Putting patients at the heart of research
‘It’s not just about academics and a spreadsheet, it’s about real people’
When large scale medical research projects begin, patients can sometimes get lost in the numbers but one five-year long study run by the University of Bradford and the University of Leeds aims to address this problem.
ISCOMAT is a £2m research programme that began in 2016 to look at ways of improving the lives of heart failure patients once they have been discharged from hospital.
The study still has some way to run before the findings are published but patients involved in the research have helped produce a video in which they praise its inclusive approach.
The short video includes first-hand testimony from patients who have been giving advice about a clinical trial running in 43 hospitals. Their experiences helped inform how the study was designed and greatly benefited the research team.
Jan Speechley, administrator on the ISCOMAT project who worked with the patients to make the film, from the School of Pharmacy and Medical Sciences, said: “In the film, we try to relay what actually happens to real people when they engage in research projects. This has several benefits, one being that it gives a unique patient perspective. Additionally, if others are considering giving their time to work on such projects, this shows what help they can expect.
“It’s also a way for patients to give something back to a process from which they have benefited. Their experience is very useful. What we hope this video shows is it’s not just about academics and a spreadsheet, it’s about real people.”
Making a difference
ISCOMAT is funded by the National Institute for Health Research (NIHR) and involves academics, patients, the NHS and the NIHR Clinical Research Network. Its objective is to look at and improve how patients with heart failure are supported with their medicines at points of NHS care transition, such as when they move from hospital to home. When this transition happens it is important to have good communication between patients and all their care providers.
Dr Beth Fylan, Senior Lecturer in Patient Safety in the Faculty of Life Sciences, said it was crucial to involve patients in the study so that their experience could improve how they designed, conducted and promoted the research.
“The video is about explaining how patients became part of our research team and made a difference to the research, which aims to improve outcomes for people with heart failure once they are discharged from hospital through better managed medicines.
“We have a patient-led steering group, which helps us inform our research by giving us feedback on various aspects of it, like how to ask the right research questions, communicate with the public or improve data collection. It’s really important for health research to do this well as the results of our work will potentially change how care is given.”
She added: “We hope this video will benefit other researchers and also any patients considering joining such a project.”
Dr Hanif Ismail, a Research Fellow at the University of Bradford, said the project was the culmination of a great deal of hard work.
“As part of the Medicines Optimisation Research Group, our team has a great deal of expertise in this area and that’s one of the reasons we were awarded this grant. It is the culmination of a great deal of work. Trials have taken place all over England, from Exeter to Northumbria.”
Nick Hartshorne-Evans, CEO and Founder of the Pumping Marvellous Foundation and a member of our Patient-Led Steering Group, took part in the film. He said: “Patient input into research is crucial precisely because today’s research is tomorrow’s care.”
Dr Jonathan Silcock and Professor Peter Gardner, ISCOMAT co-Chief Investigators, agreed that the contribution of patients has been of crucial importance throughout the project.
Dr Silcock said: “Patients have been involved in every stage of this programme from writing the application to mapping patient pathways, then designing and testing an intervention. They have helped to make sure that everything we do is focused on patient care and improving satisfaction with treatment. I’d also like to thank our colleagues in the Clinical Trials Research Unit, University of Leeds, for ensuring the intervention was rigorously tested.”
The study, which is due to finish in 2022, will make recommendations to improve patient care around hospital discharge.
- Heart failure is responsible for approximately 5% of medical admissions and the hospital readmission rate within three months of discharge has been estimated as being as high as 50%
- ISCOMAT aims to help the way patients are supported with their medicines - it has been testing a ‘Medicines at Transitions Intervention’ to help with the transition of patients from hospital to home
- Part of the research involved conducting a trial across 43 NHS Acute Trusts in three regions, involving 1,641 patients
- The trial was funded by £2m from NIHR and will deliver its results in 2022