Get to know… The Governance and Ethics team at the NIHR BioResource

Who are they, what a day looks like in the team and everything involved in making our Governance and Ethics team one of the key resources as part of the NIHR BioResource!

Can you tell us the role of the Governance and Ethics Team at the BioResource?  

Our team ensures that the BioResource follows nationally recognised governance and ethics guidelines across its many and varied health research programmes running throughout the UK. This approach puts the BioResource participants centre-stage in our considerations, ensuring all work is done with their interests in mind.

This means working with the individual research teams to make sure that all relevant documentation has been submitted and reviewed by the Research Ethics Committee, and that we follow all the regulations and policies that apply to the research.

Although centrally based, we work across all the BioResource centres, liaising with scientists, doctors, nurses, solicitors, informatics and clinical data leads, project managers, laboratory staff, study coordinators, administrators and auditors.  

Governance and Ethics Team
Top row: Anne Walters, Anne George, Christine Chan, Svetlana Whittaker, Debbie Clapham, Sarah Marsden, Bottom row: Rose Eichenberger, Hila Apelbaum, Jennifer Gray. (Not pictured: Alessandra Barreto da Silva)
Alessandra Barreto da Silva
Alessandra Barreto da Silva

Can you tell us a bit about the importance of the Governance and Ethics team in the BioResource’s work? 

Before any research study can start, it has to be set up, which is where our team come in. We prepare and review study documentation, and submissions to the Research Ethics Committee, and open recruitment sites (at hospitals) and ensure contracts and local R&D approvals are in place. Our role is to ensure our research studies are undertaken in line with statutory and regulatory requirements, adhering to ethical guidelines and following the protocol. We have to resolve issues and answer researcher enquiries promptly and efficiently to ensure the smooth running of the vital work that researchers are carrying out. 

What does a regular day look like for the Governance and Ethics team? 

On a day-to-day basis we address queries and process research updates from researchers from multiple research groups (e.g. IBD, IMID) and hospital sites. We also ensure governance procedures are followed i.e. that information is handled in accordance with data protection regulations and other applicable regulatory requirements are followed, such as the Human Tissue Act and Good Clinical Practice. We ensure document control by monitoring and maintaining central indices such as the index of policies and procedures on the new eQMS, delegation logs and the contracts index.  

What other teams do you collaborate with at the BioResource?  

Most teams interact with G&E at some point. The teams we work most closely with include Rare Diseases, Operations, Samples and of course the R&D teams and the people in clinics and hospital departments doing the recruitment.  

What’s the most rewarding thing about working in your team?  

Working at the BioResource, we are really fortunate to work with a great team of people with great support. We’re always collaborating with colleagues or researchers to figure out a pragmatic approach to a problem or query. We recruit to a lot of different cohorts across the general population in both common and rare diseases so no two queries are exactly the same. One day you could be setting up a new NHS Trust to recruit people to a study, which involves contract negotiations and sharing lots of documents, the next day you could be preparing an amendment for submission to the Research Ethics Committee. 

What three words would you use to describe the Governance and Ethics team?  

Positive impact. Teamwork. Quality.  

What key areas and projects are you working on at the moment?  

We are currently supporting the set up and opening of six new BioResource centres and the newest cohort: IBHO - Improving Black Health Outcomes. We also supported the launch of D-CYPHR, a nationwide movement for ages 0 – 15 to help health research. 

Hands Holding Hands

What is the most challenging part of your role? 

Governance and Ethics is a complex area and the BioResource as a whole is changing and growing day by day. Liaising with so many teams at once and covering multiple projects can be a challenge at times, but it is a rewarding one as it is great to be able to support so much research and innovation. 

What exciting projects are on the horizon surrounding Governance and Ethics team?  

There is always something new. We are currently working in collaboration with Genomics England to incorporate an opt-in to their National Genomic Research Library for BioResource participants.  

We are also supporting a new campaign to improve representation in health research from diverse ethnic groups, aiming to address the health inequalities faced by so many in the UK. This will include opening multiple new Tissue Collection Centres across England. 

A huge thank you to the Governance and Ethics team for taking the time to talk to us about their fantastic work!

If you are interested in your team featuring in one of our "Getting to Know..." articles, please get in touch via email at: comms@bioresource.nihr.ac.uk we would love to hear from you!

Make sure to check out our previous articles on the Rare Diseases, Clinical Services and IBD teams.  

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