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1 April 2017 to 30 September 2018

Project No: 368

Funding round: FR 13

Advanced Heart Failure Priority Setting Partnership

Heart failure (HF) affects 1-2% of the adult population and up to 1 in 10 older people in the United Kingdom. People with HF may be well for many years after diagnosis however in the advanced stages of the disease they often have unpleasant symptoms and need more help to manage their condition which may mean more medication, increased support from carers and sometimes unplanned admission to hospital. 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 HF.

The Universities of Oxford and Bristol will work 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. A steering group of people directly affected by advanced HF including patients, carers and clinicians involved directly in HF care will oversee the project. An initial online survey will determine what the priorities for advanced HF 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 HF charities and local NHS trusts. The survey results will be checked against what is already known about HF 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 advanced HF patients in the future.

Amount awarded: £41,728