Social, Genetic and Environmental Determinants of Health
Zoom call with members of the public: introductory slides and breakout room discussions
Claire Shovlin, Helen Ward
Hosts / Breakout room facilitators :
Maria Piggin, Halle Johnson
Social, Genetic and Environmental Determinants of Health
Call overview and agenda
An online discussion on social, genetic and envrionmental determinants of health was hosted on Wednesday 1 September 2021 (5pm to 6.30pm) via Zoom Pro and was attended by 22 members of the public from a wide range of backgrounds.
The aim of this particular online session was to:
- Introduce the Imperial Biomedical Research Centre and its proposed Social, Genetic and Environmental Determinants of Health Theme
- Provide an overview, and an example, of and how this research is used in care and research
- Give attendees an opportunity to ask questions
- Facilitate small group discussions around the topic
Key Insights Summary
Attendees of the discussion session on 1 September 2021, provided perspectives about the following main areas.
Taking part in research based on their risk scores from social, genetic and environmental data, to offer "personalised" interventions
Attendees were broadly supportive of the potential to take part in studies about social, genetic and environmental determinants of health to offer them "personalised" interventions with one attending commenting that it was important for there not to be duplication of time and effort and for there to be a tangible benefit and one saying this was particular important for at risk groups in the population. Attendees considered their participation to be conditional on being provided with sufficient information including: information about data security (who would have access to the data (especially in light of the recent NHS Digital and GDPR issue) and ensuring Caldicott principles were adhered to so there were no surprises as to where the data ended up); information about the research including what the risk factors were, what the treatments/medicines were and risks associated with them , how would the intervention be personalised to them, how would they be contacted and by whom the time commitment required, what if they wished to withdraw part way through, what support, follow up and feedback would be received and what if something additional was discovered to be wrong with them. Honesty and transparency about the research was also a requirement. The information provided needs to be easy to understand but comprehensive. Some attendees were not keen to take part in a trial of an investigational drug, unless it was safe and had been tested.
Being reminded before being contacted again to be invited back to take part in additional research
Attendees were overall supportive of having more frequent communication. One attendee suggested using automated notifications to update and keep in contact with people and to keep in contact even if nothing is happening and in order that when people are contacted it is not out of the blue. Reminders are also helpful.
Who do you think should contact you, and how?
In terms of by whom people would like to be contacted about this research, attendees who were currently part of a research register expressed that they would be happy to be contacted by the register or by Imperial College, having provided their consent to be contacted about future research. Another said by researchers or practitioners. Other suggestions for inviting wider participation in future research included utilizing existing trusted contacts, networks, patient groups e.g. Heartlink (heart patient group) and GPs (if possible) although one attendee considered GPs were not where she expected to hear about research. It was also considered important to involve local communities from diverse backgrounds in the research. One said that if it is personalised based on a risk score then it would be useful to be contacted with more information with a knowledgeable person to call.
One attendee stated that people would need to be confident in the legitimacy of the contact (i.e. was it a genuine research study or a scam). Communications also needed to be made appropriate to the recipient e.g. an elderly person may not want an email or someone may not be illiterate. One attendee considered that a personal approach (e.g. by contacting someone’s family members who may also be at risk) should be adopted to invite people to take part in this research.
Responses to increased genetic risk of a disease
Although receipt of information about having an increased genetic risk of a disease was considered by some to be considered to be a benefit. One attendee was apprehensive about finding out this information and one was unsure as to how they would feel until faced with it. There was acknowledgement of it also potentially being frightening for people. Attendees recommended that communicating this information should be done sensitively and in person or over the phone rather than in writing by letter or email and at a time when the recipient chooses. It would be beneficial if it was communicated by someone they knew who could explain how it was discovered and the next steps. Attendees considered that support would need to be provided to offer people coping strategies including talking therapies.
Would it change your relationships with family, or health professionals?
There was a mixture of responses as to whether knowledge of such a risk would change relationships with family members as it may impact someone negatively if the risk was as a result of a genetic issue. It may also depend on a person’s culture. One said it would enable them to be closer to both their family and health professionals. Two attendees were unsure if they would share the information with family members. One wasn’t sure if their relationship with family and health professionals would change and one didn’t think so. One said their relationship with health professionals wouldn’t change. It was noted that the knowledge of having an increased genetic risk of a disease could also have an impact on one’s relationship with an employer.
Perspectives on proposed research programmes (i.e. prevention, COVID-19 recovery, adolescent health, dementia)?
Attendees were broadly supportive of the proposed research areas as these are currently prominent areas. Prevention was considered to always be better than cure albeit a wide parameter, to be less costly and more effective than having to come up with a solution and reduces strain on the NHS e.g. diabetes. Adolescent health was considered important by identifying issues at an early stage although the age needed clarification.
Attendees also made suggestions for additional programmes of research including diabetes and in particular, adolescent diabetes, mental health (and the impact of people returning to a post pandemic normality after being “institutionalised” by lockdown) and the impact of COVID 19 on child development. Research on the learnings from COVID 19 were also suggested i.e. the positive outcomes which could be applied more widely e.g. mask wearing to avoid winter infections, successful vaccination programmes. Additionally, respiratory illnesses research was suggested especially in relation to those with pre-existing health conditions e.g. asthma in light of the impact COVID 19 had on asthma patients. One attendee considered the proposed programmes to be ambitious and broad and another considered the programmes to be overlapping e.g. COVID -19 recovery and alcohol use and abuse during the pandemic. The precision medicine aspect was considered to be “ground-breaking” by one. Attendees considered there was a need to address digital exclusion and digital poverty which if technology was to be used in the Theme’s research (which was supported) would exclude people. To overcome this, partnerships with voluntary and community sectors would be required. It was noted that some people have a disinterest in using technology, even if they have access to it. Attendees considered the Theme had the unique opportunity to dispel myths about certain conditions e.g. that type 1 diabetes is caused by bad diet or too much sugar and all liver disease is caused by alcohol abuse. There is also an opportunity to educate patients about their own conditions with provision of more information than is currently available (e.g. for Type 1 diabetes by the NHS) and to also educate the public more broadly to address the apportionment of blame to individuals who have certain conditions which are caused by genetics. Patient groups could be utilised to help educate and raise awareness too.
How we used the insights
This insight report summarising key points from the session was made available to Theme leads and the BRC Executive in order to shape the BRC application. The report was also provided to the members of the public who took part in the involvement activity. A full report on all public involvement activities undertaken in preparation for the BRC application can be found here. Through the process of conducting this and other public involvement activities, we have established a wider and more diverse network of contacts for ongoing involvement. We would like to thank all those members of the public who gave their time and thoughtful insights through these activities, and the researchers who engaged enthusiastically in the process.