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

Lead Research Organisation: University of Oxford
Department Name: Primary Care Health Sciences

Abstract

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

Planned Impact

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).

Publications

10 25 50
 
Description Consistent with other findings, what matters most to people experiencing healthcare is often less about major organisational issues or service delivery models, and more about relationships, staff attitudes and acts of kindness. This holds true across a range of demographics and different conditions, including physical and mental health. In addition, people from black and minority ethnic backgrounds experiencing mental health problems report that cultural awareness and language remain important issues.

We set out to explore secondary analysis of two different types of data to inform health and social care service improvement: summarised research findings and video extracts from the Healthtalk health experiences website versus full interview transcripts. We wanted to use the results to create new 'trigger films' for use local experience-based co-design projects. We found that using the summarised findings was sufficient to create new trigger films covering key themes in the data, without the need for re-analysing full transcripts - minimising the cost of further trigger film production.

We also worked with service users to see how they could best be involved in creating these trigger films. We found users identified very similar themes in the data to researchers but that they found it easier to relate to analyse summarised findings than working with full interview transcripts. They recommend a model where they identify key themes to guide the researcher, and provide feedback at the trigger film's draft production stage. They felt this was better use of their time and expertise than engaging with interview transcripts.

The main challenges for improving user and staff experiences are to secure clinical and non-clinical leaders and frontline staff's commitment to concrete action to improve care. Trigger films encourage them to work with service users to design and implement improvements to local services.
Exploitation Route A key aim of our study was to produce re-usable materials which could be of lasting benefit to health and social care organisations (see URL above). We worked closely with our co-investigator from NHS England (Neil Churchill, Director of Patient Experience) to develop films on topics reflecting current concerns for health and social care. We have held two free dissemination workshops attended by approximately 60 frontline practitioners and managers, with another planned for october funded by NHS England as part of their ongoing commitment to raising awareness of Experience-based co-design. We will continue to promote the resources by attending seminars and conferences, and through the national online EBCD toolkit hosted by the King's Fund.
Sectors Healthcare,Other

URL http://www.healthtalk.org/peoples-experiences/improving-health-care/trigger-films-service-improvement/topics
 
Description Findings from the secondary analysis informed the development of new resources for NHS patient-centred quality improvement using experience-based co-design methods. These resources take the form of trigger films hosted on the publicly accessible healthtalk website http://www.healthtalk.org/peoples-experiences/improving-health-care/trigger-films-service-improvement/topics . NHS England was involved in selecting the topics to match NHS strategic priorities, and is actively disseminating to NHS commissioners and providers. We held three dissemination workshops with NHS commissioners and providers in partnership with NHS England and the Point of Care Foundation, two in London and one in Leeds. At these workshops we showcased the materials and explained how they could be used as part of a quality improvement process (Accelerated Experience-Based Co-Design, or AEBCD). Events were attended by a wide variety of personnel including service commissioners, patient experience managers, and medical, nursing and social care practitioners. Feedback was strongly positive; for example at the Point of Care Foundation workshop, 100% of delegates thought the event was good or excellent, with more than 70% describing it as excellent. 100% thought both the content and delivery of all the sessions was good or excellent. Attendees indicated intentions to view the new online resources,and to potentially initiate utilising the AEBCD process locally, and to hold future events to raise awareness within their own healthcare settings and specialities. Narrative feedback from the NHS England events included: "(We will) look in detail at the EBCD toolkit and health talk interviews and videos to establish if EBCD can be used to increase the experience of carers with the trust - superb event thank you." "(I will)talk about the model with colleagues and trusts im working with." ".[plan to] access the healthtalk website and tools on kings fund website to start to develop a 'pitch' in the trust for EBCD to be considered/ implemented - working jointly with carer & PPI leads" The PI continues to be actively involved in demonstrating AEBCD and wider use of patient experience data for service improvement to academic and practitioner audiences. Our exploratory work on involving service users in the secondary analysis and the creation of films found that users and researchers identified similar themes or 'touchpoints' between user and service in the data. Involving them in full transcript analysis was possible but time-consuming, and not necessarily a good use of their time and expertise. From this experience we have evolved a different approach which we have used successfully in a subsequent study funded by the National Institute for Health Research (HSDR 14/156/06), looking at the experiences of general medical ward inpatients. In this approach, we began with a user workshop with 10 people who had recent personal or family experience of an inpatient stay. Participants were invited to share their reflections on key touchpoints from their own experience and from what they had observed going on aound them during their hospital stay. We recorded and grouped the touchpoints they suggested, and used this as a guide for the researcher in identifying relevant material for the trigger film. We took a draft of the film back to the same group to check it reflected the themes they felt were important to raise. The film was made available to hospitals taking part in the study, and users presented an extract to project teams from each site at the first whole-study meeting in July 2016. The full list of touchpoint themes underpinning the film was also made available to participating sites. The film is publicly available on the healthtalk website alongside other trigger films.
First Year Of Impact 2015
Sector Electronics,Healthcare,Other
Impact Types Policy & public services

 
Description Teaching on new 'Foundations in Patient Experience' training course
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Initial training cohort of 20 NHS patient experience officers, exposed to new ideas about what kinds of patient experience data they can use for NHS quality improvement and how. They will take this learning back to their organisations and share with colleagues. The course is run by the Point of Care Foundation.
 
Description NIHR HS&DR call on using patient experience data for improvement
Amount £800,000 (GBP)
Funding ID 14/156/06 
Organisation National Institute for Health Research 
Department Health Services and Delivery Research (HS&DR) Programme
Sector Charity/Non Profit
Country United Kingdom
Start 11/2015 
End 01/2018
 
Description Conference presentation at HSRUK Symposium 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact "Involving service users in the secondary analysis of patient experience interviews from a national archive in order to support local service improvement" Oral presentation to disseminate findings in relation to involving service users in data analysis. An opportunity to provide audience with links to the new films developed as part of this study, and to widen awareness and understanding about EBCD process.
Year(s) Of Engagement Activity 2016
 
Description Half day Seminar showcase - Using film to co-design mental health services 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Invited workshop on using film to co-design mental health services using an existing national archive of patient experience filmed interviews, and involving service users in analysing data to produce new trigger films. As well as showcasing the mental health related trigger films that were produced as part of this study, the event provided an opportunity to showcase the full range of films we developed. It was attended by a range of professionals including commissioners, royal colleges, practitioners, and health service researchers. Workshop discussions initiated positive responses from attendees. 100% of delegates thought both the content and delivery of all the sessions was good or excellent. Feedback comments indicated a high level of interest from delegates
• It was very informative, I have some ideas that I could take back to where I work
• I would be interested in seeing how EBCD is applied to youth offending teams with mental health services - CAHMS
• Useful to hear from variety of speakers with different backgrounds
• Wonderful overview, thanks
• I am glad I took the opportunity. I wasn't sure what I was going to get - but I know it's worth spending more time and effort. Networking opportunities are definitely worth developing
• Very interesting and great to have time to mingle
• Good balance of presentations and discussion
Year(s) Of Engagement Activity 2016
 
Description Half day Seminar showcase 2 - Using film to co-design mental health services 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact A half day seminar to showcase new trigger films developed as part of this study, and to raise awareness about EBCD. Attended by a wide range of professionals including commissioning groups, NHS trust managers, practitioners, service user researchers and royal colleges. Positive responses and feedback from attendees indicated a strong interest in utilising the new trigger film collection, and in the potential for involving service users in improvement activities
Year(s) Of Engagement Activity 2016
 
Description Half day seminar showcase 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact A half day seminar to showcase new trigger films developed as part of ESRC study, and to raise awareness about accelerated EBCD, hosted by NHS England at their Leeds headquarters. Attended by a wide range of professionals including commissioning groups, NHS trust managers, practitioners, service user researchers and royal colleges. Positive responses and feedback from attendees indicated a strong interest in utilising the new trigger film collection, and in the potential for involving service users in improvement activities
Year(s) Of Engagement Activity 2016
 
Description Patient experience conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Discussion of how we can involve service users in qualitative data analysis

none
Year(s) Of Engagement Activity 2015
 
Description Presentation at local NHS quality improvement event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presentation to an invited audience at a quality improvement event organised by Royal Berkshire NHS Foundation Trust, explaining current policy and evidence on using patient experience data for quality improvement and alerting participants to resources available for experience-based co-design based on secondary qualitative data analysis.
http://www.healthtalk.org/peoples-experiences/improving-health-care/trigger-films-service-improvement
The specific focus of the event was improving patient experience in the emergency department.
Following the event, two senior managers in the trust reported feeling differently about the importance of using narratives for service improvement, and moving beyond measuring patient experience to acting on the findings. A nursing professional in the audience commented during discussion that seeing patients talking about their experiences was motivating and 'refilled my bucket of compassion'. A family member who had been involved in the local project approached me with a view to getting involved as a carer representative in a new national study of how frontline staff make use of patient experience data for improvement,
Year(s) Of Engagement Activity 2016
 
Description presentation at humanities research centre seminar on narratives and healing 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Part of wider discussion of how we can use narratives for applied purposes

none
Year(s) Of Engagement Activity 2015