By Louise Locock
When we’re trying to improve the experience of health care, social care and other services users, is there a fast, rigorous way to include their perspectives that doesn’t involve repeatedly collecting new data from them and their families?
Measuring, understanding and improving people’s experience of services has become a priority. There is now an international focus (at least in the West) on person-centred care. The English National Health Service has led the way among health systems by introducing the first nationally mandated patient survey.
Despite the strong political and organisational focus on improving care, reports of unsatisfactory experience continue in even the best funded care systems.
In health care, we already know the broad aspects of care that users and their families think are important, from a large and growing international body of both quantitative and qualitative research. We know, for example, that people attach great importance to:
- respect and dignity
- timeliness and convenience
- information and communication
- meaningful involvement in decision-making.
Yet we do not act on this knowledge consistently, and seem to have become mesmerised by measuring. The challenge is to find meaningful ways to enable care organisations to learn from this evidence and to move beyond gathering data on experiences to use these data to improve care.
There is increasing interest in the use of in-depth qualitative research to gain richer and more meaningful accounts of what it is like to receive care. Narrative and stories, oral or written, are a powerful way of accessing human experience, and can engage care providers of health and social care at a deep emotional level in reflecting on how services could be improved, drawing on theories of narrative persuasion. Again, however, practitioners and organisations struggle to make effective use of such qualitative experiential evidence to improve local services. Is there an alternative way forward?
Accelerated Experience-Based Co-Design
In an earlier blog post, Glenn Robert and Annette Boaz described the process of Experienced-Based Co-Design. This is a participatory action research approach and marks a significant contribution to using narratives and involving service users in quality improvement in health care. It has been shown in independent evaluations to be effective in making specific quality improvements to particular services, and promoting broader cultural and attitudinal change.
In summary, Experience-Based Co-Design projects typically last 12 months, beginning with a 6-month ‘discovery’ phase, which combines observations with interviews with local patients and staff about their experiences of a service. Experience narratives are video-recorded, and analysed to develop a ‘trigger film’ to stimulate discussion between staff and users about potential quality improvements. The film focuses particularly on ‘touchpoints’ – moments of interaction between the individual and the service where improvements are possible.
The discovery phase is characterised by rigorous, narrative-based research with a broad sample, rather than relying on a single ‘user involvement’ representative or a few anecdotes. At least as important is the subsequent co-design phase, in which service users, families and staff come together as partners in small working groups to set priorities for quality improvement, and design and implement changes together. This is unlike other experience-based approaches in which users are asked for their views but then staff and/or design scientists take sole responsibility for redesigning services.
However, the discovery phase before quality improvement can begin is felt by staff to be lengthy and costly, and has been reported as a barrier to adoption of Experience-Based Co-Design. Undertaking 5-6 months of qualitative interviewing on each pathway in each hospital is seen as impractical, and represents a significant barrier to uptake.
We developed and tested an accelerated form of Experience-Based Co-Design, drawing on an existing United Kingdom national archive of narrative patient interviews. The archive is described first, followed by its use in Accelerated Experience-Based Co-Design.
Health Experiences Research Group archive
The Health Experiences Research Group at the University of Oxford has collected a substantial body of qualitative social science research into personal experiences of health and illness over the last 15 years. The collection now includes over 4000 video and audio recorded narrative interviews on over 100 different health topics. Each topic is the subject of a stand-alone qualitative research study investigating the question ‘what are the experiences and information and support needs of people with this condition?’ In each case a maximum variation sample of around 40 people is recruited, combining variation in demographic characteristics as well as types of experience. As well as acute and long term physical health conditions (such as cancers, neurological conditions, heart disease, diabetes), the collection includes a wide range of topics, including mental health conditions, experiences of family carers, disability resulting from traumatic injury, autistic spectrum disorders, bereavement, family members of adolescents who self harm, pregnancy and breastfeeding.
Each collection is also published through a unique online dissemination route for patients, families and friends, the public and care professionals, with free access to summaries of the experiences of each condition or topic, illustrated by thousands of video and audio clips.
Accelerated Experience-Based Co-Design
In collaboration with Glenn Robert and Annette Boaz, we tested the Accelerated Experience-Based Co-Design approach in two services (lung cancer and intensive care) in two English hospital trusts, and conducted an ethnographic process evaluation and cost analysis (Locock et al., 2014). We wanted to see if the Health Experiences Research Group archive could be used eliminate the local patient discovery phase in Experience-Based Co-Design, thereby saving both cost and time. If successful, the aim was to provide a trigger film of findings from the analysis which could then be re-used in any health organisation at no further cost.
Our research questions were particularly focused on whether using national rather than locally derived data would:
- adversely affect staff engagement;
- fail to represent issues of importance to local users; and,
- reduce the impact of Experienced-Based Co-Design.
In fact the accelerated approach proved readily acceptable to all participants; using national rather than local narratives did not adversely affect local National Health Service staff engagement, and may in some cases have made the process less threatening or challenging, resulting in a less defensive response.
Local users felt the national interviews generally reflected important themes although a minority felt they were more negative than their own personal experience. However, they served their purpose as a ‘trigger’ to facilitating discussion between users and staff, and generated a comparable set of improvement activities to those of previous Experience-Based Co-Design projects, but this was achieved in 6 months rather than 12, and at around 40% of the cost.
We have now produced a growing collection of re-usable trigger films.
How can we continue to emphasise using the data we already have? Is it ethical to keep collecting data but not using it for improvement? Do you have suggestions for other circumstances where using a more generic set of videos or other data could be as effective as new local data collection?
To find out more:
Locock, L., Robert, G., Boaz, A., Vougioukalou, S., Shuldham, C., Fielden, J., Ziebland, S., Gager, M., Tollyfield, R. and Pearcey, J. (2014). 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. Health Services and Delivery Research, 2, 4. (Online): https://www.ncbi.nlm.nih.gov/pubmed/25642558
This study was funded by the UK National Institute for Health Research Health Services and Delivery Research Programme 10/1009/14.
Department of Health disclaimer:
The views expressed are those of the author and not necessarily those of the National Health Service, the National Institute for Health Research or the Department of Health.
Biography: Louise Locock is Professor of Health Services Research at the University of Aberdeen, and was until recently Director of Applied Research at the Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, UK. Her interests are in qualitative research methods; patient experience of illness; patient and public involvement in health care and research; and how we can improve the use of patient experience data for service improvement. She is a participant in the Co-Creative Capacity pursuit which is part of the theme “Building Resources for Complex, Action-Oriented Team Science” funded by the National Socio-Environmental Synthesis Center (SESYNC).