Notes from the field of public involvement

Wednesday, 14 February 2007

Patient Involvement - Pockets filled with Gold or the Empty Hall?

My eye was caught by a box ad on page 11 of today's Times (14/02/07) where a research organisation is recruiting people to attend focus groups with people who have cancer to learn about their experience with treatment.

The 1.5 to 2 hour meetings will be in London and participants will get £40 for their time.

This is of course standard practice and while £40 may be towards the high end of the payments scale, it seems right for this sensitive research amongst people who have cancer.

We did some work last year tasked with finding the 'hard to reach' and for young people, we went for the commercial recruiter who delivered the goods. We turned up at the community centre, pockets and brown envelopes stuffed with cash which we handed out against a signature to the grateful young people of South Glasgow. The rate per head was a lot lower but enough to get 15 people there and for the most part, ready to talk.

It certainly beats recent experience of consultation in a large room waiting for the public to turn up and no one comes except us and people from the client organisation and guess what - we were all being paid to be there.

It is a reminder that the model of public participation as discussed in the evidence submitted to the Parliamentary Committee on Health is in essence a politic or perhaps better a civic model of persons held to be disinterested (no personal gain/ advantage available) but yet passionately interested in the topic - health for example. The civic model treats you like a councillor or someone driven by all-consuming ideologies and the volunteer disappears into the whole structure of meetings, agendas, minutes and terms of appointments. And if you get it wrong and do not tap into the activist vein (step forward the usual suspects), the hall is empty. 

I remember some National Consumer Council research questioning people on participation and the finding was that those asked saw filling in a market research questionnaire or indeed attending a focus group as their contribution to public participation.

So what if they get £20 or £40, at least they turn up and talk. Could we adopt this model for all participation - particularly for the 'hard to reach'? No - because to do it all this way would be, as things stand, to conspire and connive in benefit fraud with those people who are part of a 'hard to reach' group however defined and who often are in receipt of benefit. (There are other risks of course about inventing a para-professional league of participants - the rented army of opinion givers.)

Stuck of SE21

I am looking for suggestions in the Health Committee's document  to see if others have raised this but am foiled by this mass of evidence being presented in a way that makes the information in it unuseable.

[Technical Aside: Google Desktop searches inside Adobe documents now but the PDF link on the Committees site did not work for me so I could only browse in the HTML document which is the same as reading. I hope Mr Tritter has set his researchers on this and finds ways of mining the data to pull out the undoubted plums.]

But you do not have to look far using the Adamson approach to thick books - start at the end and work back - to find this from Mr Paul Brian Torey (PPI47) talking of his experience

"What some of us have seen is patients being sucked progressively into the 'meetings culture' because both Trusts and NIMHE and other agencies have shaped 'patient involvement' inside the pre-existing vacuous disempowering context of no 'Patient Choice' and therefore into one of the pre-existing bureaucratic practice models i.e. meetings meetings meetings is all the game.

Suddenly empowerment was translated as 'patients going to meetings' with planners and teams. This is frankly and eventually frustrating and quite crazing."

Well said, sir.

Colin Adamson | (Problem occured connecting to database: The server requested authentication method unknown to the client