films based on these experiences are then used, firstly to enable patients and carers to share and discuss their experiences with each other, and then to stimulate discussion between local staff and patients, who can then jointly identify actions to bring about systematic, sustainable improvements. Building a coalition for change between staff and patients is central. The approach is being widely used in the UK, Australia and the Netherlands; The King's Fund is currently evaluating it as one of two improvement approaches in the Point of Care programme. There is evidence from independent evaluations that EBCD can bring about changes which significantly impact on patient experience, and are acceptable to a range of service users (Piper and Iedema, 2010).

Whilst EBCD may be effective, the diagnostic phase is undoubtedly lengthy and costly. Replicating 5 months of qualitative interviewing on each pathway in each trust is impractical at a time of recession. EBCD and the Oxford group use very similar narrative interview techniques. We will therefore develop and test a new accelerated form of EBCD by using the University of Oxford archive to provide the majority of the evidence on patients’ experiences and thereby scale up EBCD more efficiently across different settings. What we do not know is how far using national rather than local narratives will affect local credibility and buy-in, and whether anything else may need to be done locally to supplement national data. This project seeks to investigate the question of whether Accelerated EBCD can provide a rigorous and less costly alternative to conventional EBCD.

3. Need:

There is a clear and consistent high-level policy imperative to improve patient experience. But understanding what really matters to patients and how best to translate the policy rhetoric into real practical change remains a challenge. This project is supported by the newly formed Thames Valley Health Innovation and Education Cluster (TVHIEC) in South Central SHA. TVHIEC was funded to deliver an innovative skills development programme driven by a strong patient and client focus. The lead applicant (Louise Locock) is a member of the TVHIEC Partnership Board and its patient and public involvement sub-group, and will be the main link between the project and the HIEC.

Care which is redesigned around patient needs and preferences can improve:

• acceptability (e.g. switching care to a more convenient location)

• effectiveness (e.g. increased adherence to treatment regimes)

• cost-effectiveness (e.g. combining previously separate activities or appointments)

• targeting and equity (e.g. by challenging perceptions of particular patient groups, or by understanding and tackling what motivates some groups to resist or decline care)

• quality of life (by developing care that responds to issues patients think are important).

Two provider organisations have already signed up as partners in the project. The Director of Nursing at the Royal Brompton and Harefield NHS Foundation Trust (Caroline Shuldham) had already approached the Health Experiences Research Group to enquire about possible ways of using the interview archive to support service change. The trust was enthusiastic to discover the application was planned and that they could become a partner. Since this, another trust within South Central, the Royal Berkshire NHS Foundation Trust, has committed to become a partner. This project comes at a time when trusts are facing severe financial difficulties, and offers a valuable way to keep the quality of patient experience at the heart of trust priorities despite cuts in staffing and other resources. An advisory group of patients will be established in each local site for each pathway.

4. Methods:

5. Contribution of existing research:

EBCD and other patient-centred improvement techniques have already been widely adopted in practice settings. This research will add to our collective knowledge about how best to ensure patient perspectives are at the heart of service change, and to ensure this is done as quickly and cost-effectively as possible.

The archive of patient interviews collected by the Health Experiences Research Group has added significantly to our understanding of patient experiences across a range of conditions; their dissemination through the Healthtalkonline website already provides a resource for patients themselves, and around 80 peer review publications in social science and clinical journals have reached an academic and clinical audience. The interviews are also used in clinical education in a number of universities, and professional training packages have been produced in partnership with NHS Education South Central. Recently, a secondary analysis on end of life care has contributed to the new GMC guidance on end of life care. But there is considerable untapped potential to use this archive more effectively to support service change and to inform policy-makers, managers and practising clinicians, providing a high standard of qualitative research evidence and reducing the need to replicate local research into patient experience. Both EBCD and the work of the Health Experiences Research Group are fundamentally concerned with drawing on people’s accounts of their experiences to identify commonalities and potential improvements, as well as providing a channel for patients’ voices in what it is like to have their condition. All the health experiences interviews are copyrighted for use in teaching and learning, as well as research, publication and the website.

For many participants, knowing that their experience may be used to help improve things for other people is an important motivator. Each local provider site will have patients directly involved in helping us explore the important research question of how far nationally derived trigger films resonate with local patient concerns and what additional work needs to be done locally to identify additional issues. They will then be engaged in co-designing services with staff, and monitoring the results. The researchers involved in the bid all have a track-record of working at the interface between research and practice, and take seriously the need for knowledge transfer.

Within TVHIEC, the results of the project will feed directly into future plans for innovative staff development, and will be extended to other conditions and sites. The TVHIEC user panel will be closely involved throughout the project. Nationally, the HIECs are working together to share learning and new approaches. We anticipate that the project would result in the production of a wide range of trigger films and a supporting service redesign methodology which would be available to other provider organisations through a subscriber website, in partnership with TVHIEC and the DIPEx Charity, which runs the Healthtalkonline website. We propose to hold two major dissemination events, one led by TVHIEC and one led by The King’s Fund, to ensure findings and recommendations are widely shared. We will of course also publish in peer review journals and present at national conferences, especially the SDO joint annual conference with the Health Services Research Network and the Organisational Behaviour in Health Care Symposium.

6. Plan of Investigation:

As noted above, our accelerated EBCD model is expected to halve the amount of time spent per care pathway in each trust. The figure below provides an overview of how our proposed timetable compares to a traditional EBCD cycle.

7. Ethics

Assurances will be given to participants that all discussions and interviews are entirely confidential. All interviews and field notes will be coded for anonymity and stored in a locked filing cabinet. Participants identities will be protected through anonymisation or pseudonymisation of data as required. It is intended that anonymous abstracts from the interviews may be used in publications arising from this research but any materials will not be used without the full permission of participants.

The study team will ensure that it adheres to the Research Governance Framework with respect to confidentiality. Any communication by email will not identify participants and their identities will be protected by identity codes. Publication of direct quotations from research participants may be included in project outputs, such as the final report, conference presentations and articles submitted to peer reviewed journals. However, all identifying information about participants will be removed to ensure their anonymity and to protect their identity.

8. Insurance

The University of Oxford maintains Public Liability and Professional Liability insurance which will operate in this respect.

9. Project Management:

Funding has been included to enable the Thames Valley HIEC to provide project management support throughout the project. The new HIEC Programme Manager, Richard Freeman, will take on this role and will liaise with team members in different institutions to ensure each stage of the project is completed on time. We will establish a core group and a project advisory group at the outset of the project.

The project manager will convene regular meetings of both groups. The core group will comprise the coapplicants and project manager, and will be chaired by Louise Locock as Principal Investigator. The project advisory group will comprise staff, patient and carer representatives from both our partner provider sites, representatives from the Department of Health Public Engagement and Patient Experience directorate, and core group members. It will be chaired by Cathy O’Sullivan, Interim Director of the HIEC.

The individual components of the project will be managed on a day-to-day basis by Louise Locock (analysis of interview archive and production of trigger films), Glenn Robert (development and implementation of accelerated EBCD intervention), and Annette Boaz (evaluation). Glenn Robert will work closely with service improvement facilitators at Royal Brompton and Harefield and Royal Berkshire Hospitals, who will also have day-to-day managerial support within their trusts from Caroline Shuldham and Jonathan Fielden.

The investigators will be involved in reviewing drafts of the manuscripts, abstracts, press releases and any other publications arising from the study. authors will acknowledge that the study was funded by the NIHR SDO programme. Authorship will be determined in accordance with the ICMJE guidelines and other contributors will be acknowledged.

10. Service users/public involvement:

Both EBCD and the work of the University of Oxford Health Experiences Research Group are fundamentally concerned with giving patients (and family carers) a voice as the experts in what it is like to have their condition or face a particular health situation. The project team do not believe that including patients as participants in research is sufficient in terms of PPI and we have used many other ways of involving patients and public, for example in guiding our research strategy, as members of steering groups, in helping to appoint new researchers, disseminating results, co-authoring articles and commenting on conceptual frameworks.

The Health Experiences Research Group has been primarily focused on using in-depth patient narratives to support other people going through a similar condition or facing similar health choices, through www.healthtalkonline.org, as well as providing insights for personal professional practice. EBCD has used similar narratives to stimulate service improvement. Both use in-depth interviewing, with an initial unstructured invitation to ‘tell me your story’, to give people space to elaborate on what matters to them, not driven by a professional or organisational agenda. Both use video recording to enable patients to give vivid and direct testimony. A key principle at the heart of both these existing workstreams is that we should base our understanding of what matters to patients and carers on rigorously conducted and analysed research with a broad range of people, rather than relying on a few anecdotes or the involvement of one or two representatives on daunting NHS committees. At the same time, this project seeks to address the problem that trying to replicate such research in each locality for each pathway is not only expensive but very demanding of patients and carers who may be facing an extremely difficult and emotional time in their lives. We have recently compared themes emerging from the University of Oxford archive on what matters to patients in end of life care with interviews on the same topic done locally by one PCT. This demonstrated that very few themes were identified locally that could not have been identified from the national dataset (Calabrese, 2010). We therefore feel confident that the archive has great potential to be used as an evidence base of patient experiences to support service change.

Once the trigger films have been developed, Glenn Robert will work with our two provider partner organisations and their service improvement teams to identify a group of local patients and carers with an interest in intensive care and lung cancer. Stage one of their involvement will be a focus group workshop at which they will view the trigger films and then discuss whether the films adequately capture the things that matter to them, and whether there are specific additional issues they would like to raise about local services. Depending on the outcome of these discussions, some further local data collection may be undertaken by the service improvement team to supplement the national dataset. Stage two will be to convene co-design working groups of both staff and patients/carers, to agree and implement specific service redesign projects. Building a coalition between staff and service users is central to this process. The project advisory group will include patient and carer representatives from both our partner provider sites.

References:

This protocol refers to independent research commissioned by the National Institute for Health Research (NIHR). Any views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the SDO programme or the Department of Health.

Dr Glenn Robert

Senior Research Fellow, National Nursing Research Unit

PhD, MSc, BA (Combined Hons)

King’s College London

James Clerk Maxwell Building, 57 Waterloo Road, London, SE1 8WA

Sue Ziebland

Research Director, Health Experiences Research Group

BA, MSc

University of Oxford

2nd Floor, 23-38 Hythe Bridge Street, Oxford, OX1 2ET

Dr Vicky Harrison

Policy director, Health Experiences Research Group

BA, MA, DPhil

University of Oxford

2nd Floor, 23–28 Hythe Bridge Street, Oxford, OX1 2ET

Dr Annette Boaz

Lecturer in Translational Research, Division of Health and Social Care Research

BA, MSc, PhD

King’s College London

7th Floor, Capital House, 42 Weston Street, London, SE1 3QD

Dr Caroline Shuldham

Director of Nursing and Clinical Governance

MSc, PhD

Royal Brompton and Harefield NHS Hospital Foundation Trust

Sydney Street, London, SW3 6NP

Dr Jonathan Fielden

Chief Medical Officer/Director Clinical Standards

FRCP, FRCA, BSc, MB, ChB

Royal Berkshire NHS Foundation Trust

London Road, Reading, RG1 5AN

Dr Farasat Bokhari

Post Lecturer, Division of Health and Social Care Research

Qualifications PhD

Employer King’s College London

Work Address 42 Weston Street, London, SE1 3QD

About yourself and the service

What is your role in the Trust?

What do you consider to be the main issues in your service?

This project

What made you get involved in AEBCD?

What are your hopes from this partnership?

EBCD uses an external professional researcher as process facilitator whereas AEBCD uses an internal clinical researcher for this role. What do you consider to be the advantages and disadvantages of the latter?

EBCD uses films made by patients in each participating hospital whereas AEBCD uses a national video archive of patient narratives. What do you consider to be the advantages and disadvantages of the latter?

Contribution to service delivery

How do you envisage the results of the project will feed directly into future plans for innovative staff development?

How is AEBCD addressing the priorities highlighted at the NHS White Paper ‘Equity and

Excellence: Liberating the NHS’ on ‘putting patients and the public first’?

How can AEBCD help maintain quality of patient experience despite cuts in staffing?

The future of this project

How do you see AEBCD contributing to sustainable service improvement?

How do you envisage AEBCD and footage of health experiences being promoted through a subscriber website to train staff in other wards?

Is there anything else you would like to add?