One problem with the oft-heard mantra of "putting patients at the centre of what we do" is that every patient is different. We have dustmen and professors, housewives and high-flyers, we have rare cancers and common ones, we have the cured and the dying. So how do you get patients involved in research?
There seems to be a wish for a magic wand which anyone could wave. One important fact we have learned from experience of patient involvement in cancer in the NHS is that everyone's ideas of what they need are different and any idea that there might be a magic formula is far removed from reality.
Lets start with some fairly obvious questions. What do you want patients to do? This is a quite reasonable first question and like all first questions it opens up a range of follow-ups. Would patients want to help you with that? Would they need training? How can you ensure that patients have the necessary skills and knowledge to give you added value? Where will you find suitable patients? What methods can you use to engage them so that you get maximum value? I could continue but this provides you with enough to get your teeth around.
Organisations with expertise in providing help to meet this challenge, whether to academic research, governmental institutions or to industry, are virtually non-existent. There are many published case studies and the new journal Research Involvement and Engagement is becoming a helpful source. There is a body of advice from INVOLVE (although it is NHS focussed). The INVOLVE material breaks down the research process into nine steps and this alone can be a useful aide. Several disease specific charities use patients to advise their own research activity but may be reluctant to provide help to industry though most would advise.
Does this mean that constant reinvention is inevitable? This is what is happening at the moment as the patient-centric mantra takes hold.
It took academic cancer research seven years from the Calman Hine Report in 1995 to develop a collaborative initiative to solve the problem for charitable and publicly funded cancer studies. Today the NCRI Consumer Forum has 82 members, patients and carers, crossing the whole spectrum of cancer. In its early days the focus was on Phase 3 RCTs of treatment. Today the focus is much wider covering pathology, surgery, radiotherapy, translational studies, primary care and increasingly, quality-of-life on the patient journey.
I would suggest that industry needs to do something similar if the patient-centric mantra is ever to be believable. Each company can act alone of course but working together might actually prove easier. However could something like this be blocked by legalistic ideas of commercial sensitivity? I cannot answer that question, only you can.
Roger Wilson has been an active patient representative and advocate in cancer research for 14 years. He chaired the NCRI patient group in its early days and is still a member. He has worked with a number of pharma companies helping to develop patient engagement.