From STORY to REFLECTION (Standard: Inclusion)
There is a big difference between using our experience and the retelling of the events in chronological detail. There is an even larger gulf between only hearing the voices of a select few and understanding the needs of others, especially those whose voices are seldom heard.
My cancer was like a fulcrum in my life. What had seemed an ordinary path suddenly altered pace, sense and direction. I would be asked to speak at conferences and meet with NHS staff. I chose to select certain moments for praise and made a few suggestions for improvements rather than just telling my story or being critical. This approach seemed to be appreciated and often led to an invite to attend another meeting, group, workshop, committee… (How many of us recognise that simple pattern and realise the unexpected journey we have taken?). I also became fascinated by the scale of challenge faced by the NHS and for research.
The fulcrum’s turn also helped me shift from my patient experience to actively using the events as a means for change. It is the moment, if you like, that we stand and take stock. It is the time that we begin to reflect…from ‘what if?’ to ‘what can we do?’. It is as you realise that many people don’t get the opportunity to have their say - to influence, prioritise and shape research. It carries with it a responsibility to reflect the needs of others and an action to do something about it.
However, it is still very necessary for people to have an opportunity to explain the circumstances that brought them to the table. This can be done in a variety of ways through pre-meetings, a 1:1 with the chair of the group or inviting a different person to spend 5 minutes at the beginning of a meeting on a selected part of their journey (eg diagnosis or treatment). Equally, this can be done in pairs. These brief opportunities can be especially valuable if related to later items on an agenda as it provides safe space to think and talk before speaking out in a group setting. For example if the researcher is looking at a genetic test then asking members of group if genetic testing was ever mentioned and if so what was said.
The point of this is to make sure that the focus is on being an Advisory Group. (This is different from a Support Group yet often the best support I have seen is amongst members of an Advisory Group)
We are there to advise, to offer opinion to help the research team to develop the actual research (eg: the research topic, question, inclusion measures, etc., etc). We might also make suggestions about how to involve patients and the public at different stages of the research (eg: discussion groups about outcome measures, people to review the Patient Information Leaflets, etc.).
In my experience, we tend to do both - be the advisors and the practical helpers. There is nothing wrong but I do wonder whether this requires more thought and clearer separation.
This type of reflection can be a useful discussion point to visit at meetings. They also move people from their personal experience to be able to consider other people’s views especially those who maybe can’t attend such meetings. This reflection on the needs of others, about people they have met along the way and those they didn’t come across. It is one of the difficulties is that the stories we tend to hear are from people who are able to attend such meetings. We tend to be of a certain age, background and culture with the availability of time.
It is vital that all Advisory Groups address equality and diversity. Part of that is advising the research team how they might engage with certain groups, communities and cultures.
The Group may also want to consider holding some of their meetings in the community and at different times of the day and week. Only last week I joined a researcher to talk with a group of Mums who meet regularly at a community centre. The atmosphere was much more relaxed and friendly. It was less about us entering a research world and more about bringing research into normal life.
We must always remember that research should be carried out with the people who should benefit so it vital that the research reaches out in this manner. This is especially important if we are to effectively address health inequalities and matters that are relevant to patients.
You may finally want to regularly review the membership to ensure there new people come along whilst others as they move on can become supporters and advocates.
The issues raised in this series can be looked at in the light of the Public Involvement 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 Inclusion. It is through ‘reflection’ we may wish to look around the room and consider how our group matches the age, background, culture of those who have the condition. We should reflect on the others we met in clinics and consultations and ask whose voices are missing?
It is also about people feeling welcomed to the Group, whether they are included in the discussion and contributions are valued.
My NEXT BLOG POST in this series about Patient Advisory Groups will look at PURPOSE & PLANS which I falls into the Standard about IMPACT