Lessons I learnt from the Alzheimer’s Society story of public involvement in research

The Alzheimer’s Society has published a new booklet entitled ’15 years of the Research Network.’ http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2261 It looks at the work of their Research Network of 250 people with dementia and carers in shaping and advancing the charity’s £5.3M research programme, some of their achievements, and a short history of how it all got started.

The story of the network – originally called Quality Research in Dementia (QRD) – is often held up to be a tale of one of the pioneering organisations of public involvement.  With some reason, not least the fact that it started its journey in 1999. The Society remains at the vanguard of charities plying this route within the not-for-profit sector many years later. It is disappointing and a matter of debate why more charities have not embraced public involvement in the same way.

I was working at the Society at the time when the idea of QRD emerged. I worked on the first public awareness campaign about dementia and research which contributed to this thought process. This won an industry award. Yet I had very little to do with the network’s setting up I am afraid. led organisations. 

The Alzheimer’s Society ‘Research Network’ story contains a number of universal lessons about public involvement in research. Some I have written about before.  But not all.  In brief, they are:

Time: It takes time to form, establish and embed public involvement in an organisation until it becomes part of normal business. No one ever tells you this at the beginning. Some people behave towards public involvement as if it should somehow flow freely once the tap is turned on. Think again.  Running water is only guaranteed if you prepare well and have a well-thought out plan in place.

Keep it simple: The quotes at the end of the booklet convey this best. The essence of public involvement is about bringing people together who have different perspectives and enabling them to focus on the same issue or challenge as equals.

Leadership: Nothing happens without leaders. But just as important as the avowed champion, is the sceptic who is brave enough to say to his colleagues: we should give this a shot because maybe, just maybe, they are right.

Continuity : Comes from money and appropriate budgeting. It is also a consequence of staff and patient leaders being supported to carry the torch. Through bad times as well as good. The Society booklet was written and produced by members of the network including many who have been there from the start. The network would not be what it is today without their staying power and memory for what it was like before. Many of them are also the patient champions who are now instrumental in the Society’s work around the Prime Minister’s Dementia Challenge.

Above the line: When it comes to public involvement in research you must be willing to put everything ‘above the line’ and up for discussion by patients and carers. It may be that you agree to put some bits off until later. But, at the beginning, you must show as an organisation that you are brave enough to listen to what people have to say – however hard – and turn this into an agenda for improving the quality of what you do.

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