Scotland has arguably lagged behind the other three nations of the UK in embedding public involvement in research.
There has undoubtedly been some good work, not least on things like the sharing of patient data issues and clinical trials recruitment (the Scottish Health Research Register SHARE being an innovation of note). But research funders north of the border have not had a shared vision for public involvement and one of the principal reasons why, is a lack of imaginative leadership from the top.
Perhaps that is about to change at last. Step forward the Scottish Chief Scientist, Andrew Morris, and the new draft research strategy for Scotland he published yesterday. This following some months of work as you might expect, including a specific meeting about public involvement held last November which I spoke at.
Chapter 2 sets out their vision and proposals for forming a closer partnership with patients and the public. In terms of strengthening public involvement in the research process CSO (Chief Scientists’ Office) Scotland is proposing:
The group will be renamed the CSO Public Engagement Group (PEG).
- There will be broader representation in the work of CSO, including lay participation at CSO policy and strategic committees
- There will also be greater lay involvement in the planning and review process of CSO investments such as funded units, Bio-repositories and the focus of CSO grants
- The role of lay representation in raising public awareness in the understanding of clinical research will be developed further
In bold type, they also make a firm commitment that: ‘CSO will require the newly restructured NRS Research Networks to show evidence of involvement with the public in their work, and to embed patient and public involvement in their management processes.’
I suspect the headline-grabbing item in the document from a patient and public standpoint is the firm proposal to set up a Clinical Trials Register for patients and the public to find out about open, recruiting clinical studies and express their interest online.
This goes one step further than the UK Clinical Trials Gateway which shows people trial information but, other than giving them contact details for the trial and general information on how to discuss a trial with their doctor, does not aim to support that contact further and never has. They also envision using electronic records to enable GPs to receive alerts on trials that their patients may be benefit from taking part in.
The research strategy is now out for consultation and you have until 30th September to respond.