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 Panel met at the Assembly House, Norwich.
There were two researchers present, the guest speaker Emanuella de-Lucia-Rolfe (Anthropometry specialist, MRC Epidemiology Unit) and thirteen participant members.
Matters arising from previous minutes
The revised consent form, reviewed by the Panel in July, was resubmitted and approved by ethics.
The study team has looked further into the patient objection opt-out. It appears that patients are opted-in to GPs providing your data and that people are only opted-out when they specifically request it. Norfolk appears to have a low opt-out rate.
The wording for opt-out varied from practice to practice and few mentioned the impact of opt-out on research. Some information regarding opt-out rates at practice level will be presented at the next meeting.
Panel members were thanked for returning the feedback forms giving their experience of being part the Panel. Their comments have been acknowledged and noted.
Talk on measurements of obesity
This was given by Dr Emanuella de-Lucia-Rolfe, an anthropometry specialist, who gave a thorough talk about obesity and body composition. She covered what obesity is and its increasing prevalence, especially in urban settings and in low and middle income countries.
Dr Emanuella de-Lucia-Rolfe described different anthropometric measurements, their strengths and their weaknesses.
The use of Body Mass Index (BMI) and its limitations for use in older people was described, for example, it does not distinguish between muscle and fat. It also does not show the distribution of fat around the body.
Waist circumference is used to look at central obesity (linked to higher risk of diabetes). This has been linked to increased all-cause mortality in some studies although this was not the case using BMI.
Waist/hip ratio is very difficult to measure. This is also limited as it does not distinguish between subcutaneous fat and the visceral fat (around the organs) which has already been linked to developing diabetes.
CT and MRI scans are the gold standard for measuring fat and fat distribution but there are ethical (radiation exposure) and logistical/cost restrictions for using them in research.
The DEXA (Duel Energy X-ray Absorptiometry) is a good alternative for large scale research and involves much less radiation exposure (equivalent to less than a long-haul plane flight).
The DEXA can estimate fat free mass (usually muscle), fat mass and bone mineral content. It can be used to look at body fat patterning, change over time and people’s perceptions of body shape. Body fat patterning can be very different in people with the same BMI.
The DEXA has been used in EPIC-Norfolk and two result scores are sent to GPs. A DEXA scan compares your bone density with the bone density expected for a young healthy adult of the same gender and ethnicity or a healthy adult of your own age, gender and ethnicity.
The scans obtained in EPIC are not diagnostic scans but the results can be used by GPs in addition to their knowledge of the patient to investigate further if required.
Some initial findings from both the EPIC 4HC and the Fenland Study show a potential link between reduced peripheral fat (fat found in limbs) and diabetes. A proposed theory is that if excess fat cannot be stored peripherally (in the legs or hips), then it may be deposited in other areas like the abdomen therefore affecting organs such as the pancreas, the liver and heart. This could lead to insulin resistance and hyperglycaemia. A paper on this has been accepted in the Nature Journal.
Fifth Health Check (5HC) update
Figures were given for number of participants approached by the end of September and the current percentages of participants who responded and agreed to a Health Check as well as those who have declined.
At the time of this meeting 84 participants had been seen in the clinic and appointment length was being monitored.
5HC Documentation is also being reviewed, taking into account the first responses.
Panel members will shortly be invited for a Health Check and will then be asked to provide feedback of their experience of the appointment.
The EPIC-Norfolk website is currently being moved from HTML4 code to HTML5 code. This, along with a ‘template’ for pages (CSS), will make the pages more uniform, less complex and easier to update in future. This is being done gradually, section by section.
Update of the EPAP page is a priority.
Agenda items for future meetings
Proposed subjects include ethics committees, EPIC Europe, definitions of dementia 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.