World Heart Day on 29 September 2022 aims to inform people that cardiovascular disease, including heart failure and stroke, is the world’s leading cause of death, claiming 18.6 million lives each year. It also aims to highlight the actions that individuals can take to prevent and control heart disease. Alyson Huntley describes how researchers at the Centre for Academic Primary Care are refocusing priorities to ensure that the needs of people living with heart failure are at the centre of their work.
We aim to put people with heart failure at the centre of our research. A recent collaborative project with other universities highlighted the unmet needs of people living with heart failure. The priority setting process brought clinicians, patients and families/carers together on an equal footing to identify and prioritise evidence uncertainties that could be answered by research. Our James Lind Alliance Priority Setting Partnership (JLA PSP) produced priorities for research, of which nine of the top 10 focused on the personal – quality of life, exercise, education, how to deal with fatigue, breathlessness, anxiety/low mood, input of charities and the role of support groups.
This challenged us at Bristol to continue to work with people with heart failure to address these gaps. We were awarded National Institute for Health and Care Research (NIHR) funding to look at heart failure-related fatigue, and how to support physical activity for people living with the condition.
We are championing the concept of ‘The People Era’ – refocusing heart failure research on patients and their families – following previous descriptions of heart failure research as ‘The Pharmacologic Era’ (‘80-‘90s) and ‘The Devices Era’ (‘00s). These earlier decades of research delivered great advancements in treating the progression and symptoms of heart failure, but we must not take our focus off individuals living with the condition. Only four (16%) of the top 25 research priorities from the JLA PSP related to drugs, devices and digital health.
The HAPPY (Heart Failure and Participation in Physical Activity) Study is looking at how to support people with heart failure to do the amount and type of physical activity that is right for them. It is a collaboration with clinicians from general practice, nursing and secondary care, and NHS Bristol, North Somerset and South Gloucestershire Integrated Care Board. We have a large patient group working with us and have charity involvement from Pumping Marvellous.
The first step in the study is to conduct a systematic review of evidence on the thoughts and experiences of people with heart failure around physical activity and publicly available information (for example from heart failure charities) about physical activity. The aim is to form a blueprint for a future intervention or approach for supporting people with heart failure.
Based on our previous experiences, we plan to address equality, diversity and inclusion (EDI) considerations in our research, using both an established and newly developed EDI systematic review tool. This additional piece of work, EDI thinking (EDIT), embedded within the HAPPY study, has been funded by the Elizabeth Blackwell Institute and Wellcome Trust Institutional Strategic Support Fund awards. We expect results from the study to be available in 2023.
We hope that our research, driven by the JLA PSP priorities, will be the springboard for a new ‘People Era’ in heart failure research.
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