This week sees the launch of the James Lind Alliance Advanced Heart Failure Priority Setting Partnership Survey to gather research ideas from those living or working with advanced heart failure.
The clinical academic’s view
When, alongside clinical academic colleagues, I began to think about setting up a process to establish the top research priorities for heart failure, I was intrigued by the thought that I had no idea what people living with heart failure would choose as their priorities.
As a doctor interested in heart disease, I have worked with many people who have heart failure. I feel I have a good sense of the medical aspects of the condition, and, to some extent, the patient experience. And yet, when I thought about what patients and their families might identify as the main problems that research should address, I really couldn’t guess.
The idea for setting up the partnership came from a small group of doctors who have witnessed how difficult the experience of heart failure can be for patients and for their families. In our work we felt that the people with heart failure whom we saw regularly did not seem to be represented in the research.
Our patients are typically older, and managing several long-term health conditions at the same time. By contrast, most research into heart failure concentrates on younger patients. We wanted to redress this by involving people with heart failure in setting the research agenda. We chose to focus on people whose heart failure affects them on a day-to-day basis, and this became part of our definition of ‘advanced heart failure’.
Traditionally, research priorities have been set by researchers and funders. In recent years there has been increasing recognition that involving patients in research – from the beginning stages of deciding what to research and how to research it – to the later stages of sharing the results – leads to better quality research which is better able to be applied.
The Advanced Heart Failure Priority Setting Partnership (PSP) is a collaboration between the James Lind Alliance, and the Universities of Bristol, Oxford and Cambridge. The James Lind Alliance is a not-for-profit organisation, which aims to ‘open up discussion between patients and clinicians to agree on priorities for future research’. To achieve this, it has developed a transparent method for collecting and prioritising ideas from those for whom the research results are most important.
Our first step was to set up a steering group to lead and oversee the process and develop the survey. The steering group includes people living with heart failure, carers, doctors, and nurses. The survey has been piloted and tested, and is now available online. We felt strongly that an easy-read version should be available and are grateful to have had the support of Bristol Community Health to develop this. The easy-read version is available alongside the main survey.
We are still at the early stages of our PSP, and I am excited to find out what people will suggest to us as research ideas. The next challenge is to get as wide a range of people with heart failure as possible to complete the survey, as well as the people who live with and look after them. If you can help, please let people know about our work. We look forward to hearing your views.
Share the survey link.
The patient’s view
John is a member of our steering group and shared his views on the PSP with me for this blog:
About four years ago I was diagnosed with heart failure via a blood test. I’ve had heart problems since about the year 2000. I felt, as many people do, that the term heart failure is a misnomer. It sounds terminal and uncopeable with. In a sense, I wanted to be part of something to show that heart failure can be coped with. I’ve been fortunate with the treatment I’ve received, so I wanted to give something back and help the system get to sufferers so that they could feed back information to the researchers and clinicians on how better to serve the needs of heart failure patients.
I like the idea of going to the end user and seeing what the outcomes of a particular system and set of processes are, as received by the recipients, and saying “ Well, the outcome is this, the intention might have been that but the outcome is this, and it’s not quite what we need”, and feeding that back into the system so the system can be improved. I’ve discovered from the steering group that people with heart failure may not get what they need to meet their physical, emotional and psychological needs.
If you mention heart failure, people mentally take a step back and think “oh gosh that sounds really bad”. You can mention it in an environment when you’ve got people with other heart conditions – they understand and are not shocked – but with some people, perhaps, you are reluctant to say that you’re suffering from it. It’s a bit like cancer, one’s reluctant to mention it because of the term.
I think it’s very important to involve the end user, because they are the people for whom the system is supposed to be working and if there are problems, those systems need to be improved.
I think the whole process is very inclusive. I think the care taken in making the process as inclusive as possible and as ethical as possible is good. It’s stimulating. I learn more. It gives you a bit of insight and information that helps you with your own condition. You’re more in the know and that helps you when you meet your own doctors and consultants on regular trips to appointments.
For more information about the James Lind Alliance Advanced Heart Failure PSP, visit the project website.