About the PSP

What is a Priority Setting Partnership?

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 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 (JLA) 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 facilitates the formation of a Priority Setting Partnership (PSP) that is composed of patients and health care professionals. 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.

Why are we doing this project?

The Pernicious Anaemia PSP has been established to identify gaps in research, and ‘unanswered questions’ on Pernicious Anaemia, as identified by patients, families and professionals.

What does the project involve?

There are several stages to the JLA process, each of which involves patients, carers and professionals working together.

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Documentation

Terms of Reference

PSP Protocol

1. Setting up the steering group

A Steering Group, made up of patients, clinicians and researchers, coordinates the PSP and organise its activities. This group agrees the plan of action, scope and takes responsibility for the PSP. The Steering Group is Chaired by an adviser from the JLA. Members of the Steering Group include professionals, parents and patient representatives.

2. Identifying potential ‘Partners’

Potential partner organisations are identified and approached to be involved in the PSP. They help to publicise the PSP and work with their members and networks to identify important topics or areas of concern that research should address; to find out what those ‘unanswered questions’ might be.

3. Gathering 'unanswered questions'

Questions are gathered from patients and professionals via a survey focussing on what they think are important areas for research that has not yet been carried out.

4. Summarising the responses

The PSP sorts all the responses and creates summary questions. This becomes a long list of summary questions.

5. 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.

6. 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 shortlist.

7. Workshop

The highest ranked questions from the interim priority setting survey are discussed in a number of workshops of patients and clinicians who together agree the ‘Top 10’ list of priorities. The workshops will be facilitated by an adviser from the James Lind Alliance to ensure this process is carried out fairly.

8. Publish and promote the Top 10 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.

More information, including a short video explaining the process, is available on the James Lind Alliance website.