A revolution is brewing among researchers, with the rise of citizen science and greater involvement of the public – but some aren’t so convinced.
The ability to put a white coat on a person and suddenly make their opinions seem much more credible than they actually are is well documented but, in some cases, it can even make patients experience severe ‘white coat hypertension’.
However, science can no longer rest on its laurels and stick with what has gone before – one only has to look at the long track record of poor representation of people from diverse backgrounds, dating back hundreds of years.
Now though, a revolution is bubbling beneath the surface in the Irish research community, whereby a number of different groups are calling for greater participation of both the public and patients.
This means not only giving greater feedback on the research they are a part of, but also actively encouraging choices in the planning of future research.
Last May, the first of potentially many future public and patient involvement (PPI) programmes was revealed, called PPI Ignite, with a total of €1.75m to be distributed to five different universities to get the ball rolling.
The first of its kind in Ireland, the programme’s funders over at the Health Research Board (HRB) have pointed out that the current model of researching funding decisions – made by international peer review groups – only awards funding, at most, 25pc of the time.
But does this take into account the needs of the patient or the general public who are actually using it? The answer appears to be no, according to Sean Dinneen, who will be leading the PPI Ignite programme at NUI Galway (NUIG).
Looking to Obamacare
“If we were to turn the clock back 15 or 20 years, you and I could be doing this interview around research ethics asking, ‘Is it necessary?’ or ‘What’s the value of it?’” he said candidly in conversation with Siliconrepublic.com.
“It’s a given now that research ethics is accepted; you cannot apply and you cannot undertake research without being reviewed by an ethics committee – but that wasn’t always the case.”
Internationally, Ireland is lagging behind some of the countries it is trying to emulate, such as the US, where former president Barack Obama established the Patient-Centered Outcomes Research Institute (PCORI) under the Affordable Care Act, otherwise known as Obamacare.
In America, Dinneen believes that PCORI was established as a “kickback” against a research sector heavily involved with corporate interests, particularly the pharma sector, whose own goals may not suit the actual patients themselves.
“It’s all about getting the drug approved and getting it to market and through the FDA,” he said. “PCORI looks at … where there are no drugs or devices, such as those who live with incontinence.”
As a professor of diabetic medicine at NUIG, Dinneen is very familiar with the biomedical sector, and strongly believes that PPI will create a more focused era of research in Ireland.
“A lot of biomedical research is driven not by the needs of the patient, but by the needs of the company that has developed a new drug or technology,” he said.
“What PPI has the potential to do is to leverage the voice of the patient to say: ‘You can hang on to those drugs and devices’. What we would really like is to understand how we get people who are not on board with self-care more on board.”
So, in effect, it would appear PPI may have more of a rebellious streak, in terms of socialising the needs of patients over greater corporate interests.
“I think of PPI in the Irish context of allowing us to stand back, and finding what are the important questions and priorities [in research].
“We’re spending a lot of taxpayers’ money on these studies, so why don’t we do the stuff that’s really important for those on the ground?” he suggested.
Challenges of PPI
Not everyone is so convinced, however, even among Dinneen’s own writing group, with some believing that public and patient involvement does not necessarily equate to better results.
Last year, a paper published in BioMed Central by researchers in the UK asked how much power PPI had shifted from researchers to the public and how much influence does it hold?
While it argued that the public definitely now have a voice within British science initiatives, there was evidence that their influence was exaggerated.
“The public involved in research are not always equal partners,” it said. “The scientific research community still has the loudest voice, and patients and the public do not always feel sufficiently empowered to challenge it.”
Making the effort to educate
It does require a lot of work, Dinneen admitted, with PPI needing participants to undertake significant amounts of training to be brought in to a research panel.
“Our PPI work within our young adult programme takes an enormous amount of time to do it well,” he said.
“You can’t just say you trained a group of PPI candidates by sitting them down and giving them a leaflet, that’s not what it’s about.”
It is potentially harmful, he added, to bring in potential public or patient contributors and have them influence potentially life-changing research endeavours with no training.
However, there are attempts being made to bring patients and the public up to scratch, including the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) group that has an umbrella organisation at EU level to get patients up to speed with research methodology within clinical trials.
In the long run, the hope among those putting time and effort into developing the PPI method is that it will become a mainstay of Irish health research and integral as much as, say, research ethics previously alluded to.
“If you believe PPI has something to offer – and I think it does – then, if we are chatting in another 10 or 15 years’ time, we as an Irish research health community can say we pulled that one off,” Dinneen concluded.