Involving advanced heart failure patients in shaping research questions: A Priority Setting Partnership

Our Priority Setting Partnership (PSP) began as the idea of a group of doctors who have witnessed how difficult the experience of heart failure can be for patients and their families. Heart failure is one of the commonest causes of unplanned hospital admissions, and it can place a heavy burden on carers and families. Our aim was to put the needs of patients, carers and health professionals at the heart of the research agenda. We followed the methods of the James Lind Alliance Heart (JLA), a not for profit organisation set up to ‘open up discussion between patients and clinicians to agree on priorities for future research.

The PSP was funded by the NIHR School for Primary Care Research and supported by the JLA. We asked patients, carers and health professionals to suggest the key questions that need addressing in heart failure research in one survey, and to prioritise the questions in another survey. At a final workshop, stakeholders debated the top 25 questions and reached agreement on the Top 10 priorities. In a PSP, patients are members of the project steering group, overseeing the whole project, taking part in key decisions for example the project scope, and helping to publicise the surveys. Through the surveys and the final workshop patients contributed directly to the research agenda. Although the PSP process includes patients at all stages, we anticipated that patients who felt comfortable to sit on the steering group might not represent the wider patient group, in part because patients with heart failure may be frail and find the demands of steering group membership a challenge. As one of our patient steering group members told us:

It’s not easy for patients to jump in at the deep end and exchange views and ideas with a bunch of professional medics and academics

Anticipating this, we convened a PPI group to advise us at key stages of the PSP. Finding patients for the group was challenging; members were identified through a local heart failure support group or by GPs. The PPI group members were 7 patients and carers whose main role was to help us develop the survey questions by commenting on the readability, ease of understanding and use of the survey; in addition some group members contributed to the final workshop.

We learned general lessons for future PPI projects: the need for plain English in documents; to be clear about the aims and outcomes of the PPI group; and to agree to pay PPI members (we used high street vouchers). There were also lessons for involving people living with heart failure:

• Be aware that heart failure patients can be very frail; provide refreshments, breaks and accessible facilities
• Members may not attend all meetings due to illness or medical appointments, and may find some times difficult (many of our group needed to sleep in the afternoons)
• Think carefully about the terms used:  heart failure was an upsetting term for some and advanced heart failure needed definition

Involving patients in survey design helped us to produce an accessible and understandable survey  in order to develop relevant and timely research questions.  The PSP process revealed that there were clear differences between the priorities of health professionals and those of patients. The outcomes of the PSP are currently being prepared for publication.

A final word from our patient steering group member:

All I can say is that it’s worth it because the medics and researchers actually want to know what it’s like being a patient or a carer. They don’t usually have the direct experience of the symptoms, side-effects and circumstances of their patients…

On behalf of the Advanced Heart Failure Priority Setting Partnership Steering Group

This project was a collaboration between University of Bristol, University of Oxford, and University of Cambridge and funded by the NIHR School for Primary Care Research.