The research carried out here is at the junction where lab-based science meets patients. Working with patients to integrate their views and wishes seems obvious, but there’s no pretending it always sits easily with researchers. Some embrace it, while others feel that training and expertise give them an unassailable place in what should remain their professional domain.
That said, we’re getting better at chipping away at their reserve, in part through gathering clearer evidence for the impact of patient involvement (PI). There’s nothing like showing a traditionalist that working with patients makes their work more fundable or more likely to recruit patient participants for convincing them of the merits of such partnership.
One area where PI is often challenged is in relation to lab science, the argument often going along the lines that we’d not have penicillin or statins if scientists hadn’t been free to tinker, undistracted by patients who don’t understand the technicalities.
Such views can still persuade me that, just as I go to the garage when my car breaks down and I don’t then give the mechanic my opinion about how to fix it, so we need to defer to scientific skills and judgment. But then again, back to the car analogy, I’m only in the garage because I want to be back on the road. So do we need to ensure that patients stand at the shoulders of the folk in lab coats to remind them which road they’re on?
Indeed, a growing number of models use PI even at the earliest stages. The Alzheimer’s Society Research Network involves 250 people with dementia and carers in deciding where to spend its £5.3M research budget. They make no investments unless patients and carers deem them a good use of the charity’s money; basic scientists should be reassured by the plethora of test-tubes on their website and reports.
Further afield, a Swedish venture, Combine covers all the country’s medical universities and encourages cooperation between patients, professionals and industry working on inflammatory problems such as rheumatism. As Staffan Lindblad, a researcher and rheumatologist says “”Patients learn about scientific research, research ethics and what is expected of them as research partners…Patient involvement should be part of all the projects covered by Combine, from basic research to how new knowledge is translated into care.”
Once you start looking, PI in basic research is everywhere. Independent Cancer Patients’ Voice (ICPV) runs a study week to help patient advocates move “from bedside to bench” through understanding basic cancer biology and much more besides. http://www.independentcancerpatientsvoice.org.uk/voice-science-for-patient-advocates/. And there’s a great quote from a senior investigator in a recent publication from INVOLVE (the national organisation that supports PI (LINK: http://www.invo.org.uk/wp-content/uploads/2014/07/NIHRSeniorInvestigatorsINVOLVE2014.pdf): “You might think that because you’re studying a molecular signalling pathway, PPI is not important, but it is still about patients. PPI is essential for genomic research, to ensure all of the concerns are fully understood and ethical issues are properly addressed.”
As with all PI, we need better evidence that such activity leads to better research for patient benefit, but meanwhile we must make the case for doing it. Simon Denegri, chair of INVOLVE, was at the Alzheimer’s Society when it was planning the Research Network, and wrote on his own blog “When it comes to public involvement in research you must be willing to put everything ‘above the line’ and up for discussion by patients and carers. It may be that you agree to put some bits off until later. But, at the beginning, you must show as an organisation that you are brave enough to listen to what people have to say – however hard – and turn this into an agenda for improving the quality of what you do.”
We’re not quite at the beginning in Oxford, and we certainly find some bits very hard, but we’re also definitely up for putting everything above the line.
Stop press: One of our patient partners and I will be doing a live interview about PI on BBC Radio Oxford on 4th Nov at 9am – listen live here: http://www.bbc.co.uk/radiooxford