National Institute of Health Research

HS&DR - 10/1009/14: Testing accelerated experience-based co-design: using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement

Project title Testing accelerated experience-based co-design: using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement
Research type Primary Research
Status Project complete
Start date September 2011
Publication date

February 2014

Link to journal publication
Cost £ 305,376.00
Chief Investigator Associate Professor Louise Locock
Co-investigators Dr Jonathan Fielden (Royal Berkshire NHS Foundation Trust), Dr Vicky Harrison, Professor Glenn Robert (King's College London), Dr Caroline Shuldham (Royal Brompton & Harefield NHS Foundation Trust), Professor Sue Ziebland (University of Oxford), Farasat Bokhari (University of East Anglia), Dr Annette Boaz (St George's University of London)
Contractor University of Oxford
Plain English summary This proposal brings together two successful initiatives a national archive of recent video and audio patient experience interviews, and a tried and tested organisational change method. It will harness their strengths to develop and test a less costly but as effective way of redesigning services to be more patient-centred. Improving the experience of patients is a top priority for the government and the NHS and of course for all of us who use the NHS. But to do this we need to understand better what it is really like to be a patient with a particular condition, and patients need a direct say in identifying changes to health care that will make a real difference to their experience. This requires more than the voice of a single representative on a committee or the collection of a few anecdotes. Many health service organisations are now successfully experimenting with ways of gathering patient views more systematically and using them to improve services. Getting patients to tell their story in an in-depth interview is an effective way of capturing rich, detailed understanding of patient perspectives. We also know that stories or narratives are a powerful way to engage those involved in care at a deep emotional level in thinking through how care could be improved. It is important that such work is based on rigorous research with a broad sample of patients to get a full range of different perspectives, but collecting and analysing narratives this way is an expensive and time-consuming process. At a time of recession, it is unlikely local health services will be able to repeat this for every health condition in each locality. This is where the Health Experiences Research Group at the University of Oxford comes in. The group specialises in collecting and analysing video and audio-recorded interviews with patients about their experiences of illness. Summarised findings are disseminated to patients, families and health professionals on the award-winning Healthtalkonline website, one of the first health information sources to meet the Department of Health s new Information Standard. There is now a national archive of over 2,000 recently collected interviews covering 55 different conditions. These interviews are increasingly used in teaching health professionals, and to inform health policy for example the recent General Medical Council guidance on end of life care drew on an analysis of interviews from the University of Oxford archive. But there is considerable untapped potential to use the archive more effectively to support service change. Our proposal is to work in partnership with experts from King's College London and the King's Fund who have been developing and testing the use of patient experience interviews to stimulate service change, using an approach called 'experience-based co-design' or EBCD. In EBCD, trained interviewers normally spend several months interviewing local patients and staff to understand their perspectives, and then use edited films of the patient interviews to stimulate joint work between patients and staff to redesign services. In this project, we will instead use the University of Oxford archive to produce films of patients talking about their experiences of two different conditions (intensive care and lung cancer), saving several months of work and staff time. We will then use the films in close partnership with patients and staff in two different hospital trusts (Royal Brompton and Harefield and Royal Berkshire) to help them plan improvements in care. Specialists in evaluation and health economics from King's College London will study what happens, how staff and patients respond to the initiative, and what the costs are, so we can see whether this new approach is less costly but as effective as existing EBCD methods. The NHS Thames Valley Health Innovation and Education Cluster (TVHIEC), a partnership of different organisations working to improve staff training in the NHS, is keen to support the initiative and disseminate the findings. If the approach proves successful, the TVHIEC will seek to spread the learning to other conditions and other NHS organisations. Our partner provider organisations are also keen to explore extending the approach to other pathways within their trusts. The University of Oxford health experiences studies all have full NHS ethics approval, and the patients whose narratives are stored in the archive have already given their consent for their interviews to be used for training. We will apply for ethics approval for the rest of the study in the usual way. This team brings together strong expertise in patient experience research; organisational change and service improvement in the NHS; evaluation studies and health economics. All the team members have long experience of working at the boundary between research and practice, doing research which is of real benefit to the NHS, and making sure their findings are communicated effectively. In different combinations, the team members have worked and published together before, and are enthusiastic about the possibility of combining two proven research programmes to provide a new, faster and less costly way of helping the voice of patients improve the quality of care.
Scientific summary This proposal has two components: the intervention (adaptation and implementation of an accelerated form of Experience-based co-design), and an evaluation. For clarity we deal with the methods of each of these in turn, though in practice they will proceed side-by-side. THE INTERVENTION - ACCELERATED EBCD EBCD uses a participatory Action Research design which involves the coupling of participation and research to action and change . Integral to the approach is that patient, carer and staff experiences are used systematically to co-design and improve services. Our proposed accelerated form of EBCD involves several different phases, adapted from traditional EBCD. A secondary analysis of relevant patient narratives from the Oxford Health Experiences Research Group s archive will be used to identify key 'touchpoints' in two patient pathways (intensive care and lung cancer), replacing much of the intensive local diagnostic phase normally used in EBCD. Working with Glenn Robert and the local service improvement facilitators, a researcher from the group will put together a trigger film around each pathway. The trigger films will be shown at a workshop with local patients and carers, to test for resonance with their concerns and identify if there are any specific local service issues not adequately captured in the national interviews. Depending on the outcome, additional data may be collected by the service improvement team in each partner provider site to supplement the national dataset, with support and advice from Glenn Robert. This could include new interviews or further focus groups. The local facilitators (supported by the health experiences group researcher and Glenn Robert) will use a combination of observation and one-to-one interviews with staff to learn about their own experiences of the 2 care pathways and their views and expectations about local patients experiences. Findings will be presented and discussed at a staff feedback meeting. A multi-disciplinary group of local staff, patients and carers will then be brought face-to-face in a co-design workshop, to exchange and share their experiences of giving and receiving services, using the edited trigger films in group exercises to focus on key touchpoints where systematic and sustainable improvements might be made. The patients and staff will share their respective priorities for improvement and agree which they will work on together in co-design subgroups; these will be the priorities for improvement adopted by each of the pathway projects. Building a coalition for change between staff and patients is central. A key feature of the approach is that the interventions will be designed collaboratively by patients and staff, with continued support from local service improvement facilitators. The subgroups will record their activities and feed this information into the evaluation. This process will be repeated for the two pathways, using a staggered timetable. THE EVALUATION The evaluation will be a process evaluation and cost analysis, building on existing evidence already available about the effectiveness of patient-led service improvement approaches. Whilst we will document what improvement activities take place as a result of the intervention in each trust, our aim is not to evaluate EBCD in itself. Our starting-point is that it has already been shown to be an effective approach, and our aim with the evaluation is rather to demonstrate whether an accelerated version of it is a workable, cost-effective and acceptable alternative. The evaluation will be led by an organisational ethnographer, supervised by Boaz, using a longitudinal comparative case study design well suited to the study of complex change. In effect we will have four cases : two different pathways in each of two trusts. The ethnographer will be in post throughout the project and thus able to observe the set-up period during which the Oxford research group will be creating the trigger films, as well as the implementation phase. The evaluation will use multiple data sources, including observation, interviews, documentary analysis and administrative data on costs The ethnographer will interview and observe all the key research team participants. Meetings of the core group and project advisory group will all be included in observations.Within each trust, stakeholders to be interviewed and observed will include not just staff, patients and carers involved directly in the intervention, but also the service improvement facilitators and senior managers at each site. All staff and patient workshops and meeting associated with the co-design process will be included in observations. Relevant board or other senior management committees may be observed.Observations and brief conversations will be recorded as field notes; interviews will be transcribed for framework analysis (Ritchie and Spencer, 2004). Data on staff and non-staff costs and time input will be systematically collected through micro-costing procedures and compared to data collected in existing EBCD evaluations (including Jocelyn Cornwell s work on the Point of Care Programme), with the support of a health economist and local trust staff. Those involved in the co-design process will also contribute to the evaluation their record of service improvement activities undertaken and changes made. At all stages of the evaluation, the ethnographer will be collecting data to address our 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 perspective, how well do they feel national narratives capture and represent themes important to their own experience? 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 to 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?
  1. Testing accelerated experience-based co-design: using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement

    Authors: Locock L, Robert G, Boaz A, Shuldham C, Fielden J, Ziebland S

    Reference: Organisational Behaviour in Health Care (OBHC) conference book 2014;.

  2. The use of AEBCD within ITU and Lung Cancer Services at the Royal Brompton and Harefield NHS FT

    Authors: Pearcey, J and Tollyfield, R

    Reference: It will appear at part of an Internal poster/abstract exhibition run yearly at the hospital, it allo 2012;n/a

  3. Using a national archive of patient experience narratives to promote local patient-centred quality improvement: an ethnographic process evaluation of accelerated experience-based co-design

    Authors: Locock L, Robert G, Boaz A, Vougioukalou S, Shuldham C, Fielden J, Ziebland S, Gager M, Tollyfield R, Pearcey J

    Reference: Journal of Health Services Research & Policy 2014;doi: 10.1177/1355819614531565


Protocol (PDF File - 242.1 KB)

Commissioning Brief (PDF File - 67.1 KB)

Addendum This project was commissioned by the NIHR Service Delivery and Organisation (NIHR SDO) programme under the management of the National Institute for Health Research Evaluations, Trials and Studies Coordinating Centre (NETSCC) based at the University of Southampton.


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