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Patients to set agenda for heart failure research

Press release issued: 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 today (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 heart failure.

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 study website and the results will be available on the website in 2019.

This work is funded by the National Institute for Health Research (NIHR) School of Primary Care Research.

Further information

About the Centre for Academic Primary Care

The Centre for Academic Primary Care (CAPC) at the University of Bristol is a leading centre for primary care research in the UK, one of nine forming the NIHR School for Primary Care Research. It sits within Bristol Medical School, an internationally recognised centre of excellence for population health research and teaching. Follow us on Twitter: @capcbristol.

About the National Institute for Health Research 

The National Institute for Health Research (NIHR): improving the health and wealth of the nation through research.

Established by the Department of Health and Social Care, the NIHR:

  • funds high quality research to improve health
  • trains and supports health researchers
  • provides world-class research facilities
  • works with the life sciences industry and charities to benefit all
  • involves patients and the public at every step

For further information, visit the NIHR website www.nihr.ac.uk

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