We bring patients, carers and clinicians together to prioritise research questions for the benefit of health research funders.
- About the JLA
We believe that patients, carers and clinicians should work together to agree which treatment uncertainties deserve attention and funding.
- About PSPs
“This PSP has been a truly collaborative effort and ...
- How do I set up a PSP?
- When setting up your own Priority Setting Partnership (PSP), it is important that you read through the JLA Guidebook to understand the steps involved.
- Templates and useful documents
A list of documents and templates useful when creating a PSP.
- Using the JLA logo
- Instructions for using the JLA logo on documents.
- JLA Advisers
- James Lind Alliance (JLA) Advisers are independent consultants who ...
- The James Lind Alliance (JLA) was established in 2004 ...
- Health with Multiple Conditions in Old Age
- Top 10s
- The Top 10 priorities for future research identified by each PSP, a collaboration between clinicians and patients to identify research priorities.
- JLA Guidebook
The JLA Guidebook will help you through the priority setting process. Containing everything you need to understand a PSP, or run your own.
- 1. Introduction
The JLA Guidebook is aimed at people that are interested in the JLA’s priority setting process: namely, patients and their carers, clinicians
- Why the JLA method?
- Learn more about the principles of the JLA.
- The James Lind Alliance
- The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the unanswered questions about the effects of treatments that they agree are most important.
- Acknowledgements of individuals involved in the writing of the JLA Guidebook.
- 2. Treatment Uncertainties
- Includes the JLA's definition of treatment uncertainty and links to articles about treatment uncertainty
- 3. Priority Setting Partnerships
Priority Setting Partnerships (PSPs) bring patients, carers and clinicians together to jointly identify priorities for research. Who should take part?
- Who's who in the Priority Setting Partnership
- The structure and role of people in a Priority Setting Partnership.
- The features of a JLA Priority Setting Partnership
- What are the underpinning principles of a JLA PSP? Who should not be involved?
- JLA Advisers
- What's the role of a JLA Adviser? They support and guide the PSP, neutrally, ensuring that the process is followed in a fair, transparent way
- 4. How to establish a PSP
How to make your initial enquiry.
- Roles & responsibilities
Being a PSP leader - what's involved?
- The PSP Steering Group
- What does a PSP Steering Group do? Includes a template Steering Group Terms of Reference document for PSPs to adapt
- The Information Specialist
- What does a PSP Information Specialist do? What skills does the Information Specialist need?
- The Project Coordinator
- What does a PSP Project Coordinator do? How much work is it?
- What are the costs involved in running a PSP?
- How much does it cost to run a PSP? What might you need to spend money on?
- How long does it take to run a PSP?
- Information on the time taken to run a PSP, with an example timetable
- 5. Setting up a PSP
How to start setting up a PSP Steering Group of key people who collectively can represent all or the majority of issues. Includes links to documents needed.
- Agreeing scope and protocol
- Ideas for when thinking about the scope of a PSP. Implications of decisions made. With links to examples of protocols from previous PSPs.
- Identifying and managing partners/stakeholders
- When setting up a PSP it is essential to identify partners and the patients, carers and clinicians affected by the health topic being considered.
- Initial awareness meeting
- It's optional, but some PSPs hold an initial awareness or launch meeting to raise the profile of the PSP among patient and clinician groups
- Managing the PSP
Things to agree on within the PSP, to help everyone to work in a consultative and inclusive way.
- Appreciating values and perspectives
- Encouraging equal valuation of views from all PSP participants
- Ideas for communications around PSPs, including using the JLA brand
- Working with patients and carers
- Tips for inclusive communication and involvement
- Working with clinicians
- Ideas for involving clinicians in the PSP
- 6. Gathering uncertainties
Where should PSPs gather their uncertainties from? How many should they aim for? Including examples of how this has been done
- Survey design
- Developing a PSP questionnaire, with examples
- Survey duration
- The duration of a PSP survey should allow enough time to generate enough responses to cover as many themes as possible.
- Consent and ethics
- Using personal data and information about ethics approval
- Searching existing literature
- Documented sources of information need to be searched for evidence of uncertainty during the prioritisation exercise.
- 7. Data processing & uncertainties
The detailed steps involved in the data management for a Priority Setting Partnership with examples of numbers of survey respondents
- Stage 1. Download the survey data
- Advice on organising PSP data, with a link to a template for this
- Stage 2. Remove out-of-scope submissions
- Advice on what to do with out-of-scope survey submissions
- Stage 3. Categorise eligible submissions
- Once out-of-scope submissions have been identified and removed, PSPs may allocate the remaining submissions into categories, also known as a taxonomy.
- Stage 4. Format the submissions
- Submissions for the PSP may need to be rewritten or rephrased to clarify the precise uncertainty and to make it easier to check against the evidence base.
- Stage 5. Verify the uncertainties
- Each uncertainty submitted, including indicative uncertainties of combined submissions as described above, needs to be verified as a true uncertainty.
- 8. Interim priority setting
Ideas about how to present an interim priority setting survey
- Interim priority setting approaches
The main three methods used by a PSP to ask for interim priorities
- Examples of interim priority setting
- The Mesothelioma PSP listed 52 questions in the interim survey ranking them i order of importance.
- Collating and scoring interim priorities
- Completed interim prioritisation results should be grouped into categories and separate scores kept to ensure a fair weighting of the constituent groups.
- 9. Final priority setting
What are the principles of final priority setting in a JLA PSP?
- Final priority setting approaches
- Why the JLA supports an adapted Nominal Group Technique for PSPs choosing their top 10 priorities.
- Preparing for the workshop
A summary of steps required in organising the meeting for the final workshop and the materials needed
- Who should take part?
- Those eligible to take part in a JLA priority setting workshop must have personal or professional experience of the condition in question.
- Workshop process on the day
What happens in a standard JLA final priority setting meeting?
- Example Top 10
- A link to where all of the Top 10s published by JLA PSPs so far can be found
- Workshop best practice
- The ground rules involved in a JLA PSP final workshop
- Evaluation of the final workshop
- Evaluating the workshop helps JLA PSPs understand how the process has worked for them and to address any individual concerns.
- 10. Dissemination and publishing of the Top 10 priorities
- It is important for PSPs to publicise and disseminate the results of their priority setting exercise to reach potential funders and researchers.
- 11. Taking priorities to research funders
How to disseminate priorities to researchers and research funders. What extra work is needed?
- Finding appropriate research funders
- Funders of research with the appropriate interests in addressing treatment uncertainties can be found in both the public and the charitable sector.
- Finding appropriate researchers
- Ideas for searching for researchers or their networks
- An example of working with the NIHR HTA Programme
- PSPs have benefitted from discussing potentially fundable research priorities with the NIHR’s Health Technology Assessment (HTA) Programme via the JLA.
- 12. Follow up
- After the final workshop, you can provide feedback to the JLA in a short survey. Your long term involvement in evaluating the impact of a PSP is important.
- 13. Toolbox of key PSP documents
- Link to documents which provide more useful information and examples of work done by previous PSPs.
- News and Publications
- The latest news from our PSPs, collaborations between patients, carers and clinicians to prioritise health research questions.
- Contact us
- Contact details for the James Lind Alliance.
- Information on the cookie policies of the James Lind Alliance.
- The structure of the James Lind Alliance website
- All materials written for this website by the JLA ...
- Making a difference
How JLA PSPs are making a difference to research
- Funded Research
- A summary of research that has been funded as a direct results of a James Lind Alliance Priority Setting Partnership
- Other outcomes from PSPs
- As well as getting more research funded in a health area, PSPs have other benefits
- Working with the priorities
- Many people do more work with PSP priorities to explore them even further
- Follow up activities
- What have JLA PSPs done to track the response to their research priorities?
- Have your say
- These are surveys currently available from James Lind Alliance Priority Setting Partnerships for patients, carers and health professionals to take part in