According to the rhetoric, Patient and Public Involvement and Engagement (PPIE) is meant to be the cornerstone of health and social care research and rightly so, but this was not always the case. Those at the end of their careers will remember a time when professionals were seen as the dominant expert and the voice of service users were muted. Indeed, Julienne’s PhD on ‘Lay participation in care in a hospital setting: an action research study”, which gathered data in the late 1980s found health professionals (doctors, nurses, allied health professionals) had serious doubts and actively inhibited involvement and engagement in practice, never mind research. Patient and public involvement and engagement created tensions due to a dual historical legacy. On the one hand involvement of people in their care was positively seen as a civil right (humanistic legacy) and on the other hand involvement of non-professionals was feared as being a cost saving exercise (bureaucratic legacy). At the time, health professionals felt conflicted and the PhD called for greater transparency of the underpinning conceptual reasons for its implementation. Without this, it was felt that involvement would remain tokenistic. Whilst things have moved on in practice, perhaps there is still a need to revisit this concept in the context of research?
For a long time, ‘people’ using health and social care services have been saying that they do not want to be viewed as ‘patients’. Language matters as what we say often reflects what we feel and what we do. So why do we continue to use this term in research? Placing people in a medicalised box, especially when we now know how important it is to recognise individual needs and work within the social context of care. For some, at this stage of life quality of life is more important than quality of care. We would argue that researchers need to think more deeply about this concept both in terms of how it is articulated and operationalised. In the DACHA study, we have encountered some interesting tensions within the team, which we honestly and openly share to widen the debate on what should or should not be done in the name of PPIE (for want a better title). First, in the context of care homes, ‘patients’ is not an appropriate term. They are places where people collectively live and can sometimes struggle to be seen as individuals. As researchers, we need to value and respect the views of older people, as well as those of working age, in care homes and advocate for change. Just because the term is natural parlance for funders, does not mean we should unquestionably adopt the term. Funders want to get it right by those they serve and are more likely to listen than not.
COVID-19 has thrown into sharp relief many of the systemic issues that were already known about in social care. No one can deny that the context of care homeswhich is the focus of the DACHA Study has been poorly understood (PHE continued to produce guidance for the NHS, not suited for the complexity of care homes, a lack of respect and valuing of social care staff demonstrated (early clapping for NHS staff and reluctance by Ministers to wear the CARE badge), and lack of partnership working (nationally social care not immediately represented on SAGE and locally an abandonment of care homes by local health services at a time of real crisis). The same is true in the context of research. It is only relatively recently that NIHR have started to fund research in care homes. Their focus has been much more on the NHS and saving money, rather than quality of life in care homes. However, this has rightly changed and NIHR are to be commended for recognising that doing research in care homes is different and for funding a Methods Review for Care Homes, which would help researchers (experienced and inexperienced) new to care homes avoid some of the ‘elephant traps’.
So, what have been the main ‘elephant traps’ in the context of the DACHA Study to date; apart from misuse of the word ‘patients’? The NIHR-funded DACHA project is a four-year study led by Professor Claire Goodman at the University of Hertfordshire. The aim is to explore and enhance how resident quality of life and care data are shared between health and social care organisations working with care homes, in a way that benefits all. However, innovation in digital technology in care is being developed at a pace in practice and researchers need to keep ahead of the game. So, what are our ‘top tips’ on this?
It has been helpful that our PPIE (would prefer PPPIE i.e. People, Provider, and Public Involvement and Engagement) has included grass roots care home staff, as well as, older people and their relatives. However, the involvement of National Care Forum (NCF – represents not-for-profit care homes) as a national representative organisation for providers has been essential. Each week they listen to the voices of their members who are well able to represent not only what is going on in practice, but also, the voices of the people (residents and relatives) they serve. Their job as a national representative body is to keep ahead of the game, gather cutting edge thinking from the frontline, and influence Government on issues of concern for their members. In the DACHA Study, we have created opportunities for the whole of the research team to be updated by National Care Forum on digital innovation in care, so that they can question the need for potential and nuanced change in each of the workstreams in the original proposal. Keeping closely in touch with innovation in practice is vital. Professor Goodman previously demonstrated this well in the Optimal Study, which connected with the Vanguard work allowing each to influence the other for mutual benefit.
We are encouraging DACHA researchers to discuss with the PPIE team beforehand what they would like to explore with older people, relatives and staff. The Alzheimer’s Society representative for older people and relatives and the NCF representative for providers should be able to draw on their previous experience of practice to ensure that the questions asked in the name of PPIE are more focussed and tailored. Without this preparatory input, could place themselves at risk of not understanding the real world of practice and being viewed as ‘out of touch’. We are now working on how we can develop a protocol for how these PPIE meetings are run; so that they are more relational and engaging, allowing for more dialogue from the people being consulted.
In the DACHA Study, we have been encouraged to be reflective and now our Research Management Meetings have a regular slot for the team to update and discuss with each other what is happening in practice. Fortunately, some of the work package leads hold important roles in locally and nationally in practice and this has helped enormously. In the context of our project, we take time out to reflect on:
- the range of technology currently in play to help to improve the quality of care and the potential this has to help us with data and a minimum data set
- how that data can be used to improve quality of care and the way that it can benefit researchers too
- how the Dacha study can resolve the issue of a minimum data set and why people should pay attention to it
Finally, another way in which NCF has been able to help was when the PPIE Panel suggested that a particular tool identified by researchers as no longer in use and was seen as out of date. Given the size of the PPIE Panel this may (or may not) have been the case. NCF was able to do two things. First, they consulted their members about its use quickly at their next routine meeting and, secondly, they asked a software company to extract data on the use of this tool from their digital care planning platform to helpfully confirm it was still being used. Without a national representative to check the issues raised by the PPIE Panel at a more collective level, the research team may have been misguided.
So, watching out for ‘elephant traps’ by closer partnership working with a national provider representative body has not only helped narrow the theory practice gap, but arguably made the research more relevant and the research team more knowledgeable about care homes.
DACHA PPIE Team
University of East Anglia: Dr Anne Killett , Priti Biswas
National Care Home Forum: Professor Julienne Meyer, Liz Jones
PPIE Representative/Alzheimer Society Research Network Volunteer: Sue Fortescue
PPIE Representative on Study Steering Committee ; John Willmott (carer with experience of totally disabled wife, care homes and dying).
The DACHA study is funded by the National Institute for Health 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 and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR, NIHR, NHS or the Department of Health and Social Care.