What research should be funded and who should get the money? It’s a fifteen billion euro question – and the answer you get depends on who you ask.
When I practiced as a doctor I believed that medical research should always focus on extending life and finding new treatments. After all, saving lives was why I entered the profession. Emotional, psychological and lifestyle factors are of trifling significance by comparison… or so I thought.
Eight years ago my perspective underwent a seismic shift after I was diagnosed with a glioma – a malignant brain tumour. Only then did I start to realise that well-intentioned research efforts can often miss the point. Treating the tumour alone may extend life, but as a cancer patient I know that life is more than added years. All too often, researchers can set their priorities based on what they consider important, what tickles their fancy, or simply based on with what they have experience in.
Two years ago, Dr Robin Grant, Consultant Neurologist, at the Edinburgh Centre for Neuro-Oncology, set out to find a broader answer to the question of what brain and spinal tumour research should be prioritised.
He gathered key leaders in primary central nervous system tumours, each with a wide network of influence in their speciality, to establish a James Lind Alliance ‘Priority Setting Partnership’. Over the next eighteen months, a collaboration formed between representatives of all those affected by brain and spinal cord tumours: patients, carers, major brain and spinal cord tumour charities and multidisciplinary professional organisations.
The ‘Top 10’ list of UK clinical research uncertainties in brain and spinal cord tumours was developed by the partnership, drawing on the expertise and experiences of all those directly affected by the conditions. Last week, the list was officially launched at the British Neuro-Oncological Society annual meeting, with a call for the assembled researchers and clinicians, and crucially research funders, to use it to inform and guide their own actions.
Here it is:
Top 10 priority research questions in brain and spinal cord tumours
1. Do lifestyle factors (e.g. sleep, stress, diet) influence tumour growth in people with a brain or spinal cord tumour?
2. What is the effect on prognosis of interval scanning to detect tumour recurrence, compared with scanning on symptomatic recurrence, in people with a brain tumour?
3. Does earlier diagnosis improve outcomes, compared to standard diagnosis times, in people with a brain or spinal cord tumour?
4. In second recurrence glioblastoma, what is the effect of further treatment on survival and quality of life, compared with best supportive care?
5. Does earlier referral to specialist palliative care services at diagnosis improve quality of life and survival in people with a brain or spinal cord tumours?
6. Do molecular subtyping techniques improve treatment selection, prediction and prognostication in people with a brain or spinal cord tumour?
7. What are the long-term physical and cognitive effects of surgery and/or radiotherapy when treating people with a brain or spinal cord tumour?
8. What is the effect of interventions to help carers cope with changes that occur in people with a brain or spinal cord tumour, compared with standard care?
9. What is the effect of additional strategies for managing fatigue, compared with standard care, in people with a brain or spinal cord tumour?
10. What is the effect of extent of resection on survival in people with a suspected glioma of the brain or spinal cord?
The lengths that the James Lind Alliance Priority Setting Partnership process goes to in defining ‘Top 10’ lists is staggering. In March 2014, around 200 people (patients, carers and health professionals) submitted more than 600 research questions on the treatment and care of brain and spinal cord tumours they felt needed urgent answers. These were refined, formatted and consolidated, weeding out questions that previous research has already answered. The resulting 44 questions were then put to another sample of over 200 people to rank in order of priority.
Last November, 29 ‘stakeholders’ used these results to hone in on the ‘Top 10’.This is the point at which I became involved. As both doctor and patient, my priorities were conflicted: the “patient” in me wanted research that could help me deal with symptoms; my “doctor head” however told me that physicians desperately need better treatment data.
These tensions were borne out through the diverse mix of professional and lay representatives. The experienced James Lind Alliance facilitators have the diplomacy skills that could broker peace in any conflict situation and, after six hours of carefully organised voting, ranking and discussions, we finally selected our top 10. Looking back now, it is difficult to imagine a fairer, more representative way to set cancer research priorities.
Thanks to Dr Grant and other volunteers and workers involved in the process, these priorities can now help ensure that future research efforts will improve the lives of cancer patients. After all, improving lives is why we enter our profession.
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