The NHS Research and Development (R&D) strategy is committed to involving members of the public in the work it undertakes - not as "subjects" of research, but as active participants in the research process. Members of the public have already played an important role in some areas of R&D in the NHS, but there is room for improvement.
Various organisations have been set up to encourage the public to become more involved in research. The aim of these is to improve the way in which research is prioritised, planned, conducted and how the information obtained is communicated and used.
It is now acknowledged that research which is directed towards the public need is more likely to produce useful results which can then be used to improve practice in health and social care.
As part of that commitment, EPIC-Norfolk wishes to actively promote greater participant involvement in our research. For this reason, in 2010 we set up an EPIC-Norfolk Participant Panel to act as a consultation group to advise us on our research. We see the formation of this Panel as a partnership between EPIC participants and us as researchers.
Members of the EPIC-Norfolk Participant Panel can be involved in the designing of health questionnaires, writing of lay summaries, participant information, dissemination of results and providing a lay perspective on potential projects we may be considering for the future.
The meeting was attended by twelve participants and five of the EPIC research team.
Matters arising from previous minutes
The minutes were reviewed and various updates given. The stand-alone Questionnaire (FU6) and Nutritional Research data collection are being proofread and minor amendments have been agreed by the sponsor (the University of Cambridge) and by the Health Research Authority. The questionnaires will be dispatched to the whole cohort in late May/June. There will be two further invitations for participants to undertake the DietWebQ; one which will be sent out with the Fifth Health Check (5HC) invitation pack and the other which will be given at the health check.
Both Norwich and Cambridge staff are working together on a script regarding opt-outs by participants not wanting to share their medical records. The possibility of raising the issue in the study letter sent to GPs for the 5HC is being followed up.
Talk on Dementia
This was given by Linda Barnes, the National Co-ordinator for the Cognitive Function and Ageing Studies (CFAS)
She gave a summary on the six CFAS centres across the UK that have looked at cognition and physical function. This was done through over 48,000 interviews with people either in their own home or in care home settings. Information from these studies is used by NHS England to help with dementia diagnosis rates, and to plan government policies and dementia services.
A new study (CFAS II) began in 2008 to research the associations with better health, education and better health screening. The study also sought to look into how we can help people to live longer healthier lives with fewer years of disability.
The speaker explained that dementia is caused by disease processes or injury in the brain, and is marked by memory disorders, personality changes and impaired reasoning. It comes in different forms such as Alzheimer’s and vascular dementia which includes strokes.
Many people have Mild Cognitive Impairment (MCI), characterised by slight (but noticeable) memory or thinking difficulties. Forgetting a name and then remembering it later is something that happens in normal ageing though.
The risk factors for dementia include age, blood pressure, smoking, alcohol, diabetes, obesity and social isolation.
The Fifth Health Check
The 5HC appointments are going well. A total of 701 participants have been seen since September (an average of 97 a month). The sending out of results is happening within a month of the appointment.
The clinic is currently advertising for a new member of staff (research nurse) to increase throughput.
Panel members provided feedback on their recent 5HC appointments. Points raised have been integrated into appointment planning.
The panel asked if more information could be given about the activity monitors, such as the reason for the use of both monitors; possibly on the information sheet that goes home with the participants, or with the results sent to the participant after their appointment.
It was also suggested that one or two lines of explanation on the other coloured areas on the DEXA body scan image might be useful for participants.
Peter Gibley will be attending the INVOLVE conference (London) in November with Nichola Dazell. Peter will provide conference feedback session at the January EPAP meeting.
Agenda items for future meetings include a talk by a member of an Ethics committee, information on other EPIC Europe studies and results from the EPIC eye study.
AGM meeting 2011
Scoping meeting, March 2010
For more information about the Panel please contact Nichola Dalzell at firstname.lastname@example.org or on 01603 218165.