Involving people with advanced heart failure in setting the research agenda

Rachel Johnson

 

 

by Dr Rachel Johnson, GP and NIHR Clinical Researcher in Primary Health Care, Centre for Academic Primary Care, University of Bristol

Together with colleagues at the Universities of Bristol, Oxford, Birmingham, Cambridge and Lancaster, I recently completed a James Lind Alliance Priority Setting Partnership for advanced heart failure, funded by the NIHR School for Primary Care Research.

Priority setting partnerships (PSPs) are an established method for involving patients and the public in the first, crucial stage of research – deciding which research questions should be tackled by research studies. The results have just been published in BMJ Open Heart and include a list of the final top 10 priority research questions.

Briefly the process involved:

  • conducting a survey to elicit priority questions from a wide range of stakeholders, including patients, carers and clinicians
  • excluding questions that had already been addressed in the literature
  • ranking the
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Involving advanced heart failure patients in shaping research questions: A Priority Setting Partnership

 

by Dr Rachel Johnson, NIHR Clinical Lecturer in Primary Health Care, Centre for Academic Primary Care, University of Bristol and Anna King, NIHR Health Protection Research Unit in Evaluation of Interventions at the University of Bristol

 

Our Priority Setting Partnership (PSP) began as the idea of a group of doctors who have witnessed how difficult the experience of heart failure can be for patients and their families. Heart failure is one of the commonest causes of unplanned hospital admissions, and it can place a heavy burden on carers and families.

Our aim was to put the needs of patients, carers and health professionals at the heart of the research agenda. We followed the methods of the James Lind Alliance Heart (JLA), a not for profit organisation set up to ‘open up discussion between patients and clinicians to agree on priorities for future research.

The PSP … Read more