The NIHR BioResource Centre Birmingham recruits participants with long term health conditions such as diabetes, mental health and rare diseases across the University Hospitals Birmingham NHS Foundation Trust (UHB) and the Birmingham Women’s and Children’s NHS Foundation Trust. They are the lead for the Non-Alcoholic Fatty Liver Disease (NAFLD) BioResource, which was established in 2019 and covers a spectrum of diseases ranging from simple steatosis to cirrhosis.
To date, over 2,500 NAFLD patients have joined via the Birmingham Centre to help support research into the disease. Pre-pandemic, there were 11 volunteer recruitment sites which were all forced to close during lockdown. Since the pandemic, with help from colleagues at the Newcastle and Nottingham hubs, the NAFLD BioResource now operates over 60 recruitment sites.
Furthermore, the first Stage 2 study using blood samples from 300 NAFLD participants has been approved. The study aims to investigate a low-cost testing method for the early detection of NAFLD in patients.
Reaching out to local communities
At this year’s Rare Diseases Day (28th February 2023) event, Clinical Trials Coordinator Humeira Hafsa had an exhibition stand at the Queen Elizabeth Hospital (QLE). She spent the day talking to members of the public about joining the General Population cohort, educating them on the benefits of volunteering with the BioResource, and gave out leaflets to anyone interested.
Similarly at the Clinical Research Day (19th May 2023) event at the Queen Elizabeth Hospital, the Birmingham team had a stand where people could come and speak to them about all things BioResource. Information was provided via Patient Information Sheets (PIS) for each study, as well as a sign-up sheet for anyone who wanted to be contacted about joining. In the end, 30 people signed up! The team also put on family-friendly activities with games such as guessing how many blood tubes are in the jar, and gave out BioResource-branded merchandise.
Promoting public participation on local radio
Back in February, two colleagues – Zohur Miah, the NIHR NAFLD BioResource Programme Manager, and Farfia Capper, the NIHR Clinical Research Facility (CRF) Clinical Deputy Manager – gave an interview on local Birmingham radio station Unity FM. They discussed the BioResource, NAFLD and the importance of patient participation and diversity in research. A patient volunteer joined them to speak about her experience with liver disease and explain her motivations for taking part in health research. You can find out more in our blog article or listen back to the interview.
Showcasing the NAFLD BioResource
A couple of months ago, the team filmed and published two videos - patient volunteer focused and researcher focused - about NAFLD and the NAFLD BioResource.
In the patient focused video, a NAFLD BioResource volunteer shares their experience living with NAFLD, the changes they had to make to their lives in order to manage the disease, why they chose to join the NAFLD BioResource and the positive experiences they had during the study.
The researcher-focused video provides information on the effects of Non-Alcoholic Fatty Liver Disease (NAFLD) and why further advances are required in the understanding, diagnosis, staging and treatment of this condition and why NAFLD BioResource is one step towards achieving this goal.
The importance of diversity in research
As part of our ongoing community engagement campaign aiming to recruit volunteers from diverse backgrounds - a partnership between the NIHR BioResource, Egality Health, and eight community organisations – we teamed up with creative digital media agency Fresh RB to produce a short video which emphasises transparency in the process of giving blood to research via the NIHR BioResource.
The video starred Sukhjeen Kaur, the CEO and Founder of community organisation Chronically Brown, who discusses her experience with a chronic illness, representation in research and how easy and simple it is to take part. The film also features Birmingham’s Humeira Hafsa in her role onboarding a volunteer and demonstrates all of the steps involved in signing up: the volunteer checking in at our local Birmingham recruitment site at the Queen Elizabeth Hospital, Humeira providing the PIS, health and lifestyle questionnaire, consent form and answering any questions the volunteer may have, and finally collecting the blood sample.
The film has been shared across social media and the community organisations’ networks as part of the 12-week campaign, with the primary audience being South Asian and African communities, and the secondary audience being the elderly population.
Get in touch with the team
You can get in touch with team at NIHR BioResource Centre Birmingham via email Humeira.hafsa@uhb.nhs.uk or via telephone at 01213718080.
Learn more about our Mental Health BioResource and if you are interested in supporting further health research, please consider joining the BioResource.
If you are a researcher, learn more about using the NIHR BioResource to support your work.
