A talk about patient involvement in research for Impact Frameworks and Cultural Change Conference from Derek C Stewart, a patient advocate in the UK and Hon Professor with NUI Galway, Ireland.
I want to reflect on the Cultural Changes that have taken place and what might happen next. The role of patient has changed from being wheeled out on a stage to be the exhibit to becoming more of a partner, colleague, critical friend.
The curtains of clinical research may have been thrown open offering light and learning but is it time for open the doors and go for a walk together.
Research in healthcare, over the past thirty years have seen a shift from the patient being seen merely as the research subject – someone to be revealed on a stage behind a curtain to a select audience, looked at, probed, questioned. We have become more of a partner, a colleague and essential part of improving the quality of research. The curtain, doors and windows in health research have been opened to allow light and learning.
The greater involvement of Patients and Public has brought fresh insights, new thinking and transparency. Patient, Public Involvement (PPI) developed from mental health service users, the HIV and AIDS communities, disability movements, cancer patients and many more. Each in their own way addressing social change, altering the dynamics of power, shifting democratic processes and challenging the status quo yet we spend too much of our time looking at an individual research protocol and participant leaflets.
Involving patients and the public is increasingly becoming a cornerstone of effective public policy, particularly in health and clinical research but has the culture changed?.
The Research Excellence Framework (the REF) and the focus on IMPACT – of reach and significance – have all helped in that journey.
I would argue that these have improved the quality of research – more relevant questions, more appropriate outcomes addressing qualitative experiences not just quantifiable, better and understandable participant information leaflets, better reporting of the evidence. More people are certainly taking part. There is greater interest in research becoming a standard part of the patient pathway.
Computers and smartphones have helped moved these changes at super speed and we need to think about how to make that step change in practice and culture that keeps up with digital technologies, artificial intelligence whilst essentially building and maintaining public trust.
As patient advocates, we spent years, learning about research, science, medicines and treatments as well as exploring different forms of Involvement in order to help. We assimilated – In many ways we became more like researchers. We made changes to individual research projects, to some researchers and have in many respects gradually shifted the culture. Some researchers get it, they understand that involvement improved the standard and quality of research yet there is a long way to go. If a key member of the research team leaves the involvement can disappear in days.
The challenge is to make research more mainstream – Covid-19 has helped. R numbers, phase 1 to 3 trials, vaccine reliability, efficacy, have become the language for news bulletins.
The Zoe Covid-19 Study https://covid.joinzoe.com has online consent, gathering data, informing the participants, scientists, policy makers, politicians. Sending reminders, adapting the study to meet changes and ask other questions. Dissemination has moved from a conference presentation with a select few into the public domain and the realm of public communication. Webinars are open.
But when I read research proposals – I still see phrase such as ‘I will disseminate the findings at a Conference of my peers‘ let alone inform the participants of the results which is becoming mandatory in the UK through the Health Research Authority Transparency Agenda
In the UK we have focused on Involvement – the theory, practices and the processes. Too often this has been more than the purpose to improve health treatments and care.
In Ireland the focus is on improving health. Where research is a means of improving people’s health, it has become a joint endeavour, a common interest. iHealthFacts sets out to invite questions from the public about their health conditions. This helps researchers understand the questions people have and seeks to help them find answers.
Local people are empowered to help which in turn enriches their communities – through the Community Scholars Programme.
Young people are enthused and encouraged to ask their own questions and become researchers running a study with the STARTinitiative.
Researchers have been helped think about how they engage with the media though mentorships organised by Evidence Synthesis Ireland with Muiris Houston of Irish Times
There are examples in the UK encouraging research to think differently. Genes and Health East London have 47000 people with a South Asian background signed to a genetics study. Manchester Biomedical Research Centre invites the public to be vocal about research.
These examples illustrate that there are not hard to reach groups – more about hard to move researchers from their ways, computers and desks. Without proper diversity we are in danger of measuring the wrong things and most likely failing to address health inequalities.
Cultural change has to be about us being in, around and with our local communities – listening and understanding their needs. It has to see a shift in attitude and behaviour – being open and accepting differing views and perspectives. We have to be able to see and touch those differences in the words, theories and practice – these are what will show that it is authentic change and demonstrate trustworthiness. The transparency of actions can illustrate joint ownership and a sense of belonging for us all. These are all vital as we are increasingly using data and artificial intelligence.
I would argue that we need to create more spaces for us to have these conversations, that such places are about the opportunity for mutual learning – we learn about your experiences of and you learn about our experiences, we gain from each other’s knowledge and develop our understanding of new skills and greater understanding.
It cannot be the impact of your research – it has to be more about the impact on people’s lives and that can be best done together. The step changes are about improving our understanding about our communities, empowering local people which in turn enriches their communities, enthusing and encouraging young people, engaging with all types of media and become better communicators.
My question is…What is the giant leap that needs to take place to make this happen?
iHealth Facts https://ihealthfacts.ie
Community Scholars programme https://www.nuigalway.ie/ppi/case-studies/cesp/
Evidence Synthesis Ireland mentor programme https://evidencesynthesisireland.ie/writing-for-communication-mentees/
Genes and Health East London http://www.genesandhealth.org