The review panel conducting the NIHR strategic review of public involvement in research meets this coming Monday. So, I thought you might be interested in a very brief update on where we are, and what I expect to happen next.
The deadline for providing views and opinions in response to the review’s initial call has now passed. We received just over 500 responses from individuals and about 80 written submissions and documents. The majority of this latter group were from organisations including: patient groups, charities, NIHR organisations, universities, NHS Trusts and regulators.
A number of submissions have been collaborative efforts in which a number of organisations have clubbed together to respond and also done their own mini local consultation with service user and patient groups as part of the process. Some submissions are still dribbling in.
In addition, as you may remember, we took part in four regional events and did presentations as part of other activities up and down the countries including to the UKCRC Board, NIHR Advisory Board and NIHR Strategy Board (these three are key parts of the overall governance of clinical research in the UK). We also held evidence sessions with international public involvement colleagues, charities and the pharmaceutical industry, and a workshop with about 20 medical research charities. As you might expect, member of the INVOLVE advisory group provided both oral and written evidence.
In terms of individual responses, when people were asked what perspective they brought to the review: 41% said ‘public, service user, patient;’ 24%, ‘researcher’ and 12%, ‘public involvement lead or specialist.’
The final content and profile of the response to the review will be published as part of our report.
The panel’s meeting on Monday will be our first opportunity to look together at what has come in. We will want to identify the emerging themes but also think about areas where we might want to delve a bit deeper into the evidence. I hope we can also begin to think about some propositions for the future of public involvement.
If you want to see a short presentation by me on the review at the recent Health Services Research Network (HSRN) conference – and key themes that were coming through at that point in mid-June – then please look here.
However, July will be very much when I will want the panel to individually and collectively have a chance to reflect on what the community has told us. Fact is, we have had enough evidence to create a ‘national library’ of public involvement in research. It is generous in spirit, rich in content and we have a responsibility to do it full justice over the next few months and in our recommendations.
August might see us define and be able to test our direction (we have not forgotten about the possibility of tweet chats). Then I expect our final meeting to take place in September. This will be when we will really hone in on the conclusions and recommendations and write the report.
I should add that the review panel wouldn’t have made the progress we have without the support of CLAHRC North West London who very kindly allowed us to second Rachel Matthews from their team. Rachel is the CLAHRC’s Programme Lead for Patient and Public Involvement and her expertise is proving invaluable as we analyse the treasure trove of evidence before us.
We remain on schedule to publish in late October, a month before the INVOLVE conference in Birmingham on 26/7 November.
I hope this is helpful. Have a great weekend.