Dr Danielle Miles is the Programme Lead and Technology Innovation Manager for Grow MedTech based at the University of Leeds. In this article, she discusses the importance of directly involving patients in research, and how we made it a primary focus of our programme.
In my previous life as a scientist, I often carried out public engagement around my research. I found it really motivating: when you actually speak to people who are dealing with the problem you’re trying to solve, it makes it very real and it drives you to develop better technologies.
Most scientists will either interact with the public through engagement of this kind – which is essentially the dissemination of research to a lay audience – or with patients through clinical trials and studies, where the research is being done ‘to’ patients.
Patient and public involvement – or PPI – is something quite different altogether. PPI is when patients and the public are actually involved in the research directly, where the research is carried out with and by members of the public, rather than to, about, or for them.
At Grow MedTech, we’ve aimed to champion PPI right from the start, ensuring that patients play a central role in the programme and in each project we’ve supported. Our ambition is to develop medical technologies that are better aligned to patient needs and that means involving patients and people with long term conditions at every stage of the journey.
To my mind, the reasons for this are clear. Patient involvement can ensure that the technology you develop is relevant and practical. Patients can help you identify and understand the problem that you’re trying to solve, keep the research on track and validate the specifications for the technology. If you develop relationships with patients early on, they can become advocates for your technology and encourage recruitment to later stage clinical trials.
With medical technologies, we often talk about technology push and market pull. The market pull tends to be seen as coming from industry or clinicians, and patients and the public have historically been pushed into the background. But fundamentally, medical technologies are there to tackle real life problems, and will only be successful in the market if they do. To understand these problems, we need to talk to the people that are impacted by them, the patients. By talking to them, we understand the lived experience, the challenges that they’re facing, the scale of the problem and the impact that a technology could make. And that’s true whether the technology is one that will directly be used by patients, or will be used by clinicians for – ultimately – patient benefit.
Meeting the gold standard
We made a determined choice to not only expect our projects to involve patients, but also to bring patients into the heart of the Grow MedTech programme.
Firstly, we made connections with established PPI groups, through third parties such as Versus Arthritis, Devices4Dignity, Leeds Biomedical Research Centre and other local NIHR-funded organisations. These groups helped us by reviewing our funding application forms and advising on how we involved patients in projects – our selection processes, whether renumeration was set correctly and whether we were valuing patient input sufficiently. Essentially, they helped us to follow best practice and meet the gold standard for PPI.
Secondly, we sought to have patient representatives on our funding panels (though we didn’t manage this for all of them).
We talked extensively with the NIHR i4i funding programme about how to produce better guidance for patients who might want to engage with funding panels or technology development projects.
And we also drew on some of the excellent PPI resources that are available, such as the NIHR Involve toolkit.
Any project that applied for Grow MedTech funding had to include PPI and it was a key factor in successful bids. The TIMs helped academics connect with relevant PPI groups and involve patients in projects from the offset in funding applications and proposals.
The most common form of involvement was through focus groups, where patients worked with academics to co-design, test and validate their technologies. The focus groups also helped academics understand the patient perspective and burden, and this informed the design of trials and helped recruitment to them.
Many academics embraced PPI enthusiastically, but it’s fair to say there is still some scepticism. Academics have to juggle lots of different responsibilities, and for some, this just feels like one more they’d rather not deal with. Sometimes they’d consider that, as they’re going to do a clinical trial, the extra effort of getting patients involved in the research in other ways just isn’t necessary.
As TIMs, our role was to change this view and help academics see the value of PPI. Luckily, we could point at plenty of projects where those benefits were already being realised. There was Sohel Rana at the University of Huddersfield, who drew on feedback from patients to help determine the specifications of a new composite material for use in prosthetics. That team have continued to involve patients in validating the technology, to ensure it meets the needs originally identified through the focus groups.
Or Lynn Barker at Sheffield Hallam University, who also gained feedback from dementia, stroke and brain injury patients on their digital tool to assess cognitive responses. As a result, they changed the instructions from visual to audio and adapted other elements of the user interface as well.
Convincing the sceptics
If the sceptics still weren’t convinced, then we would also point out that most major funders, such as NIHR or EPSRC, now expect patient involvement as standard. Any academic who can show that patients have already been involved in shaping the research from the earliest stages, will have an advantage over those who cannot. That should never be the only reason to do PPI, but it is an added incentive.
When we launched Grow MedTech and pledged to put patients at the centre of everything we do, I didn’t want those to be empty words. I didn’t want PPI to be tokenistic, or just a tick box exercise. We’ve worked hard to make the words reality and I’m proud of what we achieved. But there’s no denying we could do more.
While working through other organisations to involve their PPI groups has been fantastic, I’d love to see a dedicated PPI group for involvement in the development of medical technologies in the region. I’d like to have seen all the projects we supported involving patients as much as some of the very best did. Working with patients on the programme and through the projects taught us so much – but there is still lots to learn. And that’s yet another reason why patient and public involvement is so rewarding.