Involving people with advanced heart failure in setting the research agenda
30 June 2020
Together with colleagues at the Universities of Bristol, Oxford, Birmingham, Cambridge and Lancaster, I recently completed a James Lind Alliance Priority Setting Partnership for advanced heart failure, funded by the NIHR School for Primary Care Research.
Priority setting partnerships (PSPs) are an established method for involving patients and the public in the first, crucial stage of research – deciding which research questions should be tackled by research studies. The results have just been published in Open Heart and include a list of the final top 10 priority research questions.
Briefly the process involved:
- conducting a survey to elicit priority questions from a wide range of stakeholders, including patients, carers and clinicians
- excluding questions that had already been addressed in the literature
- ranking the remaining research questions collaboratively, and
- developing a top 10 list of priorities at a consensus meeting of stakeholders.
The process was both challenging and rewarding, and I am proud to see the results in publication. My hope is that, through this work, we can ensure that the voices of people with heart failure influence the research agenda.
A challenging process
The James Lind Alliance (JLA) PSP sets out a well-trodden path to prioritise research questions. In addition to the rigour of the process itself, a key strength of the JLA process was the support of our JLA adviser, who was on hand to help us navigate the JLA steps, and to help, at all points, to ensure that everyone’s voice was heard and none dominated.
We had a large steering group which included clinicians who were not researchers, and as project leads we stood back to ensure that the voices of non-research clinicians, patients and carers were heard. Research skills were crucially important for the literature review to ensure the questions that had already been adequately addressed by research were not included.
Making the process accessible to patients was essential and at times challenging. People with advanced heart failure can be unwell and frail and their physical needs had to be considered and taken care of throughout.
At times the PSP process was difficult to explain, with terminology that could be clunky. The paperwork that steering group members were required to read and complete, such as producing a biography, was off-putting to some without experience of similar roles. However, we had a separate patient and public involvement (PPI) group running alongside and they helped us address accessibility issues.
My research in heart failure to date has impressed on me that many people live with heart failure without fully understanding the condition, or even understanding that they have it, particularly if it is one of many long-term conditions they live with. The JLA process requires people to self-identify as patients or carers of someone with the relevant condition. This was a potential barrier to patients and carers being involved in the project.
Finally, despite a great deal of effort, we did encounter some difficulties in engaging particularly more elderly patients to complete our survey.
Reaping the rewards
Setting up the PSP, as heart failure researchers and GPs, we had in mind our patients in the community who typically have multiple health conditions, perhaps live with frailty and might not be under the care of secondary care services; that is, groups who are less well represented in heart failure studies. It has been hugely rewarding to have been able to give voice to these groups.
There is no doubt that Involving patients, carers and clinicians in the PSP has led to a novel set of research questions that might not have been considered otherwise. I am more convinced than ever of the need to include patient perspectives in setting research priorities, not least because, as our project has shown, they might differ markedly from those of health care professionals.
We may not have produced a perfect list of research-ready questions, but our top 10 does represent a clear manifesto for future research direction. We hope that both researchers and funders will take note.
Paper: Research priorities in advanced heart failure: James Lind alliance priority setting partnership. Clare J Taylor, Alyson L Huntley, John Burden, Amy Gadoud, Toto Gronlund, Nicholas Robert Jones, Eleanor Wicks, Sara McKelvie, Kit Byatt, Richard Lehman, Anna King, Bev Mumford, Gene Feder, Jonathan Mant, Richard Hobbs and Rachel Johnson. BMJ Open Heart. Vol 7, Issue 1. 30 June, 2020.
I am very grateful to all who contributed to this project, and in particular to the people with lived experience, carers, and healthcare professionals and others who support people with heart failure.