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Sally Crowe and Kristina Staley reported on an evaluation of the JLA PSPs at the AMRC & NIHR Impact Coffee Club on 4 February.

The project evaluated how the PSPs - with 100 completed projects to date - transform research, people and organisations. The purpose of 'James Lind Alliance Priority Setting Partnerships' programme was to agree shared priorities for research through an inclusive, equitable, transparent and evidence based approach.

Objectives of the evaluation included to: identify examples of success and impact; to develop case studies; highlight the challenges faced by teams; and recommend practical approaches and best practice. With these in mind, the review team convened an advisory group and conducted 20 interviews with researchers with the following outcomes:

Positive impacts

  • Well matched culture and values of PSP organisations with that of JLA
  • A culture of collaboration with partners is developed post-PSP 
  • Where a small research community became well-networked as a result
  • Where there was a champion who had influence and who advocated for the priorities with funders and researchers.

Broader impacts

  • More public involvement in research
  • Increased collaboration across departments in same organisations, as well as across sector/organisation
  • Increased profile of the health area being researched

Impacts on people

Clinicians: A change in practice, developed skills, supported in professional development

Patients: A change in PPI practice, personal empowerment, further commitment to research

Limited impact

  • Where tensions arose between experts and patients
  • Where there was limited ownership of the priorities
  • Lack of dedicated resource to follow up work

Reflections

The JLA was created to challenge the current ways things stand in health research and to introduce the concept of shared research agendas. There was continued tension between developing research questions and who's decision it is to make/finalise them, with scientific rigor and reliability taking precendence over the relevance of the research and utility of the findings.

A summary of the final evaluation report can be found in these slides: 'More than a top 10'

SPCR funded PSP

With SPCR funding, PI Rachel Johnson and researchers at Bristol, Cambridge and Oxford collaborated on one of the priority setting partnerships to look at the needs of healthcare practitioners, carers and patients of advanced heart failure.

In the news:

Patients to set agenda for heart failure research

Blogs: 

Involving advanced heart failure patients in shaping research questions: A Priority Setting Partnership

Setting the priorities for advanced heart failure research

ABOUT THE PROJECT

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.