Call overview and agenda

An online discussion on molecular phenomics was hosted on Tuesday 14th September 2021 (5pm to 6.30pm) via Zoom Pro and was attended by 29 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 the Molecular Phenomics Theme 
• Provide an overview of molecular phenomics
• Provide real life examples of how molecular phenomics can improve clinical care, population health and personalised medicine
• Give attendees an opportunity to ask questions
• Facilitate small group discussions around the topic

Key Insights Summary

Attendees of the discussion session on 14 September 2021, provided the following perspectives:

Overall attendees were supportive of the use of molecular phenomics to improve clinical care, personalised medicine, and community health with individuals noting that it is an ‘interesting topic which everyone should be aware of’ and the area was ‘important to open a new frontier in treating disease’.

During the breakout room discussions attendees were posed three possible scenarios in which molecular phenomics could be used in the future. Their reflections are captured under the following questions:

Which scenario would you prefer, if any, and why?

A toilet in your home that can provide feedback about any aspect of your health through automated urine analysis: This scenario was considered convenient and was noted to save time and effort compared with having to go to the GP or walk-in clinic to undertake such a test. Reducing burden on GPs and the NHS was cited as a reason for this possible scenario to be preferred, as well as being able to get results quickly and having greater responsibility over health including the ability to self-monitor and manage health.

Concerns for this scenario were raised around intrusiveness, accessibility (if there was a cost implication) and most significantly the potential for having such a tool available in your own home to cause anxiety or have a negative psychological impact.

Providing reassurance, having the opportunity to obtain professional interpretation of results, and doctors monitoring and screening feedback before it goes to the individual were considered important. It was also felt that any information or feedback provided should be accompanied with further support and advice.

A walk-in clinic, [separate from your GP and open to all] that conducts urine tests to analyse any aspect of your health: Comments in support of the walk-in clinic scenario cited it as being less intrusive (compared to the first scenario) and enabling you to have greater autonomy over what you want to do. Being separate from the GP was also considered preferrable, as well as potentially being more accessible for people.

A urine test, conducted by your GP, which can be sent off to analyse any aspect of your health: Comments in support of having a test at the GP, noted that this was preferred as you already have an existing relationship with your GP and that this felt more professional. Attendees also felt that it was beneficial to be able to follow-up or ask questions following the test results.

Across scenarios, concerns around accuracy of such tests and mistrust of results were raised, alongside potential issues with data sharing and security (i.e. where the information goes and how it will be used) and implications on insurance if knowledge about your own health was more readily available.

What sort of information about your health would you want to know?

When asked about the type of information that they would like to find out about their health, responses were varied some attendees wished to know everything (the good and the bad), which was very detailed and comprehensive.
Information about early identification of disease or illness, including information which would help prevent and lower risk of disease were considered important. Information on medication responses, hormone imbalances, nutrition and diet, and the impact of environmental factors on health were also highlighted. While some attendees were keen to know their risk or genetic predisposition of having a disease, others felt that they would not want to know while they were still young and if there was no cure/treatment available for the particular disease. For attendees who did not want to know about risk of disease, it was considered acceptable for such results to be directed to a GP, or other health professional.

Further, it was considered important that any information or feedback received about health should consider the potential psychological impact of receiving such information and that additional support and advice should be available or provided. It was also suggested that the type of tests undertaken should be the choice of the individual and mechanisms should be in place to choose personalised options, flexibly.

How would you like to receive information about your health?
Views on the frequency and mode of delivery of information about health were varied, some individuals wanted information as soon as possible, while others felt that being able to delay when information was received may be beneficial. Many preferred to receive information face-to-face or in person (via phone or video call) and wanted information to be delivered by a professional (e.g. GP), so they could follow up and ask any further questions. Others felt that sharing information via the NHS app or other smart app would be preferred.

Overall, the preferred mode of delivery was largely dependent on the seriousness of information with individuals wanting the information to be delivered in person by a health professional if more serious while minor information could be received via text, email, app or phone call.

A personalised approach was again cited as important, with individuals giving the choice and flexibility to decide how and when they receive information.

Are there any other ways that you think we can use molecular phenotyping to improve clinical care and the health of our local community?
Early identification of disease and illness such as diabetes, heart problems, cancer and lung disease were considered a priority, as was identifying other ailments such as intolerances and allergies, pain and depression, if technology permitted. Exploring response to treatment was also considered important, particularly in regard to new medications, and identifying any adverse reactions following treatment. Personalised health was also raised as an important area with individuals wanting to know what medications suit them best, what lifestyle changes they should be undertaking to prevent disease, and to support nutrition, inform pregnancy and weight loss. Using molecular phenomics to; extend research into the areas which ‘most people are suffering’, increase accessibility to healthcare and help manage long-term conditions were also raised as a priority.

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.