PURPOSE and PLANS
This is Part 3 in a series of posts about Patient Advisory Groups - You can read the others Part 1 and Part 2
The likelihood is that the researchers will come to the Patient Advisory Group with quite specific requests so it important to keep the group focussed on the task.
Patient Advisory Groups (PAG) that are effective, in my opinion, tend to have a very clear purpose and are resolute in achieving their goals. The explanation is very much in the title ‘advisory’ - to offer advice and give an opinion on the research and to the research team. For the most part these meetings are positive and productive. You will find that it is perfectly acceptable to disagree but it is helpful not to be disagreeable. It is useful to have some Terms of Reference and a Group Agreement.
You can click the highlighted words to find some sample Terms of Reference from the NIHR Involve website.
By Group Agreement, I mean a few points that the group feels are important to help it run smoothly - eg Respect for other people’s views, Confidentiality where appropriate, Time keeping, etc. Once agreed it is easier for everyone to keep the meeting on track.
At best, these Groups are formed at the very earliest stage of planning the research and have time to shape the research question, the ideas and thinking. In this way the group can provide useful insight about the concept of the research, the approach being taken and the writing of any proposal and grant application.
The reality is that so much work goes into getting the research designed, agreed, approved, funded that the Advisory Group may be a later addition. Simply start from where you start. The difficulty for the researchers is that getting all this done is often on top of a day job. Once set up, even in the later stages of a study, you can be around to advise on the next study coming along and be there at the very earliest point.
You will simply be where you are and you need to get up an running as quick as possible. Life doesn’t run smoothly as we know from our own personal experiences.
It can be helpful to look at various moments in the research study where advice from the PAG could add value, eg: suggestions about recruitment and communicating information about the trial; when some initial data is being collected and perhaps showing some results; later when the trial might be struggling to get the last few participants. You might also want to look at definitive tasks eg: reviewing the Lay Summary or the Patient Information Leaflets.
The clearer you are about the task, the more likely you are to know if you have made a difference. It is easier to capture the 'before' and 'after' information - eg Here is the leaflet before I asked the Advisory Group.
We have loads of questions to begin with that move from the most basis of ‘What is health research?” to ‘What type of research is it?’. These questions get sharper as we develop and I have found Bloom’s Taxonomy of Asking Thinking Questions a useful guide to help reflect and consider our effectiveness.
You may therefore want to think about how the meeting is shaped to include time to 'advise', to 'understand' and to 'learn'. It is the last two that I have found most rewarding. I have learnt more about my illness, the treatments, the research and about my own health and wellbeing.
Some groups don't actually meet in person for a variety of reasons (geography, cross infection, time, etc.) They can be just as effective but it is good to spend more time at beginning getting to know each other (a short personal written statement about what you want the Group to achieve can help)
The NIHR INVOLVE Standards
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 Impact (and Working Together) - if you aren’t precise about the task then it will be nearly impossible to measure progress or impact.
My NEXT BLOG POST in this series about Patient Advisory Groups will look at DEVELOPING PEOPLE which I will place into the Standard about Learning & Developing