The EPIC Participant Advisory Panel met in Norwich on Monday 29th October 2018. There were ten participants and ten researchers present. 3 apologies.
EPIC Norfolk research symposium feedback
All agreed the EPIC Norfolk research symposium had been an excellent event. Members commented on how well organised the day was. The breadth of research covered and the vision of founder Elio Riboli were also praised. Kay Tee Khaw thanked the input of EPAP and to Ron for his talk on the day.
Presentation on the content of this year’s EPIC newsletter that will be posted to the full cohort within the next month. This will include a spread on the research symposium, frequently asked questions for participant information and a message from Prof. Nick Wareham on the future of EPIC.
EPIC Norfolk, the future
Prof. Nick Wareham presented an overview of the current research context in which EPIC sits and proposed vision for the progress of EPIC in the future.
Nick and the MRC Epidemiology Unit team will continue to position EPIC Norfolk as a leading cohort study Europe-wide. The research context in which cohort studies, such as EPIC, exist has changed since the creation of the UK Biobank, a national health resource following the health and wellbeing of 500,000 volunteer participants. Use of the UK biobank samples and health data enables epidemiological research at an unprecedented scale.
EPIC has a window of opportunity to maximise the value of the participant data collected to date. Through exploiting both the size (smaller numbers can mean more costly research is possible) and the fact that data has already been collected over a number of time points.
Strategically, we are interested in studying the full spectrum of clinical and other functional endpoints that really effect people as they age. Importantly, we will further investigate the mechanisms that link the causes of diseases to health outcomes.
Open access and sharing of research data is scientifically important to maximise the benefit that can be gained from the data collected in EPIC. The current model EPIC uses will need to adapt but we are keen to ensure that the use of data has some oversight and quality assurance.
A large volume of data has been collected throughout the EPIC study. As health checks continue there are diminishing numbers of participants returning for follow up. At present, there are no plans to run a 6th health check but to use the data and samples already collected alongside data collected from health records. This is not to rule out future participant involvement, such as questionnaires, but the resource cost of this needs to be weighed against the scientific value of the data collected.
The Participant Panel, moving forwards
The contribution of EPAP over the past 8 years has been extremely valuable and important in guiding the work of the research team and there is still much work to be done going forwards. Areas where we are seeking EPAPs advice are:
- Use of stored samples – what activities are/are not in line with participant expectations?
- Development of future participant events, newsletter and data collection methods
- Collecting secondary health data from GPs and other national registries – what data is acceptable for us to collect?
- What outcomes really matter to participants? What should we be reporting?
- How do we allow access to EPIC data whilst maintaining high quality assurance?
Farewells and thank you
Heartfelt thanks to Nichola, Shabina, Kay-Tee, Steph, Robert, Daniel, Laura and the whole of the EPIC team was expressed by the panel. In recognition of their contributions, gifts were presented and all wished well for their future endeavours.
Several members commented on the benefit of having invited speakers at EPAP. Particularly talks on the use of the urine samples and a talk from a member of an ethics committee were requested.