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Our partnership brings together those affected by advanced heart failure including patients, carers and clinicians to decide what research should focus on next.

We are forming a partnership involving patients, carers, charities, healthcare professionals and researchers to find out what is important in heart failure research for the most important people - those affected by the condition. Help us by completing our survey, promoting this research and sharing the results.

The importance of involving those directly affected by a condition in identifying research priorities to ensure the findings are relevant is increasingly being recognised. The aim of this project is determine a 'top ten' list of research priorities for patients with advanced heart failure.

The Universities of Oxford, Bristol and Cambridge are working together to establish a Priority Setting Partnership (PSP) following the methods set out by the James Lind Alliance – a charitable organisation committed to ensuring those most touched by a condition are involved in prioritising research.

The steering group includes those affected by advanced heart failure including patients, carers and clinicians involved directly in heart failure care. An initial online survey will determine what the priorities for advanced heart failure research should be. The members of the steering group will promote the survey through their ‘wider partner networks’ which include patient groups, healthcare clinics and through relevant websites such as heart failure charities and local NHS trusts.

The survey results will be checked against what is already known about heart failure treatment to see where there are gaps in knowledge. Priorities will then be sorted to generate a short list for discussion at a final workshop where a ‘Top 10’ priority list will be agreed. These priorities will be used by researchers to apply for funding to undertake projects which could improve care for patients with advanced heart failure in the future.

Our survey is open

 > Click HERE to take the survey.

How the James Lind Alliance Process works

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STAGE 1 - ESTABLISHING THE HEart failure PARTNERSHIP

A Steering Group is formed, bringing together patients, carers, charities, healthcare professionals and research experts. The steering group agree a protocol for the project, outlining what will happen and when. They also agree on management arrangements and identify further partners to reach as wide an audience as possible. 

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STAGE 2 – YOU SHARE YOUR VIEWS

No one understands heart failure better than the people who live with the condition or their families. The Steering Group will create a survey, using the James Lind Alliance guidance, to help understand which research questions these people as well as clinicians think are important to answer. 

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STAGE 3 - DATA MANAGEMENT

The project data management group will gather up all the survey results and sort the answers into research questions and themes. We will review what existing research is already done that might be able to answer some of the questions and prioritise questions where there is a lack of evidence. 

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STAGE 4 - INTERIM PRIORITISATION

 To check we've got the right message, the research questions we've created will be sent to survey respondents and partner organisations. Respondents will be asked to rank their top 10 unanswered questions and these will be combined to create a final shortlist. 

 

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STAGE 5 - FINAL PRIORITISATION

At the end of the process we will hold a workshop for those who have taken part and partner organisations. This will be a platform to promote the agreed final list of the top ten unanswered research questions. We will share these results as widely as possible to help them guide future heart failure research. 

Working with: University of Bristol University of Cambridge
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Funded by:

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