Case study: Wessex researchers trial educational tool designed to empower patients to manage their kidney health

“My specialism is in renal health and I became a research fellow in November 2020.  It has been my first involvement with research and I definitely see it being part of my future career.

“Renal research is important because chronic kidney disease (CKD) is really complicated, especially as it progresses. It’s complicated enough for clinicians so for patients to understand it, it's really hard work.

“There are a lot of things that patients can do themselves to slow the progress of the disease, for example there are a lot of considerations with diet. One of the most common questions I get is ‘what should I eat?’ but I’m afraid in a short consultation, I can’t provide all the information needed and specialist dieticians can take time to access.

“This is where the Wessex-supported SMILE-K study could prove powerful. It’s looking at a new technology-based education tool for patients with chronic kidney disease. It’s based on something that already exists for diabetes called MyDesmond which has been successful.

“The app and browser-based system aims to help patients increase their understanding of CKD and learn how to manage it themselves. The model is information-based rather than gamified and includes sections where you can record things like your blood pressure and weight so you can track your health markers.

“This app goes quite a long way towards giving them advice on things that we just can’t give in the clinic, I think it fills that gap.”

“It has been a bit of a challenge to engage some of our older patients with the technology side of things, although age is just a number. My highlight so far has been asking one of our oldest participants if they’d like to take part, they got their iPad out straight away and said ‘yeah I’ll just do that, that’s not a problem!’.

“There is a knowledge gap as to whether making lifestyle changes at an early stage of CKD can make an impact. Obviously we don’t know the results of the study yet, but I’d be surprised if there wasn’t a positive outcome. Hopefully it will help us to bridge this knowledge gap and better equip patients to make better lifestyle choices.”

The NIHR-funded SMILE-K study, which is sponsored by the University of Leicester, has been running at sites across the Wessex region.

“I’ve been supporting the study at  Dorset County Hospital and University Hospital Southampton, and we’re hoping to recruit 20 participants at each site. I’ve enjoyed working at both trusts. It is a long way to Dorset from home but they’re a close knit team and have very straightforward communication which helps them work well together.

“Another positive of working across different sites has been seeing the opportunities for cross-Wessex working. I’d definitely say there’s room for more collaboration between teams in Wessex which is exciting.

“The highlight of my fellowship has probably been contributing to the COVID-19 studies, including PROTECT-V, RECOVERY, ACCORD-2, SPRINTER and the other myriad of trials we had running in early 2021. I felt very proud of the team of nurses, doctors and healthcare support workers involved in recruitment to those trials and bringing real world results to something we know very little about, in real time, was exciting.

“We managed to get a paper together about acute kidney injury during the COVID-19 pandemic as well which was published around that time. That was gratifying as well, it felt like everyone was pulling in the same direction which was a highlight.”

“At the end of my fellowship in August, I’m planning to take two more years out of being a renal registrar to do an MD looking at health related quality of life in patients with CKD. It’s a population based study and we will be looking at health inequalities too. Another thing I’ve been getting involved in over the years is data science, so the other part of my job will be a data science fellowship. I will essentially be learning the trade so that when I’m a consultant, I will continue a career in research with a slant towards population health, CKD and data science.”

To find out more about studies in your area, visit bepartofresearch.uk.