Setting the research agenda in advanced heart failure
7 July 2020
Infections & acute care Public engagement & involvement
Dr Nick Jones, Wellcome Trust Doctoral Research Fellow, writes about the Research Priorities in Advanced Heart Failure project, which has now published its top 10 priorities for the research community.
Hundreds of people across the UK have had their say on what the priorities should be for future research into advanced heart failure. This includes people with heart failure, their carers, healthcare professionals and members of the wider public.
The work has been taking place using The James Lind Alliance (JLA) Priority Setting Partnership approach, an established and systematic method to engage with a wide range of stakeholders and determine research priorities. The JLA approach is important because it gives the people most affected by heart failure and those healthcare professionals directly involved in their care a voice, which might otherwise not be heard.
A team from the University of Oxford Nuffield Department of Primary Care Health Sciences, including Dr Clare Taylor, Professor Richard Hobbs and Dr Nick Jones, have been working with researchers from the Universities of Cambridge and Bristol on the project, with funding from the NIHR School for Primary Care Research. The project is also supported by the heart failure charity, Pumping Marvellous.
The JLA process establishes a core steering group, who guide the process through a series of national online and postal surveys, targeted at key populations. A systematic reviewer helps filter research priorities where the existing evidence remains uncertain and these are carried forward into a final day long consensus meeting of representative stakeholders.
Interestingly, although a final list was agreed amongst the whole group, initial priorities were markedly different for patients and their carers compared to healthcare professionals, highlighting the importance of incorporating different perspectives in setting a research agenda that is meaningful to the wider heart failure community.
The final top list of 10 research priorities in advanced heart failure are:
1. Which treatments have the biggest impact on the quality of life of people with advanced heart failure?
|2. What amount and type of exercise is safe and effective for people with advanced heart failure?|
|3. What is the most empowering and effective education and self-management advice for people with advanced heart failure and their carers? (e.g. dealing with fatigue)|
|4. How can the work of heart failure charities be better integrated with NHS services to optimise the care of people with advanced heart failure?|
|5. Which approaches, in addition to standard therapies, are effective in supporting breathlessness in people with advanced heart failure?|
|6. How do we break down barriers for patients with advanced heart failure, carers and health professionals to enable talking about end of life care?|
|7. What are the benefits of asking a person with advanced heart failure ‘what is important to you’?|
|8. What is the most effective way to use diuretics in advanced heart failure, with respect to fluid overload, kidney function, survival and quality of life?|
|9. How can advanced heart failure patients and professionals be helped to communicate about symptoms that are difficult to express such as anxiety and low mood?|
|10. What support would be most effective for carers of people with advanced heart failure? (e.g. support groups).|
The full details of the process and results have been published in the cardiology journal, OpenHeart and are available at - https://openheart.bmj.com/content/7/1/e001258
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Asking the public about what Heart Failure research to do is useful, but expensive. Clinicians & Academic Professors are best placed to adequately decide research priorities. Maybe it is time to critically evaluate how money is spent, & possibly wasted, in Clinical & pre-Clinical research.