About the PSP

Despite ongoing research, there are still many questions about the diagnosis and treatment of Pernicious Anaemia that remain unanswered.
It is important for research funders to understand what is important to patients, carers and vascular health professionals so they can focus their research on areas that will make the biggest difference.

The Pernicious Anaemia James Lind Alliance Priority Setting Partnership (PSP) will also help to increase awareness of why research into Pernicious Anaemia is necessary and important.

The project is being independently overseen by The James Lind Alliance. The James Lind Alliance is a charity set up by the National Institute for Health Research in 2004. Its purpose is to bring together patients and patient groups, clinicians and other health related researchers to identify ‘uncertainties’ relating to the diagnosis and treatment of diseases. The JLA was established because it was thought that too many research programmes, funded by the National Institute for Health Research, were for the benefit of clinicians and other scientists and there was little or no opportunity for patients to have an input into the process that identifies ‘uncertainties’ that need researching. The JLA allows patients and clinicians the opportunity to agree on research topics that deserve to be researched.

The James Lind Alliance (JLA) facilitates the formation of a Priority Setting Partnership (PSP) that is composed of patients, clinicians and health related researchers. The PSP is the body that brings together patients and researchers to agree on topics that need to be researched. The PSP considers the results of a survey of patients who were asked to identify twenty uncertainties relating to the diagnosis and treatment of Pernicious Anaemia. Eventually, after much discussion and after various stages have been completed, the twenty uncertainties are whittled down to the ten most important questions that patients would like answered.

The Pernicious Anaemia JLA Priority Setting Partnership protocol

The project process

1. Create a steering group

A Steering Group, made up of around 10-12 patients, clinicians and researchers, meets around once a month. This group agrees the plan of action, scope and takes responsibility for the PSP.

2. Launch the survey

A survey is created asking patients and their carers to respond by posing questions they have for research.

3. Summarising the responses

With oversight from the steering group, the JLA Information Specialist will sort all the responses and creates summary questions. This becomes a long list of summary questions.

4. Evidence checking

The long list of summary questions is checked against existing research evidence to ensure they are true uncertainties. Any questions that have already been answered by research are removed.

5. Interim priority setting

Patients are asked to vote on the most important questions in an interim priority setting survey. This reduces the remaining long list of summary questions to a shorter list to be discussed at a workshop.

6. Workshop

The highest ranked questions from the interim priority setting survey are discussed in a number of workshops of patients, carers and clinicians who together agree the ‘Top 10’ list of priorities across a range of vascular disease areas. The workshops will be facilitated by an adviser from the James Lind Alliance.

7. Publish and promote Top 10 research priorities

The ‘Top 10’ is announced and published on the Pernicious Anaemia Society website and the James Lind Alliance website and promoted to researchers and funders. The PSP works with researchers and funders to further develop the priorities into specific research questions.

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