Priority Setting Partnerships

What is a Priority Setting Partnership (PSP)?

Priority Setting Partnerships focus on a particular condition or healthcare issue. They are made up of organizations and people living with the condition, their carers and the healthcare professionals who treat them.

What does a PSP do?

PSPs work to find and prioritise questions that can be answered through research, decided by people living with a condition and healthcare professionals. The PSP will first ask people to complete a survey, highlighting the questions they most want to see answered through research.

Those questions are then prioritised into a final list of Top 10 priorities, which will be available to researchers and research funders. The process is overseen by an organisation called the James Lind Alliance.

What is the James Lind Alliance?

The James Lind Alliance (JLA) is a non-profit-making organization that was set up in 2004. It brings patients, carers and healthcare professionals together to find and prioritize the unanswered questions about different health conditions. The National Institute for Health Research (NIHR) funds the infrastructure of the JLA, to oversee the processes for PSPs.

Who is involved in the Liver GSD PSP?

The Priority Setting Partnership will be overseen by a steering group. The steering group includes physicians, nurses, researchers and dieticians working with patients with Liver GSD, carers of patients with Liver GSDs and patients with Liver GSD. Furthermore, the wider partners include (carers of) patients, healthcare professionals, patient organizations, and broader organizations for metabolic diseases in general.

Why are PSPs important and why is Liver GSD in one?

As Liver GSD is a rare disease, an international collaboration on finding unanswered questions that are important to both patients and healthcare professionals is essential. To work together internationally, is also important to raise funding to answer these questions.


The survey

How can I complete the form?

The survey is now in a pilot stage. As soon as the final version is online, you can fill it out on the website. If you want more information, or if you want the survey sent to you directly, go to the contact page and fill out our form.

How does the survey work?

The survey is composed out of a page with three spaces to put unanswered questions that you have about management or care of a patient with Liver GSD. Afterwards, you are asked to leave your contact details to keep you updated on the progress of the PSP.

I have difficulty reading. How can I take part?

If you have difficulty reading, you can ask the organization (IGSD PSP) to search for possibilities to participate. You can contact them via the form on the contact page

How will IGSD PSP store and use the information that I give them?

We will keep the information you supply secure. We will only gather contact information to send the second prioritization questionnaire.


After the survey

What will happen to the questions I formulate?

After gathering your questions about management or care of patients with Liver GSD, we will sort the uncertainties into categories. These categories will be sent back to the participants in order to determine the Top 10 priorities. These Top 10 priorities could determine which research questions are most important to answer for patients, carers, physicians, nurses and dieticians.


The results and their impact

What will happen to the final Top 10 research priorities?

IGSD PSP will publicize the final Top 10 research priorities in an international journal. Furthermore, we will involve researchers and funders to have these questions answered.

What happens to the questions that are not prioritized or put in the final Top 10?

These questions are not lost. They will be published on the James Lind Alliance website and can still be looked at by the participants, researchers and other organizations that fund research.