Key Info
Date:
6th September 2021
Activity:
Zoom call with members of the public: introductory slides and breakout room discussions
Speakers (A-Z):
Chioma Izzi-Engbeaya, Pinelopi Manousou
Hosts / Breakout room facilitators :
Halle Johnson, Maria Piggin
Non-Alcoholic Fatty Liver Disease Research
Call overview and agenda
An online discussion on non-alcoholic fatty liver disease (NAFLD) research was hosted on Monday 6th September 2021 (5pm to 6.30pm) via Zoom Pro and was attended by 9 members of the public with lived experience of NAFLD.
The aim of this particular online session was to:
- Introduce the Imperial Biomedical Research Centre and the Metabolic Medicine and Endocrinology Theme
- Provide an overview of the NAFLD research being undertaken by the Theme
- Give attendees an opportunity to ask questions
- Facilitate small group discussions around the topic
Key Insights Summary
Attendees of the discussion session on 6 September 2021, provided perspectives about the following main areas.
Views on the proposed research areas
Overall attendees were supportive of the two research areas explored during the session: improving diagnosis of NAFLD through Artificial Intelligence and improving treatment of NAFLD through hormones. Attendees were supportive of the development of a single non-invasive diagnostic test to improve diagnosis of NAFLD and noted that the use of artificial intelligence to support this development could, save time, enable earlier diagnosis, and could help researcher to learn more about the disease if implemented more widely, including internationally. When discussing the acceptability of this method, some individuals raised concerns over the quality of data being inputted and the potential accuracy of the programme. Some felt that the benefits outweighed the concerns and that clear explanation of the role of AI could help alleviate concerns.
Attendees also provided views on the research into hormonal treatment of NAFLD and the perceived acceptability of using a hormone pump as a means to deliver the treatment. Overall, attendees felt that wearing and using a pump was a minimal inconvenience in relation to the benefit of a possible treatment for NAFLD. Some individuals wanted further information about the pump, including whether it was painful, what it looked like and how long it needed to be worn for and another felt that where the pump was placed needed further consideration to maximise comfort for individuals.
In addition to the research areas discussed, individuals also suggested further areas of focus which the researchers should consider, including more work on prevention, exploring the role of genetics and ethnicity on diagnosis, development of screening programmes for NAFLD and exploration of other contributing factors including gut health, diet, and weight. Alongside the research, individuals also felt that promoting liver health and further education for the public about the liver and NAFLD where needed.
Increasing public involvement in, and engagement with, NAFLD research
When asked about public engagement and involvement in NAFLD research, attendees felt that it was first critical to raise awareness of the seriousness NAFLD, as well as promoting ways to achieve good liver health. Individuals suggested that creating a media campaign and advertising through different mediums, such as social media, television, and flyers in GP surgeries, as well as advertising in a variety of languages would be helpful ways to increase awareness and education about this disease. When reflecting on motivators and barriers to participating in NAFLD research themselves, losing weight and improving health was felt to be a motivator, whereas concerns around possible adverse outcomes from clinical trials, the impact of using hormones and maintaining outcomes after the trial were cited as barriers. One individual also highlighted the issue that many individuals are unaware that they are at risk of, or have, NAFLD which would hinder recruitment.
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.
Contact us
PERC Director and Co-Founder
Prof. Helen Ward
h.ward@imperial.ac.uk
For enquiries about PERC's research activity, please email:
patientexperience@imperial.ac.uk
For enquiries about public involvement in research, please email:
publicinvolvement@imperial.ac.uk
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