About the Priority Setting Partnership
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 unanswered questions 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 unanswered questions. The last stage is a final workshop where partners debate and finally arrive at a top 10 list of shared unanswered questions.
What do unanswered questions 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
Unanswered questions 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 living better 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 the NCRI living with and beyond cancer research 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 has completed 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 in 2018.
1Macmillan Cancer Support http://www.macmillan.org.uk/about-us/what-we-do/evidence/cancer-statistics.html
The steps involved in setting the Top 10 research priorities in living with and beyond cancer are:
- Initial scoping meeting
We held an initial scoping meeting on 7 Feb 2017 to outline what will be involved in the process and also to identify the scope of this Priority Setting Partnership (PSP), who we should involve in the Steering Group and engage as wider Partners. We held our first Steering Group meeting on the 24th April 2017.
The PSP scope encompasses all aspects of the living with and beyond cancer experience including physical, psychological, social, economic and spiritual aspects. The PSP looked at interventions, care and support across all cancers (including supportive and palliative care). The scope of the PSP is limited to any adult first diagnosed with cancer over the age of 16, carers and health and social care professionals who care for them. The scope excludes questions on new cancer treatment solely aimed at extending life and /or only relevant to end of life care.
- Identifying unanswered questions
This can be collected via survey and possibly also harvested from literature. The Steering Group constructed a survey for patients, carers, relevant health and social care professionals and other interested individuals to submit questions. Our UK-wide survey to gather questions was open from 4th September to 15th November 2017. Thank you for those who took part and help us set the research priority.
1492 respondents proposed 3500 unanswered questions for research. The respondents consisted of 55% patients, 20% carers and 25% professionals, including patients across all ages (16+), pathways and cancer types, 4 nations and a broad range of medical, nursing, allied health and social care professionals.
- Refining questions
The questions submitted were checked against systematic reviews and guidelines. Around 2000 questions were then compiled to form 54 research questions.
Unanswered questions were then be prioritised through a second vote by patients, carers, relevant health and social care professionals. The second UK-wide survey was open from 27th February to 25th April 2018. 1918 patients, carers and professionals ranked the 54 questions. The Steering Group then analysed the interim results and create a shortlist of 26 unanswered questions.
- Narrowing down to a Top 10
In the final PSP workshop on 11th June 2018, 32 cancer patients, carers, health and social care professionals ranked the 26 shortlisted unanswered questions to agree on the Top 10. The workshop was facilitated by the James Lind Alliance to ensure fairness.
- Dissemination and next steps
The Top research priorities will be publicised widely to ensure that researchers and those who fund research really understand what matters to people affected by cancer. This project is being facilitated by the James Lind Alliance, which is part of the National Institute of Health Research. The top research priorities will be directly reported to the NIHR Evaluation, Trials and Studies Coordinating Centre, which provides evaluation and funding of research for the NIHR. They will be promoted to many other research organizations and relevant funders in the UK. We anticipate they will directly influence future research funding calls.
We will develop the priorities into more specific research questions and develop strategies around each of the priorities which will form the basis of planning around any future work in living with and beyond cancer research.
For a full list of steering group members, please click here.