The meeting was attended by two researchers, eleven participants and visiting researcher Helen Costello.
Update from previous meeting
The Fifth Health Check (5HC) questionnaire (FU6) will be sent out as a standalone questionnaire. A draft has been circulated to the Chief Investigators, who will liaise with the research leads to check all areas have been covered in the questionnaire.
Comments from the Panel about the Human Tissue Act have been incorporated into the submission to Ethics. This is currently being finalised and will be forwarded to the committee for approval.
Following feedback from the Panel regarding nutritional research and the possibility of including a web-based method of recording food intake into the 5HC, the decision has been taken to keep this separate to the 5HC activities. Participants could be asked to fill these in at another time point/at home as part of a separate EPIC project which is currently being formulated.
Brains for Dementia Research
Dr Helen Costello, Dementia Platforms UK (DPUK), gave a presentation about the Brains for Dementia Research (BDR), which is part of the Brain Donation work stream of DPUK.
She covered the reasons why research on human brain tissues is vital, how people register for brain donation, brain tissue retrieval and brain tissue processing.
Some of the discussion points that arose were a shortage of healthy brains (essential for comparison with diseased brains) and potential problems with different registration systems.
There is no upper age limit for being considered for brain donation – it is decided on a case by case basis – and it is possible for someone who lacks capacity to be registered for brain donation under certain specific circumstances.
Mental Capacity Act
The Panel considered the effects of the Mental Capacity Act. EPIC is investigating the possibility of applying for ethical approval to include people who lack capacity to consent in the 5HC and the Panel were asked for their views should this be a route that was decided upon.
Members were given a short summary of the Mental Capacity Act (MCA), and asked for their views on it.
Points that were discussed:
- the importance of assessing capacity and making sure that people fully understand the decision
- careful wording of documentation
- taking into account mood and personality
- the idea of carrying on in future without capacity
- would the group be distressed if somebody was advising on their behalf as to whether they still wanted to take part
EPIC 5HC planning
Many of the members’ suggested amendments had been incorporated into the new draft appointment information leaflet. A draft participant 5HC feedback form will also be sent out for Panel comments.
The Panel then reviewed the proposed consent forms and provided comments on these.
The potential structure of the 5HC is currently being finalised. Possible new tests are to be included in addition to repeat measures carried out at previous Health Checks. The protocol for the 5HC is being finalised and will then be submitted to ethics for approval.
There was a request for a talk on dementia and its definitions.