Establishing research priorities to improve the management of patients with advanced heart failure using the James Lind Alliance method.

Heart failure affects 1-2% of the adult population and up to 1 in 10 older people in the United Kingdom. People with heart failure may be well for many years after diagnosis however in the advanced stages of the disease they often have worsening symptoms and increasing needs.  For example they may need more medication, increased support from carers, and admissions to hospital. Increasingly, it is recognised that involving people affected by a condition in identifying research priorities is important; this helps ensure that research findings are relevant.  Through this project we will work with patients with heart failure, their healthcare professionals and carers to develop a ‘Top 10’ list of research priorities for patients with advanced heart failure.

The Universities of Oxford, Bristol and Cambridge will work together to establish a Priority Setting Partnership (PSP) following the methods set out by the James Lind Alliance (http://www.jla.nihr.c.uk/).  A steering group of people directly affected by, or caring for, people with advanced heart failure including patients, carers and clinicians will oversee the project.  The steering group will develop an online survey to collect research questions.  The survey will be distributed to a broad group of stakeholders (including patients, carers, and healthcare professionals) through the steering group’s networks such as healthcare clinics and relevant charities.  The survey results will be checked against existing evidence to see which of the suggested questions have not yet been answered by research.  Stakeholders will be asked to rank the unanswered questions.  The highest ranking unanswered questions will be discussed at a final workshop with 30 stakeholders who will draw up the final ‘Top 10’ priority list.  These priorities will be communicated to researchers and funders to make sure that future research answers questions that are important to patients and clinicians.  

Joint applicants: Dr Clare Taylor, Dr Alyson Huntley, Prof Gene Feder, Prof Richard Hobbs, Prof Jonathan Mant.