Foreword by Sandra Jayacodi (Lay Chair of the Imperial BRC Public Advisory Panel)

“This reapplication process has taught us a lot about improving how we do things. It showed us that there are so many opportunities for meaningful and inclusive public involvement (even in a pandemic!) to ultimately enhance our health and improve our quality of life. We also learned how to work in a more collaborative way and in challenging circumstances.”

Background

The National Institute for Health Research (NIHR) Imperial Biomedical Research Centre (BRC) is a collaboration between Imperial College London and Imperial College Healthcare NHS Trust (ICHT) currently funded until 2022. To enhance our existing public involvement[1] activity, we undertook additional activities to support the development of new and existing research Themes for the purpose of the BRC reapplication for 2022 to 2027.

Our public involvement activity is a crucial component of the development of BRC’s proposed programme of research, helping us to understand priorities and unmet needs of the population in North-West London (NWL), and the relevance of the proposed Themes and research programmes to those needs. It also provided recommendations for how best to involve the local population in BRC research to ensure inclusion of those from currently underrepresented and underserved communities.

Activities undertaken

The public involvement activities were facilitated by the Patient Experience Research Centre (PERC) (a core facility of the Imperial BRC) and the Imperial BRC Public Advisory Panel (Panel) and involved a range of activities undertaken from November 2020 to September 2021. The public involvement activities included (see Appendix 1 in the full report):

• a series of 14 online group discussions with Theme researchers, Panel members and members of the public involving 245 people
• three online surveys receiving 1190 survey responses
• specific activities with 28 local community members
• Panel recommendations to the ICHT Research Committee about PPIE in BRC governance
• strategic advice provided by ICHT Strategic Lay Forum (SLF) and Panel members on the overall application including reviewing plans and materials for the public involvement activities
• ICHT SLF and Panel members shortlisted candidates and sat on interview panels to appoint Theme leads and co-leads to ensure that the recruitment process and the candidates addressed public involvement plans

Recruitment of underrepresented voices

In order to address underrepresentation in research, we tailored our recruitment approaches to invite members of the public who: had not previously taken part in our public involvement activities; and the voices of those often underrepresented in research through for example, establishing new contacts with communities and third sector organisations (see Appendix 2 in full report). This particularly impacted our group discussions which included people of diverse ages (range 13 to 93 years) and ethnicities (58% non-white). See Appendix 1 in the full report for further details.

Priority Areas identified for all Themes

• Long term conditions and comorbidities which have a large impact on the local population and pose significant challenges for research.
• Mental health as a specific focus and as a factor influencing other conditions.
• Addressing the multiple factors influencing health burdens including specific conditions, e.g. obesity (and linked to fertility), diabetes, COVID-19, digestive diseases, and non-alcoholic fatty liver disease, which were in part seen as linked to social factors and lifestyle.
• Air quality as both a key factor in worsening of conditions such as asthma, and as a broader environmental factor linked to mental and physical health and wellbeing.
• Using artificial intelligence to monitor response to treatments, identify at risk patients, and improve patient experience which informs the BRC thread of precision medicine.
• Finding ways to improve disease, including the precision and timing of diagnosis, particularly for conditions which are often missed or delayed (e.g. endometriosis, myalgic encephalomyelitis/chronic fatigue syndrome, inflammatory bowel disease), which are linked to the BRC threads of early diagnosis and precision medicine.

See Appendix 3 in the full report for priority areas linked to specific Themes.

Cross cutting issues

• Prevention of both common and rare diseases, for adults and children, to reduce the burden of ill health in the local population. This is linked to the potential for precision medicine, for example with molecular phenomics and digital tools that better communicate risk (precision medicine and digital health BRC threads).
• Early diagnosis and intervention.
• Developing communication for health promotion and research awareness through a range of channels; reaching different communities, with a specific call to address the digital divide that may be leading to further exclusion of some vulnerable groups.
• Transparent and secure use of patient data for health research and preventing access by private companies for profit. 
• Support for the development of digital health tools to reduce fragmentation of data and support communication, self-management, and remote monitoring.
• Using artificial intelligence to maximise the learning from data and as decision tool (rather than to make decisions).
• Addressing inequalities as determinants of health, for example poor housing, air quality, or access to early diagnosis and prevention.

See Appendix 3 in the full report for more detail on cross cutting issues.

Recommendations for future public involvement

Throughout these public involvement activities, many ideas were suggested about how to improve future public involvement and include:

• That a PPIE strategy should be tailored to relevant populations, and include communication using different media including radio, TV and face-to-face to reach diverse communities.
• To widen involvement and participation, clear concise information and tailored messaging is important for different communities including in different languages, for children and young people as well as adults.
• Public involvement should be included in governance, appropriately resourced, and have a public representative embedded in Themes to attend management meetings and promote a culture of involvement among researchers.
• Suggestions were made about how to identify those with lived experience, for example through primary and secondary care networks, pharmacies, community champions and third sector partners such as charities.
• Public involvement is important throughout the research cycle, starting with identifying unmet needs and research priority setting through to co-development and co-production of research and implementation where possible.
• The public should be integrally involved in ensuring that datasets are used for the public benefit, to provide review of ethical appropriateness of research and to inform decision making and consent processes for data access.
• It is critical to provide feedback at all stages of research especially to participants of research studies without whom the research could not take place.

See the Public Involvement Full Report: NIHR Imperial BRC re-application‌ for further detailed recommendations.

How we used the insights

Insight reports summarising key points from the activities were made available to Theme leads, the BRC Executive and the public who took part in the involvement activities. These reports are summarised in the full report and were used to shape the BRC application and have specifically informed the Patient and Public Involvement, Engagement and Participation section, including proposed public involvement in governance and resourcing. Through the process of conducting these 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.

Maria Piggin, Halle Johnson, Sandra Jayacodi, Helen Ward. “Public Involvement to inform the NIHR Imperial Biomedical Research Centre Reapplication 2022 to 2027”. Imperial Patient Experience Research Centre, October