Patient Advisory Groups for Research Studies - some random thoughts over a few blog posts
A few weeks ago I was asked about 'how to set up and run a Patient Advisory Group'. The question came from someone who had been asked to chair a Group who had tried looking for something more than Terms of Reference.
REQUEST: So, other active patient involvers*: Do you have any good stories, posters, reports?
The questions I am exploring in this series are:
- What are Patient Advisory Groups?
- How do they work best?
- What might be helpful to know?
And...How might these match with the NIHR INVOLVE Standards for Public Involvement?
THE EXPERTISE of EXPERIENCE (Standard: Working Together)
I think the first thing to note is that it is often because of our personal experiences, we become members of a Patient Advisory Group.
We attend to offer insights that are rooted in that experience. We may have similar conditions and the same treatments yet our journeys are often quite personal and unique. This is valuable and useful knowledge that is helpful for researchers.
Our role is to bring that different perspective -a new pair of eyes to an issue. We are present to ask a question, shake a stick, gently puncture an opinion, challenge an attitude and occasionally declare that the Emperor has no clothes.
Most of the time our experience and knowledge helps ground the research in real life, adding a pinch of common sense. Our voices and presence provide different insights for a study that might not have been considered, thought relevant or seen as a priority.
I had no knowledge of science, medicine or research when I began and I am not sure whether I know that much more now. I have, however, found that usually helps members of the Group to have some interest and curiosity about research, treatments and science with a willingness to learn. Ultimately, though, it is our experience that matters most. This is our ‘Specialist Knowledge’ section.
As Dame Sally Davies, the Chief Medical Officer says, “No matter how complicated the science, or how brilliant the researcher, patients and the public always offer unique, invaluable insights.”
The other people in the research team bring the expertise in science, treatments and research. They often come with such extensive knowledge that they welcome the opportunity to try to make their work more understandable and accessible to the public.
When we, as patients, first get involved it all seems a bit strange. I liken it to spending a few days in another country such as France or Spain. Certain things are familiar but others are different. I’m okay reading something slowly but speaking seems almost impossible. I use a few useful phrases, understand a little bit of the culture and then realise that there is a lot to more to learn from each other’s history, people and customs. Over time we start to have a greater understanding of each other.
One of the challenges is that the Group can become the only source of the ‘advice’ and that risks it being insular and potentially exclusive. It can be really valuable to work with local support and self-help groups, to encourage the researchers to visit out-patient and other clinics to get that current and immediate reality check. It can be helpful to target specific communities where the risk of the condition is higher. These contacts can also help develop a broader network with whom you can communicate especially about progress and the results.
The issues raised in this series can be looked at in the light of the NIHR INVOLVE Standards which are aimed at helping us develop our thinking, understanding and practice about public involvement.
I think the issues in this post fall mainly under the standard about Working Together.
As we explore this Standard, we may want to reflect on the relationship, the levelness of the playing field and the mutual benefits of this joint endeavour.
I encourage Groups to capture the narrative about what what Working Together means: a) for the research, b) for the patients, c) for the researchers. This will prove more useful than counting the meetings we held and the numbers who attended. A good example might an article from local media coverage mentioning the involvement and the research: https://www.nottinghampost.com/news/health/nottingham-lead-fight-against-breast-1381253
I would also ask people to think about what made it work and how you overcame any barriers you faced. Finally, what mistakes do you make and what did you learn most?
* @RheumPatient has just kindly suggested this excellent paper https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12478#support-information-section
My NEXT BLOG POST will look at From Story to Reflection - as part of being inclusive