Secondary analysis of qualitative video health experience interviews to inform policy and practice - what matters most to users about quality of care?

Our proposal aims to use secondary analysis to provide evidence for user-centred quality improvement in health and social care. It builds on two existing initiatives:
1. An archive of 3000 qualitative video and audio interviews on over 80 topics with users about their health and illness experiences held by the Health Experiences Research Group (HERG), University of Oxford (and disseminated publicly on www.healthtalkonline.org run by the DIPEx Charity)
2. Experience-Based Co-Design (EBCD), a participatory action research approach which actively involves service users in service design and has been implemented in over 60 care services in six different countries since being piloted in 2006. Past evaluations have shown it to be effective in achieving quality improvement and cultural change.
Both initiatives include video-recorded in-depth interviews with people talking about their experiences. HERG interviews are nationally collected and wide-ranging, whereas EBCD interviews are collected locally with a more specific focus on 'touchpoints' - key interactions between users and services where quality improvements can be made - in each care setting. In EBCD analysis of these touchpoints is used to create a 'trigger' film which staff and users watch together to start a discussion about improving care locally, before setting up co-design working groups to plan and implement changes together.
These two initiatives have already collaborated on a recent study for the National Institute for Health Research (NIHR) which demonstrated EBCD in two care pathways based on secondary analysis of HERG interviews rather than new local interviews worked just as well, saving time and cost.
This provides a strong evidence base to propose further secondary analysis to support care organisations seeking to apply experience-based quality improvement in an affordable and timely way across more conditions. We will reanalyse ten of our existing interview collections. In each case the primary research question for the secondary analysis will be: What touchpoints do users identify in their experiences of care where quality could be improved?
The HERG collections are generally focused around a particular condition or health topic. However, there is much material in the collections that could inform service settings and integration of care across sectors. Alongside the analysis for touchpoints in each condition, we will also ask: What are the touchpoints for a) outpatient care and b) interactions between health and social care across a range of different conditions which could be used to redesign services?
The secondary analyses will involve a researcher going back to the full transcript collection to identify touchpoints. On healthtalkonline, we also have a set of lay summaries identifying key topics of importance to interview participants in each condition (though not specifically analysed for touchpoints). A key further empirical question to ask is therefore: What touchpoints would emerge from a re-analysis of the website summaries, compared to re-analysis of the full transcripts? Can further time savings be made in identifying touchpoints by this method or is too much lost in the process?
We will also involve service users in the secondary analysis process, supporting them in analysing both selected transcripts and selected website summaries, and discussing with them similarities and differences in the touchpoints they identify compared to the social science researcher.
We will disseminate findings from the secondary analysis in the form of a series of trigger films made in collaboration with the DIPEx Charity, using our existing video recordings to illistrate the touchpoints we identify, and make these available through both www.healthtalkonline.org and the Point of Care Foundation online EBCD toolkit. With the close and active support of NHS England our findings will have a clear route to impact on policy and practice

Who will benefit from this research?
Our targeted audience for the outputs of this secondary analysis for service improvement covers a wide range of health and social care organisations, including hospitals, primary and community care organisations, mental health services, clinical commissioning groups, local authority social services, residential social care organisations.
Even more importantly, users of these services are at the heart of this proposal; the ultimate aim is to provide evidence of user perspectives to support experience-based co-design, which in turn involves users as equal partners in co-designing user-centred improvements in care.
At national level, NHS England are strongly supportive of efforts to promote affordable and timely ways of implementing EBCD as one way to change the culture of care services, and will be committed to disseminating the the trigger film resources

How will they benefit?
Health and social care organisations will benefit from the availability of secondary analysis findings identfying what matters most to service users about the quality of care they receive. These findings will be disseminated through a series of trigger films (from our existing archive of video interviews) that can be re-used in different settings, without requiring expensive and time-consuming local research before co-design activities can begin. We will be able to offer analyses in a wider range of conditions than hitherto. By linking these resources through the Point of Care Foundation EBCD toolkit as well as hosting them on the 'improving care' section of www.healthtalkonline.org, we will maximise awareness-raising. The EBCD toolkit is now regarded as the main source of guidance on using the technique in healthcare. In its first 18 months of existence (October 2012 to March 2013) the toolkit (all pages included) was viewed 49,469 times, and pdf guides from the toolkit were downloaded 12,392 times. Healthtalkonline averages 6-8 million hits per month. Official endorsement from NHS England of EBCD as a valuable technique will steadily increase the number of organisations applying it and therefore using the evidence and resources we will produce. We are also in contact with the Care Quality Commission who are interested in what the interview archive has to offer, so we will invite them to promote the resources through their networks.
Users will benefit from more organisations accessing evidence on what matters most to users about the quality of care, and having an opportunity to apply co-design techniques to their service improvement work. By offering a relatively cheap way to start using EBCD in several different topic areas, we will lower the barriers for organisations to make a move in this direction. Individual users in co-design will benefit from the process and the sense of partnership it generates, but ultimately the aim is to make care more user-centred for all. Individual staff involved in EBCD also report major benefits from taking part in the process, including feeling reconnected with the fundamental values of care and compassion which originally prompted them to join the caring professions. As we know from the Francis Inquiry into events at Mid-Staffordshire Hospitals and the Winterbourne View Inquiry into residential care for people with learning disabilities, it is all too easy for staff to lose sight of these values when the culture of the organisation attaches low priority to user-centred practice. A key benefit of EBCD is that, unlike more punitive or inspectorial approaches to staff behaviour and attitudes, evaluations (see case for support) have shown it to have a galvanising and inspiring effect on staff; far from feeling threatened and defensive about complaints, staff report improved morale. Higher staff morale has in turn been shown to be linked with better user experience (see case for support).