Simon is a fierce advocate for patient involvement in health care in the United Kingdom through his roles at the National Institute for Health Research and INVOLVE.
What got you into patient and public involvement in research?
“Between ’92 and ’97 I worked at the Alzheimer’s Disease Society in England, and the chief exec decided he was going to change the way they funded research. How the money was dished out had been completely decided by a panel of scientists, and he decided that wasn’t right. Donors were giving us money, and people with dementia and carers were not consulted about what kind of research was done! So he established a network of people with dementia and carers, who decided, with the scientists, what research to fund.”
“This hit a chord with me for many reasons related to social justice, democracy and civic duty. Then, in 2006, I became chief executive of the Association of Medical Research Charities and it occurred to me that all of these charities were spending a hell a lot of money without actually asking the people that they were supposed to be helping what was important to them. This just seemed unjust and wrong.”
I will go so far as to say that it seems unethical to take people’s money and then not involve them in how you spend it.
What are your views about patient involvement in basic science research?
“I think you can do public involvement in all forms of science, but that’s different from saying it must always be done. I have seen some very good examples of public involvement in basic science. Like everything, it’s finding the right connection point that’s going to have value to patients and to scientists. Some of the best I have seen are schemes where you have one or two public contributors buddy with the research team in the lab.”
They visit them every six months and learn about how the science is going, and tell the scientists what their life has been like with the condition since they last met.
“The public contributors become part of the team and eventually become incredible ambassadors for the research. Mutually respectful relationships develop, which can maximize the impact of the work in a public arena.”
“Recently I had the opportunity to observe a grant review panel of one of our charities. They used to have patient and science panels look at the same applications separately. They decided to change their approach and brought patients and scientists together on one panel. They had two co-chairs, and on every application the patient led off with their view of it. It felt very equitable – that the patients’ views were being respected.”
“It was quite funny, actually – one application proposed an app as part of the project, which the science members of the panel were very excited about. It was digital, and there’s so much buzz about digital!”
Then one of the public contributors said, ‘Well, I can understand why you are really excited about this. But, you do know that with my condition I can’t actually use it?’ It was very powerful. The patient insight very convincingly said, ‘This sounds good, but in practice it just won’t work.’
“One of our key priorities around patient involvement is to increase diversity and inclusion. The population that is engaged with us is generally white and middle class. They tend to be ladies of a certain generation. And that’s not helping us do work that’s reflective of the whole population.”
“We are going to tackle this in a few ways. Involve, as the national lead for patient involvement in research, is going to be measured on how successful we are with diversity moving forward. We now have a champion for diversity issues, which is important. We are developing regional forums around the country and will be asking them to focus on diversity and inclusion.”
I have seen some really good work in diversity in some communities and clinical trials, but they just don’t seem to travel across the country.
“If I’m honest, there is also a funding issue. I have come across great pieces of work with the Asian community, for example, and the researchers would now like to do something similar with Eastern Europeans who have moved into the community, but they just don’t have the funding. Sustainability and continuity is going to be one of our biggest challenges going forward.”
Have you had to be a bit of a shit disturber to get researchers to take patient involvement seriously?
“Maybe. The senior civil servant who asked me to do my current role said to me, ‘I want you to disturb things. I want people to be ringing me up complaining about you.’ I also got some really good advice about the need to be visible, especially in the early days, because I don’t actually have my hands on a lot of resources. I was told, ‘You have to keep doing things until someone says no. And then just keep on doing them.’ I have taken that to heart.”
“You have to be persistent, patient and positive as well. I do hit people over the head, but I always try to have a solution in the other hand.”
What I tell our movement is that it’s no good whinging all the time about how poorly public involvement is done. Quite often it’s because people don’t have the tools or the experience. So, we have to go to them with solutions.
“My blog is an important outlet for me. People often ask me whether the Department of Health phones me up and tells me to take stuff down. I have never, ever had that. They have always recognized, I think, the value of someone who is doing my role to be authentic. The biggest problem is that I have done 822 blogs on public involvement! My wife and I have a fun little exchange sometimes. I leave for work and she says, ‘What are you going to do today?’ I say that I am going to talk at a meeting, and she says, ‘Well, what are you going to talk about?’ ‘Public involvement!’ ‘Haven’t you said enough about that already???’ ‘No, there’s plenty more!!!!’
“I get frustrated that in the health world we often communicate very poorly.”
Can you give an example?
“Care.data. This is a program in which the UK government was going to link primary and secondary data for clinical care needs, but also for research purposes. It is really, really important, and in the public interest.”
“However, information about Care.data literally landed on people’s doorsteps as a very poorly done leaflet. It caused a massive controversy and put a real spanner in the works. And they simply hadn’t done any of the basic things like talk to people. ‘How would you like to be talked to about this? What would worry you? What would reassure you? How would you like it delivered to you?’ None of that ground work was done. People literally just got a leaflet on their doorsteps saying, ‘We’re going to do this.’ It was staggeringly bad. It was a bit like that classic adage – reputations are built in decades but smashed in seconds.”
“The aims of care.data will be achieved in the end. They must be. We have just made it a lot harder on ourselves. That’s a real shame because it’s essentially about improving health and wellbeing. I am a strong advocate on sharing data. I think it’s necessary and important. I understand people’s concerns. I don’t share a lot of those concerns, but I understand them. The leaflet didn’t address the concerns, and a massive opt out campaign was sparked as a result.”
To be fair to communicators who work in our systems, they are often surrounded by people who are quite risk adverse, don’t understand how communications work, and don’t give them the right tools or the backing to communicate well. So, I have a lot of empathy with communicators who are in that really difficult position.
One of your interests is the public communication of science
“There’s some really brilliant and impactful public communication and engagement projects around science being done in universities. But on the national stage, when institutions and organizations come together to do public communication, they tend to think about it as trying to educate the ignorant masses. And I think that’s just the completely wrong approach.”
I don’t believe in the concept of science literacy. It’s just a ridiculous notion. Force-feeding people is not the way.
“You should do work that will resonate with the circumstances people find themselves in and that aims to engage them. Context is everything. Give people lots of access and opportunities to become interested but also respect the fact that people have the right to choose not to be interested.”
“I also think they should be using Citizen Science a lot more widely when engaging and communicating about science.”
“Institutions tend to be very media focused in their communications. It’s all about national newspaper headlines and doesn’t show enough agility and imagination for the world that we live in, and all of the different ways that people communicate.”