Call overview and agenda

On 8 March 2021, Dr Nick Powell and Professor Gary Frost presented the proposed research plans for the proposed Digestive Diseases Theme in the Imperial Biomedical Research Centre (BRC) (2022 to 2027) to members of the Imperial BRC Public Advisory Panel (Panel) via an online Zoom meeting.

The aim of this particular online session was to:

• Introduce the Theme's proposed main areas of research
• Q&A
• Facilitate small group discussions exploring the topic further with panel members

 

Summary of Key Insights

This following is a summary of the themes identified in breakout room discussions, more details of which are set out below in the Digestive Diseases Theme Insight Report.

Comments on proposed research areas

The Panel were generally supportive of the Theme’s plans and expressed that precision medicine was a promising development, that faecal transplants (with an alternative name) are less invasive than some procedures, that liver disease is a relevant issue due to alcohol use and an aging population and that nutrition is a crucial issue to address at as early a stage as possible. Other areas of research were also suggested i.e. the relationship between gut health and pre/post menopause as well as prevention. Education was also considered to be crucial and could be addressed through different mediums including infographics and daily newspapers as well as and making the language used when discussing these conditions more acceptable i.e. using “gut” instead of “bowel”. Due to the prevalence of these conditions, these topics are a good way to engage the wider public in research.

Suggestions on improving engagement to address research areas

Panel members suggested: utilising hospital consultants and their clinics to identify patients to involve (as many patients would not know they could be involved in research) however it is important to also capture those whom it may not be as easy to speak to e.g. those needing an interpreter; identifying those affected by these conditions from existing data including primary care data; engaging children and younger people including through schools, social media, the Imperial Young People’s Network and linking with other campaigns on e.g. diet and obesity; utilising various other mediums including social media and podcasts and working with GPs to maximise pre-existing patient relationships and to share information about IBD research/opportunities; utilising existing patient support groups, third sector organisations and communities including engaging with community leaders.  It was noted that sensitivity was needed when addressing socio-economic inequalities and that building relationships between patients and researchers was necessary to gain trust and acceptability of research.

Suggestions on building strong public involvement in the Theme

Panel members suggested: utilising existing Imperial College resources and networks e.g. the White City engagement team’s network; emphasising the benefits of involvement i.e. the possible health benefit for people in the short or long term of research; asking patients what their unmet needs are and undertaking research priority setting activities e.g. jointly with charities or third sector organisations; establishing regular open lines of communication with public contributors to ensure a two-way dialogue; acknowledging the value of public contributors through building a community with the same purpose; and ensuring the Theme resources PPIE appropriately in order to undertake this work.

Suggestions for engaging with the wider local community

Suggestions for engaging with the wider local community included: identifying which communities you wish to reach and depending on their demographics, developing an appropriate strategy e.g. the age “spikes” in IBD between 20 and 40 years and over 60 years, engaging with local communities in different ways including radio stations, videos and digital engagement e.g. the VOICE platform, create a platform where people can talk about these areas of heath and share their experiences, involve carers especially of younger people with these conditions and utilise local hospitals and pharmacies which have existing relationships with people and could support this engagement.

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 Panel members 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.

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.