[Aside] Though this be madness, yet there is method in’t.
Hamlet Act 2, scene 2, 193–206
If you are in some way connected to public involvement in health research then you get used to ‘the look.’
Sometimes it’s a vacant stare or a gaze falling slowly across the face like the sun going down. In other instances it’s a look of panic or sheer terror. ‘Are you mad?’ you can see them think. Then, ‘No, they’re serious and my world is about to be turned upside down.’ This, as they shift their weight from foot to foot.
Demonstrating the logic and rationale behind our passion is key to influencing these panic-stricken colleagues who have stumbled across our world for the first time. Identifying methods and methodology that will not just work for them but make research better and their lives easier is key. Refinement of this thinking and in ways that can be easily assimilated is one of the three grand challenges for public involvement.
It is my personal opinion that we are not doing nearly enough across the NIHR to learn from current public involvement practices, develop appropriate methods and methodology and then serve these up in a way which can be used easily by our friends colleagues. INVOLVE has done some fabulous work in this area not least through its invoNET programme of work and its evidence library. But others need to begin to demonstrate that they will be taking this agenda seriously if we are not to build public involvement on foundations of sand. Across the water, in Canada
The Health Services and Delivery Research Programme is currently on the hunt for future research topics (deadline, 4th December) and this may well be one route to boost efforts. In the meantime there are some studies underway which I hope people will support.
To this end, I am passing on this invitation to take part in the Medical Research Council (MRC) -funded METHODICAL study – initially, a two-round survey to help agree which methods, practices and procedures of patient and public involvement (PPI) in clinical trials should be prioritised for future research…
The notice I received says..
We are looking for people with at least 12 months experience of PPI in clinical trials within any of the following roles:
- PPI Researchers (e.g. those who conduct research into PPI in clinical trials and authors of guidance documents)
- Non-lay Reviewers of trials (e.g. professional members of clinical trial funding boards /Research ethics committees)
- Lay Reviewers (e.g. members of the public sitting on clinical trial funding boards/ Research ethics committees)
- PPI Advisors across trials (e.g. member of Research Design Service (RDS) advising others on PPI activity, PPI advisors from funding bodies)
- PPI Contributors (e.g. patient representatives, research partners in clinical trials)
- PPI Co-ordinators (e.g. working for a Clinical Trial Unit (CTU) or research network to coordinate PPI activity)
- Chief Investigators, trial managers and other researchers/staff who plan/oversee PPI in trials
Each round of the online survey will take about 15-20 minutes. Round one involves scoring the importance of a list of research topics on a scale of 1-9. About two months later you will be invited to complete round two, where you will be asked to review a summary of the survey responses and given the option to change or keep your original scores.
This type of survey is called a Delphi, and is a way of finding agreement amongst a group of people. To ensure the results are accurate it is important that as many people as possible complete both rounds of the survey.
Round one will be available to complete until Friday 11th December.
Some people who complete the two-round survey will be invited to a meeting in Liverpool, at which the results will be presented and discussed to achieve a final agreement of the research priorities. You do not need to be willing to attend this in order to complete the online survey.
More detailed information about the study is available in the attached document.
The survey can be accessed from www.methodicalstudy.uk
We would appreciate your help with the study. Also, if you think there are any persons or networks that this might be relevant to we would appreciate your help with the dissemination of this email.