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
- compassion
- 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 or catalyst 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
Funding acknowledgement:
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).
Relational Analytics has been applied by a number of organisations to health and education sectors in the UK and in Australia. There is gathering evidence that the focus on “relational” aspects is a fairly accurate proxy, also providing a basis to determine what needs to change.
Is Relational Analytics a generic method or just the work of the company that goes by that name?
HI, Steve, check out [Moderator note: link broken and removed as of October 2021: relationalthinking[dot]net… relational-analytics-2] describing the relational approach which broke ground early in relation to multiple bottom line reporting. The Relational Proximity Framework “tool” has been used in a number of sectors (health, education, peacebuilding) and in different contexts (private, public sector, organisational) and “picked up” by consultants/companies around the world (from the US to Australia, from South Africa to Singapore. My interest is its applicability in discussion of measures of “systems transformation” to achieve the Sustainable Development Goals
Thanks Beris
Hi Steve
I am new here so forgive me if I post poorly. I believe from reading this thread that you may be one of those wonderful people Malcolm Gladwell identifies in The Tipping Point as a Maven.
Relational Analytics is the company and as such not trademarked. It owns the trademark Relational Proximity(r) to describe the extent of the gap or otherwise in any given relationship and of course the founders published work is all copyright in their books.
I like to think of the “field” as Relational Thinking. Relational Thinking being any philosophical, psychological, sociological or any other logical approach which seeks to better understand the nature of human relationships, between individuals, within groups, between groups and in multiple contexts. It also seek to address problems where human beings are involved from the premise that the first thing to fix will always be the relationship, and that many problems won’t arise if the relationship is properly (whatever that might mean) built in the first place.
So Relational Analytics is one body of theory and ideas in the field of Relational Thinking (and one I happen to have a lot of time for) but not necessarily the only such body of theory.
I think I would also want to suggest that Relational Thinking is about relationships where the emotional bond is expressed best by Agape and not those where that bond is expressed in part by Eros. So there is a specific type of human relating that is about pairing and then their is another type that is about communing. i have no idea but I suspect some erudite person on this site will tell me that is nonsense – or if I am lucky will tell me yes that is exactly what Professor Finkledove said in 1923.
I am in the throes of writing a blog about why we have moved away from communion to individualism in our society but it is not quite there…..struggling to work out exactly what I want to conclude.
Anyway, I hope that helps.
Thanks for this fascinating post. I wonder about your experience with using AEBCD to reflect on the service experience for minority groups. The trigger film on ethnic minority mental health is a rich archive of people’s experiences navigating a health system that struggled to recognise diverse ways of expressing and experiencing mental illness. I’ve used it in teaching and found that medical students and junior doctors can readily recognise and reflect upon their own ways of practising, as something that they could modify to be more sensitive to the needs of the patient. However, when the same film was used with the same junior doctors in a health system setting (as a way of reflecting on ways to improve the service) their reaction was to essentialise the discomfort described by the person as something related to “culture” or another health service, but with little relevance to their own service. This was despite patients themselves stating that the films did reflect their general experience.
Dear Christine
That’s really interesting to hear that you’ve been using the films in these two different ways and getting different responses. We haven’t had direct experience of using the ethnic minority and mental health film ourselves for service improvement – we made it as a resource for others to use as part of a follow-on grant, so I’m glad someone’s using it. What you describe – patients saying the films represent their experience but clinical staff distancing themselves or saying the data isn’t locally applicable – is exactly what we thought we might find in the AEBCD study. So we were genuinely surprised that having data from non-local patients seemed to be convincing, and potentially less threatening. So why is your experience different? That isn’t a rhetorical question – I really don’t know the answer! It’s difficult to know without being there what the dynamic was like in the room. Defensiveness may have resulted from other local factors. Or it may be something to do with the power differentials being greater in mental health and also when there are ethnic differences. Perhaps closing the power gap is easier when the clinicians don’t already feel so distant from the client group. But I would love to know lots more detail and hear your reflections. .
Thank you for this thought provoking post Louise. I believe the value of using a generic set of videos or data is in starting a new conversation in terms of if, and how, these resonate with the local context and if they don’t, why. This in itself generates new data and insights into the unique differences and challenges in a local area and potential solutions. In line with Steve’s comment above, if enough time has elapsed, these could also provide an opportunity for comparison – between funding mechanisms and models of care.
I am currently in the process of working with nurses and patients in outpatient hospital clinics to test the useability of a conceptual model describing the process of patient satisfaction and enablement in general practice nurse consultations. This model was theorised as a result of integrating data from patient surveys, and interviews with patients, nurses and general practice managers (http://rdcu.be/xEzA/). While the aim is to hopefully implement the model and improve the quality of care and patient outcomes, this is only achievable in light of the conversations that are generated in this new setting – new data – elucidating the unique needs of patients in these clinics. In this particular setting, it is exactly the small changes you refer to above that are important – the patients are in general sicker than those in general practice, and hence need fewer questions, more time, more reassurance …
Perhaps the key point is to know when data is beyond its use by date and when new data is required.
Hi Jane – I think the clue is in the word ‘trigger’ in ‘trigger film’. As long as you can show something powerful and engaging enough to start a discussion that’s what matters – then local co-design discussions can bring in the local data and issues. As you say, even if a trigger film prompts disagreement that can help shed light on what’s different here and why.
As to whether patient experience data has a ‘use-by’ date, maybe that depends on what the use is. In 14 years of working on patient experience narratives I’ve often heard comments such as ‘But surely that must be out of date by now and the service has moved on?’ To a degree that may be true – perhaps if people are talking about experience of a particular treatment or diagnostic test. But I am always struck by the longevity and consistency of what patients say matters – it tends to be about the human side of illness, the relationships, kindness, communication and information.
Thanks for the article – I bet your themes such as time and continuity will prove pretty perennial….
I have marked your paper to read later. Patient satisfaction is ripe for the use of narrative capture techniques, referred to in an earlier comment.
As ever, useful and thoughtful words Louise! I particularly like the insight about being ‘mesmerised by measurement’ and shifting our discourse to improvement. The issue we so often face when working with health and social care providers and commissioners is ‘but our population is unique’, meaning that we have to keep collecting and measuring opinions and insights. Far better to turn our lens towards making unique, co-designed solutions.
Thanks! Couldn’t agree more. We came up with another one the other day, ‘mesmerised by (data)-mining’ – finding ever-more sophisticated ways to mine qualitative free text data, giving a feeling of reliable quantification, but without reflecting on the limitations of the process or on the circumstances in which data were generated.
This is just so I can tick the “Notify me” box to remain in touch as I forgot when I posted my first comment.
This resonates with a recent essay on understanding community priorities and the economics of well being. See https://www.themandarin.com.au/85093-nicholas-gruen-academy-partners-try-wellbeing-frameworks/ and my comments in the post. It’s an interesting area that I feel is still being addressed from expert hierarchical standpoint rather than seeking to take a lead from the community, despite attempts to consult the community.
For an example of a means of gathering deep insights into the attitudes and opinions of a complex community, free from the constraints of predefined conceptual structures, see https://flourishinganddisadvantage.com/2017/04/02/group-sensemaking/?lipi=urn%3Ali%3Apage%3Ad_flagship3_feed%3BVHwmp1OhRLC2LN4Vxh2W6Q%3D%3D
Thanks for the links! Rooting things in the unstructured narratives of the people whose views we are seeking is very close to my heart. For Healtthtalk studies we always start with an open-ended ‘tell me’ question. but the group sense-making/analysis ideas are fascinating.
The first link has also made me reflect again on how the *size* of change looms so large in much discourse: it’s got to be big to matter. Yet what we know from listening to people involved in healthcare improvement, and doubtless many other fields, is that apparently small changes or actions can often make a momentous difference to people’s experience. I worry we get so hung up on measurable, transformative change that we lose sight of the importance of a kind touch or word; making sure people don’t lose their hearing aids in hospital; just telling people what’s going on and what to expect; reducing noise at night. For me that’s the greatest strenght of narrative and codesign – bringing the human to the fore.
The point about scale is important. There is an idea that direction is more important than an aiming point, an end target. As soon as we start to modify a system it will shift itself and we need to be constantly reassessing and adjusting our heading.