Julian Meldrum: Nurturing patient participation in cohort research

At the BHF Data Science Centre, we involve members of the public affected by heart and circulatory disease in all our work.

Last year four public contributors helped us to develop the UK Clinical Cohorts (UK CliC) Trusted Research Environment (TRE).

They highlighted the importance of providing patients with accessible information, so members of the public can understand what a TRE platform is, how patient data is kept secure, and who can access this data via a TRE. 

Since then, our public contributors have begun exploring how to create a process to ensure the cohorts who wish to use the TRE are trustworthy, safe, and have a clear benefit to patients and the public. 

Here Julian Meldrum, one of our active public contributors, talks about his recent experience meeting one of the first cohort users of the TRE and next steps for this important area of work. 

Julian’s blog

In January, I and other public contributors working with the BHF Data Science Centre Cohorts team met with two representatives of the National Unified Renal Translational Research Enterprise (NURTuRE), which is one of the first users of the UK Clinical Cohorts (UK CliC) Trusted Research Environment (TRE).

This TRE aims to provide clinical cohorts with a safe, secure, and privacy-preserving way to store, link, and share their data with trusted researchers. This helps them to access cohort data, makes the linkage process more efficient, and speeds up important health research.

NURTuRE is a national biobank supported by Kidney Research UK, with more than 266,000 stored blood and urine samples from 3000 patients with various chronic kidney diseases and 740 with idiopathic nephrotic syndrome. These are conditions for which treatments are limited, come with a heavy burden on patients, and are costly to the NHS – and which often overlap with heart and circulatory disease.

Through aortic disease support groups, I’m aware that cardiothoracic surgery (surgery that treats disease of the heart, lungs and other organs) can cause acute kidney injury (AKI), landing people in intensive care and significantly shortening their lives. So, I was very interested to learn that NURTuRE’s next aim is to recruit a cohort of surgical patients – adults and children – for research on AKI.

The conversation with NURTuRE covered lots of topics: the importance of the dataset, how it will be significantly enhanced by linking to health records, and how the team have reviewed the cohort’s study documents to ensure the data is being handled in line with participant consent.

What impressed me throughout is how seriously NURTuRE is taking the need for active participation by patients to inform the project and to ensure transparency and accountability. They are already including patients – notably children – who have too often been excluded from medical research, delaying and limiting access to life-changing treatments.

The UK CliC TRE have worked closely with the SAIL databank to ensure the data relating to NURTuRE is handled appropriately and that participant’s rights are respected at each point in the process. We’re looking at how to check, support, and learn from their approaches to patient and public participation, building on work already done in COVID-19 research.

We will now work together to develop processes that help us decide if it’s appropriate to onboard more cohorts in the future. Whether we can spend as much time with each project as we have with NURTuRE is an open question. However, the constructive dialogue in this meeting confirms there’s already a community of interest pulling in the same direction across a big range of health conditions. And now we have examples of really good practice to draw inspiration from, our main task will be to make sure participant wishes are always respected throughout the process.

For more information on NURTuRE, see here.