Since joining in 2013, the NIHR BioResource Centre University College London Hospital (UCLH) has recruited a number of volunteers, both with and without health conditions. Leadership has recently transitioned to Prof Henry Houlden (Research Tissue Bank) and Dr Sara Trompeter (Rare Diseases), the Centre is hosted by University College London Hospitals Trust (UCLH) in partnership with UCL.
Patients are mostly recruited through clinics across North London, via UCLH NHS Foundation Trust, including the National Hospital for Neurology and Neurosurgery, the largest dedicated neurological and neurosurgical hospital in the UK. Research themes cover a variety of areas, with neurological and haematological conditions being areas of specific focus.
PPIE activity to raise profile of NIHR BioResource and drive volunteer recruitment
Over the past year, following the pandemic and the resulting disruption to usual business, the Centre UCLH team have been able to reinvigorate their engagement with clinicians and patients at a number of UCLH sites to recruit new participants. They have placed a focus on developing Public and Patient Involvement and Engagement (PPIE) activities within their local community to reach the multicultural communities living in North Central London.
As part of this plan, they have reshaped their team and the Centre will be conducting an education campaign to raise awareness and understanding of the BioResource among doctors, nurses, and phlebotomists.
Olympia Amoo, a Senior Clinical Research Nurse, has recently joined the team and will be a key part of activities going forwards.
Describing her excitement at beginning work with their BioResource team, she explains:
“My passion for the NIHR BioResource project comes from working closely with patients who may benefit from research.
“This also builds on my personal experience of taking part in a research study that saved my life.
“Being a part of something so important for the future of health outcomes is one of the most rewarding feelings.”
When patients understand the value that participating in initiatives like the NIHR BioResource can bring, they are more inclined to participate. To help improve patients’ and healthy volunteers’ knowledge about the BioResource, the team are preparing new content and campaigns that will bring this to life.
Rhonda Henley-Smith, Manager of the NIHR BioResource Centre UCLH, explained:
“Refreshing our approach to comms and recruitment campaigns will enable us to grow as a centre, achieve our participant recruitment goals and be successful in reaching the most underrepresented groups in medical research.”
How data from the NIHR BioResource Centre UCL is being used
There is a rich variety of phenotype and genotype data available for participants in the NIHR BioResource. The ability to invite participants based on these data for joining approved and impactful research studies is one of the many unique aspects of the initiative. As part of the Centre’s planned activities, they will be working to help local researchers understand the potential of the NIHR BioResource in supporting their studies.
Their Principal Investigators, Dr. Sara Trompeter, Consultant Haematologist UCLH and NHS Blood and Transplant (NHSBT), and Professor Henry Houlden, Professor of Neurology at UCL, have a particular research focus on haematology and neurology, respectively, and some of the first planned research projects will be focused in these areas.
Looking to the future
Located in North Central London, UCLH's catchment area includes a diverse array of patients with varied demographics.
One area of focus for the future will be reaching African and Caribbean patients with more information about the NIHR BioResource so that we can increase their recruitment. Key to this will be helping patients to understand the benefits that their participation will bring and the practical steps to joining up.
The team are already working on steps to streamline the communications and recruitment process within their Trust, including moving some information sharing onto the EHRS Patient portal (MyChart) that patients use to access information about their care and treatments, and can interact directly with their care and research teams.
Alongside this, equipping medical staff with knowledge and resources about genomic medicine and the role of the NIHR BioResource in this will help to bring more people on board.
Two Research Assistants, Sarah Boughetane and Rachael Fakile, have been an integral part of the project and their knowledge and experience will continue to support the growth of the NIHR BioResource via the Centre as they enter this new phase.
“I take great pride in my active involvement in national research, collaborating with prominent institutions like the NIHR and NHS.”
Rachael described her motivations:
“I am glad to be able to inspire patients and healthy volunteers to take part in research to improve our understanding of diseases and have an overall better outcome for healthcare.
“I am grateful to be part of a profession that delivers quality care through evidence-based practice, advanced technology and dynamic research; thereby contributing to the health and wellbeing of patients and the population at large.”
As the team ramp up their activities, they will be collaborating with other initiatives run by UCLH and local community organisations to further expand reach and recruitment of volunteers into the programme.
Get in touch with the team
You can get in touch with the NIHR BioResource Centre UCLH team via email at firstname.lastname@example.org or call on 020 3447 2248.
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