Call overview and agenda

On 8 March 2021, Dr Rasha Al-Lamee and Dr Graham Colepresented research plans for the proposed Cardiovascular 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 tthe Theme's propsed 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 in the insight report.

Building on and improving the existing patient reference group

Panel members considered that the existing ORBITA patient group could be built on and improved by speeding up the translation of research by involving patients and the public including in HTA processes. Relationships with charities such as the British Heart Foundation (and their resources e.g. newsletters) and GPs could be utilised and well as the Panel’s links.  Due to the high prevalence of Cardiovascular disease among ethnic minority groups, their involvement is very important, and these groups can be reached via different mediums including community groups, public noticeboards, places of worship, religious festivals and gyms. Groups in the population who are at risk could also provide different insights. The Panel recommended the involvement of carers of patients, young people (through university events) and patients treated in researchers’ clinics with known disease specific experience.  Ensuring public involvement activities are accessible to different groups including those who work during the day and utilising interpreters and translations for those who don’t speak English. Also ensuring public involvement and research participation is more inclusive i.e. not just involving people who already participate in research and further excluding others by moving research to an online platform. Panel members also recommended utilising social media more including Instagram as well as using videos to explain research studies and/or participation. They also recommended emphasizing and promoting the benefits of research including to a patient personally.

Reporting symptoms on a smartphone

Panel responses to asking patients to report symptoms on a smartphone were broadly supportive and the Zoe app was given as a good example of doing this for COVID symptoms. However, the Panel considered that reliable smartphone and internet access and support and education (to avoid excluding people) needed to be put in place to be able to do this.One Panel member was not in favour of using a different phone than their usual mobile phone to do this. Transparency was also considered key with people being clearly informed about the safety and purpose of the app. One Panel member said they would need to have a relationship with the organisation asking for this information, know how it is relevant to them and be told what it used for. The concerns identified included that not everyone has access to a smartphone or knows how to use one, that seeing people face-to face is important for fear of symptoms being missed by the patient.  Other concerns were whether the smartphone app could be translated, whether different smartphones’ capabilities would impact being able to do this and whether patients would be confused about how to report symptoms. People would also need to be assured about the safety of their personal data in the app.

Labelling anonymized images

Panel responses to patients’ labelling anonymised images to help image analysis were broadly supportive and a suggestion was made to have ‘image labelling’ events which people did this in groups.  However, the Panel considered the following needed to be put in place to be able to do this: their grading needed to be anonymous, education about what they were being asked to do and their consent provided to do this. Concerns raised included the capability of patients to be trusted to do such a task and the risk of gamifyingthe task which may exclude people if it is too competitive.

Improving PPIE in the Cardiovascular Theme

Panel members made the following suggestions for improvement of PPIE in the Theme: educate younger researchers in PPIE, provide clear concise information for dissemination among communities, emphasize the benefit of involvement and ensure reciprocity in the involvement relationship including providing training to public contributors.

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.