“Historically, decision-making in cancer research – how the resources are allocated, and what questions are answered – has been driven by the opinions of researchers and clinical experts.
But can we assume that the priorities of researchers are necessarily the same as those of patients? And should research funders do more to ensure that patients’ needs are taken into consideration?
In fact, there is plenty of evidence to suggest that patients’ priorities are often quite different to those of researchers.
There are multiple reasons why this is not an ideal situation – practical, political and ethical:
- Research questions that might be crucial to patient decision-making, or that might make it easier to live well with cancer, can be overlooked;
- Public funds are not spent addressing the issues that matter most to the people for whom research is intended;
- Engagement in research is threatened if patients don’t recognise the importance of the research question.
Researchers are now encouraged to seek the input of patients at all stages of the research cycle, including setting priorities for research.
The best-known and longest-established approach to involving patients in setting priorities is that of the James Lind Alliance (JLA), which uses a rigorous methodology to bring together multiple stakeholders to prioritise unanswered questions for research. Other methodologies are in use that resemble the JLA approach, or that involve patients agreeing research outcomes. There are already several JLA ‘top 10s’ for a range of malignant conditions and associated challenges.
At Oxford Cancer, we have worked with patient groups in workshops to talk about what matters most to - for example -people with myeloma, myelodysplastic syndromes and myeloproliferative neoplasms. Further work is planned for people with colorectal cancer, and we await the imminent publication of a ‘top ten’ for oesophageal cancer, which we will share locally in partnership with OOSO, the local patient group.
The benefits of listening to patients in this way are multiple:
- We foster relationships that will inform, strengthen and promote our research;
- We demonstrate our commitment to valuing what patients can teach us;
- We find out what patients understand about what is already happening, creating opportunities for better communications about research and research participation;
- We give people affected by cancer the chance to shape how things might be for people like them in the future; it is an activity that is practical, ethical and hopeful.
All of this will deliver on Oxford Cancer’s commitment to ensuring that the research we support is guided by the experiences and priorities of people affected by cancer.”