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Patients to set agenda for heart failure research

13 June 2018

People with advanced heart failure, their carers, families and friends are being asked to help set the priorities for future research into the condition. Researchers from the Universities of Bristol, Oxford and Cambridge are working with the James Lind Alliance - a non-profit organisation which looks for unanswered health research questions by reaching out to those most affected - to identify research questions that will focus on improving advanced heart failure care.

Heart failure affects one in 50 adults in the UK.  It places a heavy burden on both patients and their families which often increases with time. A person with advanced heart failure experiences symptoms such as breathlessness and tiredness. It can stop them from getting on with their lives, requires taking lots of medicines and can involve going into hospital.

The group is launching a survey on 13 June, which invites people who are affected by advanced heart failure to send them the most important questions that they want answered by research.

The invitation is for patients with advanced heart failure, their families and friends, as well as health and other care professionals who look after them.

The results of the survey will help guide researchers to focus on the needs of people living with advanced heartfailure.

Dr Rachel Johnson co-lead of the project, a GP and Research Fellow at the University of Bristol’s Centre for Academic Primary Care, said: “Advanced heart failure can cause great difficulties for patients and their families. It can affect all areas of their lives. For health and other care professionals it can also be challenging to provide the very best care for these patients. It’s crucial that research answers the questions that these people most want answered, and this project aims to identify what these are.

“Once the priorities have been set, they will be shared widely with researchers and funders so that they can have the biggest impact on advanced heart failure research in the future.”

More information and a copy of the survey are available from

The results will be available on the website in 2019.

This work is funded by the NIHR School of Primary Care Research.





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