I have worked as a patient involved in research for over 15 years now. I have been involved in clinical/medical research at just about every level possible locally, nationally and internationally. I like to think I have helped things change and the responses I have had from the professionals would seem to confirm that.
It was interesting to find out about the development of a Patient and Public Involvement Standards process being developed by NIHR (the National Institute for Health Research) and INVOLVE, the national organisation for promoting involvement in research. There is an on-line questionnaire and a website. The objective is to provide guidance to organisations setting up a patient involvement process.
In all good faith I downloaded the documents and began to read. Dull, dull, dull. I have completed the on-line survey but there is so much more to be said, so much that was missing.
It should sparkle with ambition. It doesn’t. In my experience there is always a danger of a standards process becoming pedestrian. This one is mechanistic and will create a bland environment where achieving the minimum standard is the highest ambition. It will open the way for tick-box micro-management of daily involvement activity and no-one will ever address the question “why are we doing this?”.
Patient and public involvement is about transformation. I know this is ambitious and hard to achieve but it can be done and standards, if we have to have them, must aim high.
Patient involvement demands Board level involvement, not disinterested oversight. Senior managers must identity involvement opportunities within their direct remit. If only junior managers are doing it PPI will wither and fail. Senior managers should be asking every day “where can I involve a patient/public member” not “why should I involve…”
How can we attract high achievers as PPI managers? Absolutely critical for the future.
How do we position taking the role of a PPI manager as a ‘must do’ role for future chief executives?
As I know very well involved lay people can be great at finding gaps which surprise the professionals and open them up. Working together transformation becomes possible. You cannot train for this. You have to find the right people and create or manoeuvre the situations where they can do it. These people can be inspired by the opportunity, they won’t be inspired by a tick-box life.
I welcome standards if they help widen involvement opportunities and create structures that enable and encourage beneficial change. This exercise, as it stands at the moment, is about the detail of daily transactions, not about transformation. It will drive patient involvement into the side-lines.
NIHR – please start again.