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 an initiative 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 clinicians to agree on topics that need to be researched. The PSP considers the results of a survey of patients and healthcare professionals who are asked to identify uncertainties relating to the diagnosis and treatment of Pernicious Anaemia. The survey will provide us with a long list of questions and then a workshop will he held to whittle these down to a ‘short-list’ which will then be ‘evidence-checked’. We will then come back to you with this list, so patients and healthcare professionals are able to vote on what they consider to be the most important questions.
The highest ranked questions from that interim priority setting survey are discussed in a number of workshops of patients and clinicians who together agree the ‘Top 10’ list of priorities. This ‘Top 10’ will be announced and published on the Pernicious Anaemia Society website and the James Lind Alliance website and promoted to researchers and funders.
Why are we doing this project?
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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1. Setting up the steering group
2. Identifying potential ‘Partners’
3. Gathering 'unanswered questions'
4. Summarising the responses
5. Evidence checking
6. Interim priority setting
8. Publish and promote the Top 10 priorities
More information, including a short video explaining the process, is available on the James Lind Alliance website.