Conflict as Lesson: Learning from PPIE in DACHA Study
Anne Killett, Kerry Micklewright, Julienne Meyer, Liz Jones, Pamela Blades, John Willmott
Interested in Patient and Public Involvement and Engagement (PPIE) in research? Then this blog post is for you, as it shares lessons learnt from the DACHA study. The on-going NIHR-funded DACHA study (http://dachastudy.com/) seeks to explore and enhance how resident quality of life and care data are more systematically shared between the multiple health and social care organisations working with care homes, for mutual benefit. We wanted to listen to the voices of care home residents, relatives and staff to inform the development of this 4-year study, which began October 2019, so that the findings would be useful not only to the funder, policy makers and the researchers, but also, to people living, dying, visiting, and working in care homes. This blog shares some of the tensions that have surfaced over time and reflects on what we have done well and what more could have been done to ensure the best possible outcomes.
The project was designed with strong PPIE written into the proposal, which was positively endorsed by the funder (the National Institute for Health Research). The PPIE team were all Co-Investigators in the project and included not only researchers, but also people with lived experience of using and providing services. Their work together was key to driving PPIE activities in each work package of this complex project. We quickly realised how easy it would be for each work package to ‘sail-off’ in different directions and PPIE became the rudder to guide the ship. We all had different ideas on what we were trying to do; but explaining in plain English to each other helped to get some shared understanding across the different academic disciplines. A PPIE handbook, including a glossary of terms, helped new researchers familiarise themselves with the project and think more about how they communicated with each other and the outside world.
However, the close involvement of people with lived experience in the core team also generated some challenges. Researchers found it hard to describe what they were doing in a language that was accessible to those in practice and were juggling numerous conflicting work priorities. Those with lived experience found the slow pace and narrow research focus hard to accommodate. They wanted the lessons learnt from their experience implemented in practice and their passion for change resulted in action plans and changes in team membership. However challenging, these changes actually strengthened the project. We were all held to account and asked to question what we were doing on a regular and immediate basis by the PPIE team, and that was before we had put any other PPIE structures in place. Some tensions were resolved, but others were not. One member began as the lay representative on the Project Steering Group, moved to become a core PPIE team member and later transferred to the PPIE Panel in order that their voice could have more influence. Another left early in the project through frustration with slow pace. Their legacy was a more receptive culture for challenge.
It was helpful to have a care provider representative from National Care Forum (https://www.nationalcareforum.org.uk/ ) on the PPIE core team as they had a real understanding of the ever-changing context of care homes, especially during COVID-19. In addition, they not only had insight into the needs of care home providers, but also, could share what they knew their customers (residents and relatives) wanted from health and social care. They were more used to working with researchers and policy makers and tolerated better its measured pace and could sense check what researchers planned to do, even if they couldn’t give the same level of in-depth insight as an individual service user or provider working in practice. This had to come from additional PPIE structures and activities.
At the beginning of the project, PPIE feedback suggested that residents did not want to be seen as ‘patients’ and it was suggested that ‘providers’ should also be included in the title of PPIE. They suggested ‘Personal, Public and Provider Involvement and Engagement’ (PPPIE) might be a better way of describing their involvement. However, over-turning commonly held language in the academic community can be a contentious and thorny issue, with many people disagreeing.
We quickly established agreed ways of working for the PPIE team, meeting on a monthly basis via Zoom and being in interim contact via email. PPIE documents are easily accessible to the rest of the DACHA research team through a shared drive for the project. Our role was to input on all PPIE activities, providing support and challenge to the rest of the DACHA research team and we tried to strengthen this by regularly reflecting on our activities in relation to the UK Standards for Better Public Involvement (https://sites.google.com/nihr.ac.uk/pi-standards/home).
Above: some of the core PPIE activities completed as part of the DACHA study.
A PPIE Panel was formed early on to listen to the voices of relatives and care home staff on a tri-monthly basis throughout the project. Whilst we would have preferred to meet face to face, this was not possible due to COVID-19 restrictions, so sessions were conducted via Zoom. This created some initial technical challenges, which were generally overcome quite quickly. Methods were put in place, using icebreaker exercises, to help participants connect more with each other as people and help everyone feel more comfortable speaking. The agenda was sent out in advance and notes circulated afterwards. Presentations on work packages were sense checked by the PPIE team in advance of the meeting and, where possible, small group discussions took place ‘break-out’ rooms and participants were encouraged to use the ‘chat’ facility or to send follow-up emails if there was anything else that they wanted to share. At the close of each meeting, participants were invited to share a ‘take-home’ message from the meeting – something they had learnt, something they wanted to think about more, or something they wished to leave behind. This gave everyone a sense of how the meeting had gone and helped them to leave on a positive note. That said, whilst most people liked the ways of working, others felt the time would have been better spent on more discussion of the topic under scrutiny. Ideally, some panel members would have liked more opportunity to discuss issues in more detail with the PPIE team on a one-to-one basis and whilst this was occasionally offered, this time was not funded within the project and might set an unrealistic and unfair precedent. We continue these meetings via Zoom as participants feel better able to attend, as this is less pressing on their time. However, we are mindful that some people still do not feel that they are heard as well as they would like and wish that the agenda for our two-hour meetings was less packed. It feels hard to shorten the agenda for a project that is so complex. It is also hard to keep to time as we want to be as open and responsive as we can. There is a balance to be had, especially when in meetings the discussion goes off track from the topic and we have to pull it back due to time constraints. We try to send the agenda out in advance of the meeting, with written material outlining what will be discussed, but not everyone has chance to read this material in advance. Participants suggest they find it helpful when feedback on the work packages is shared in the manner of “You said, We did”, as it is not always easy to assess impact being made.
Our biggest struggle was accessing the direct voice of residents, especially during the pandemic when care homes were closed to external visitors. We tried to solve this by collaborating with the National Activity Providers’ Association (https://napa-activities.co.uk/) as a PPIE partner. This is still being evaluated but is showing some promising results. DACHA researchers are working with activity providers in three care homes to access the voices of their residents, using bi-monthly one-to-one or group discussions that are facilitated by the activity providers. Working with members of the PPIE team, the activity providers are co-creating resources to help stimulate discussion with residents on research topics specific to the work packages. The benefit of working through activity providers relates to the fact that they understand their residents well, can make discussion into a meaningful activity, know how and when to best approach residents (especially those with dementia), and are in a better of position of trust and positive relationship compared with an external researcher. Feedback to date suggests there are other benefits – care homes welcome the opportunity to talk with residents and relatives as this informs their practice development and residents and relatives feel that they are contributing something useful for others by sharing their voice. This helps them feel a better sense of purpose, achievement, and significance.
Above: DACHA collaborates with NAPA to enable residents to contribute their thoughts and shape DACHA’s work. To the right is an example of an activity pack developed with the help of activity providers, while the slide is from a presentation kindly created by an activity provider (Michael Butler, Summerdyne Nursing Home) to share his findings with the PPIE team.
Another struggle was being able to give the time needed to understand better what lay people were wanting to share in the Advisory Group, PPIE team and PPIE Panel meetings. We must recognise that people have a personal interest in participating in PPIE activities. They bring a wealth of personal experience and want to share what matters to them. This may (or may not) be directly relevant to the focus of the study. Sometimes points are dismissed too quickly, when further ‘unpacking’ would benefit all.
Other PPIE activities include national and regional stakeholder consultation meetings with representatives of the wider health and social care system to inform the work. These are especially useful given that, since the advent of the project, the Government has announced its intention to introduce a minimum data set (MDS) for care homes by 2023 due to the lack of comparative care home data discovered in the COVID-19 pandemic. It has become vitally important that the emergent lessons learnt from the project inform on-going developments in practice. The speed of MDS implementation is fast and DACHA researchers are working hard to share what they know from their realist review of the research literature, along with the lessons learnt from those with lived experience and the findings from their pilot work in practice.
Something we feel could have been done better is the way we have tried to involve and engage others through social media. We are trying to reach out to other members of the public through our DACHA Facebook page (https://www.facebook.com/groups/815247412695551), Twitter feed (@DACHA_Study) and various outputs shared on the webpage (http://dachastudy.com/dacha-outputs/). On reflection, it would have been better to cost in a media expert into the project proposal, as none of us really had the expertise needed to do the job well.
PPIE is potentially sensitive in nature due to the invested personal and professional interests of the people involved. This needs to be recognised and conflicts openly discussed. We believe some of the best learning comes from these tensions and hope that by sharing some of the lessons learnt in the DACHA study that other researchers will benefit from knowing more about what we think worked well in our PPIE activities and what more could have been done to make it even better.
Funding Acknowledgement and Disclaimer
This study/project is funded by the National Institute for Health and Care Research (NIHR) Health Service Research and Delivery programme (HS&DR NIHR127234) and supported by the NIHR Applied Research Collaboration (ARC) East of England.
The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.