Pinpointing priorities for kidney data research

Research Project Manager Ross Forsyth gives us a rundown of the Kidney Data Science Catalyst’s latest workshop, taking steps to identify the most pressing issues in kidney data research.

The train home after a busy day of workshopping can often be a tedious affair – I’ve spilled coffee on my shirt, it’s very warm and the train carriage has a higher population than the tiny village that I live in. 

But this trip felt different. I’m optimistic, reminding myself that the work we did today could lead to real improvements in the health outcomes for some people I’m sharing this busy carriage with. 

Today was a significant milestone for our Kidney Data Science Catalyst. In partnership with Kidney Research UK, we brought together leading nephrologists, clinical academics, researchers, and patient and public representatives to discuss priorities for kidney data science. 

This was the second stage of the BHF Data Science Centre’s Kidney Data Science Catalyst Delphi exercise. Our aim was to allow the gathered experts to explore the key questions that could deepen our understanding of how cardiovascular and renal health intersect and how we can prevent cardio-renal diseases or improve outcomes for those living with cardio-renal diseases. 

Setting the scene

Speakers with expertise in the areas identified in our initial survey provided a background to the key issues and allowed delegates to consider the themes that emerged from the first stage of the process. 

We then broke into six groups, where facilitators gathered more insights from delegates on the emerging research priorities.  

My initial observation from the workshop was that data was at the heart of every conversation; what data is available? How can we standardise data? How do we make data more accessible to the right people? What data could be linked and what are the ethical and governance considerations of this? Issues that the BHF Data Science Centre grapple with across all of our areas of work. 

The patient voice

Patient and public contributors played an essential role at the workshop, grounding our discussions in the realities of lived experience. Their input reaffirmed the importance of transparency, data security, and real-world applications of research. 

We now have the considerable task of digesting the contributions of the group into a second prioritisation survey. The work will be summarised in a publication which will be drafted before the end of the year. Following this, we’ll identify driver projects that will help us to address some of the priorities identified by the exercise. 

So as we approach the final stop on my train I’m reminded of the words from one of our speakers: “the wind is in our sails”. Based on the enthusiasm in the room, it feels like this is very true, and I hope that today’s event will help us increase the accuracy of our navigation tools.