What is a Priority Setting Partnership (PSP)?
People are now living longer after a cancer diagnosis; more people in the UK are living with or beyond cancer. But many people, including carers, are not living well. More and more people are living with impacts of cancer and its treatment – what we have termed Living With and Beyond Cancer.
A lot of research is looking for new cancer treatments, but there’s not enough research relevant to living with and beyond cancer. Research is only effective when we know what questions we want answered. There are so many possible avenues of research that we need a way to decide which is the most important.
NCRI is bringing researchers together to collaborate and find ways to answer research questions that should help people live better with, and beyond, cancer.
The first stage of this project is a Priority Setting Partnership. A Priority Setting Partnership brings together patients, carers, and health and social care professionals to work out what are the most important questions for researchers to answer.
A James Lind Alliance Priority Setting Partnership (PSP) enables patients, carers and health and social care professionals to come together on an equal footing to identify research questions in specific conditions or areas of healthcare for research, and then to prioritise these questions.
Each PSP consists of patients and carers, health and social care professionals and members of groups that represent all their interests. PSPs are led by a Steering Group with an independent Chair from the James Lind Alliance. Collaboration of this sort, where patients, carers and clinicians work together to set the research agenda, is rare, but vital.
PSPs have several stages and usually begin with a nationwide survey to gather questions about uncertainties in a particular healthcare area, for example living with and beyond cancer. Once the results have been analysed, an interim exercise takes place to further prioritise the uncertainties. The last stage is a final workshop where partners debate and finally arrive at a top 10 list of shared uncertainties. This page explains the Living With and Beyond Cancer PSP process in more detail.
The aim is to ‘translate’ the identified uncertainties into research questions in order to set the national research agenda, and provide researchers and research funders with the research questions that most pressingly need to be addressed.
What do uncertainties mean? The James Lind Alliance definition of an uncertainty is that:
- No up-to-date, reliable systematic reviews exist of research evidence addressing the uncertainty
- Up-to-date systematic reviews of research evidence show that uncertainty exists
Uncertainties can include other health care interventions, including prevention, testing and rehabilitation.
The UK has a growing population of people affected by cancer, yet the level of research relevant to people living with and beyond cancer is low in the UK. It is therefore important to carry out research to improve the quality of life of those affected by cancer. We have set up an initiative to help increase the level of research in this area.
We have identified that undefined research priorities has been a barrier to research in this area. The 2015 NHS Independent Cancer Taskforce report also recommends defining research priorities on long-term patient needs and survivorship issues and to identify mechanisms that enable this research to happen. To address this research barrier the NCRI is starting a James Lind Alliance Priority Setting Partnership exercise to identify research priorities that matter most to people affected by cancer and health and social care professionals.