NHS Patient Participation

[smudger1]

Received my 1st email containing the In Touch Bulletin, worth signing up to this, lots of requests for people to participate in various surveys, public voice comments and more. Am keeping an eye out for anything re thyroid or the cessation of certain medicines etc

[MMaud]

Another place that is absolutely a goldmine of information is the NIHR, here:

nihr.ac.uk/nihr-in-your-are...

I am involved with my local NIHR Biomedical Research Unit. There is some amazing stuff going on, and there is a fantastic database of recent research, ongoing research projects and trials recruiting participants.

In my area, we have an individual who is responsible for liaising with lay volunteers and those interested in attending focus groups and advocating for the patient side of things. It's a great way to become involved, and meet some very interesting people too.

The related UK Clinical Trials Database is also very interesting, both as an insight into trials activity for conditions in which we may have an interest, and/or considering participation in clinical trials. Not all clinical trials involve taking non-approved medical. Some are as simple as monitoring trialists day to day activity levels by wearing a FitBit or the like.