Monthly Archives: July 2015

Stand up doctors: you are patients too

Simon Crompton

Simon Crompton

I count myself very lucky that, as a Cancer World journalist, I get to meet some of the top names in cancer treatment and research across Europe. There have been some fascinating recurring themes from my interviewees over the years: a seven-day-a-week commitment to work; the lasting influence of fellowships to the United States early in their careers; their faith in the younger generation of doctors and their ability to inspire their elders.

But there is one thing that none of these inspiring people ever say, and it has always puzzled me. While most will talk about the doctor-patient relationship and the fundamental importance of patient-centred care, none talk about themselves as patients.

Yes, it’s true that when I ask doctors or nurses about their own experience of cancer they will often tell me about personal or family episodes of illness. But for all our plentiful discussions about the importance of empathy and the intensity of the illness experience, health professionals still talk about “patients” as if they were a different category of person from a doctor or a nurse.

An ingrained them-and-us attitude

When entering into a conversation about, say, patient-driven research, I keep on half-expecting an interviewee to voluntarily say “Well, of course, I’m a patient too” and to talk about how their own experience has helped inform their approach. But they never do: even though 99% of those researching or treating cancer will themselves have consulted a doctor about some ailment at some stage of their lives.

Long-established patterns of working, traditional hierarchies, medical training and a perceived need for cool detachment seem to have ingrained the them-and-us attitude into health and professional systems. It almost seems as if many health professionals don’t dare associate themselves with those on the receiving end of things: they see it as necessary to be aloof, separate from the experience of illness.

Detachment clearly has its place. But it does seem odd that even enlightened health professionals seem to fear there is something unprofessional about openly consulting with feelings about what it’s actually like to be ill, worried and confused.

An odd Spartacus fantasy

Perhaps I’m wrong. It’s certainly true that some doctors have spoken very eloquently about how illness has made them reconsider their work. Oncologist Fazlur Rahman wrote brilliantly in The Oncologist (reprinted in Cancer World in March) about his experiences after a traumatic ankle injury, and how unfeeling doctors transformed his attitude to empathy in medicine. And before his death at the age of 37 in March, neurosurgeon Paul Kalanithi blogged wonderfully about how he handled waiting to die following a diagnosis of metastatic lung cancer.

But it seems odd to me that associating with the patient side often comes as a revelation. I suppose what I’ve been expecting all these years is a more everyday acknowledgement that, actually, the dividing line between health professionals and patients is an artificial one. I have an odd fantasy of a plenary session at an ECCO conference where, one after another, doctors stand up in the auditorium and declare, Spartacus-like, “I am a patient”.

It’s official: Top 10 research priorities revealed for brain & spinal cord tumours

stu farrimond portrait cropped

Guest blogger – Stuart Farrimond, editor of gurumagazine.org, blogs at realdoctorstu.com

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.

 

We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – chall@eso.net You can find our guidelines here – How to write a blog