How best can we ensure that people are put at the heart of healthcare research?
This was the central question explored at the Institute of Global Health Innovation’s latest Global Health Forum.
The event provided an opportunity to learn from a range of experts who gave their insights, learnings and experience on how to meaningfully engage and involve patients, carers and the public in research.
Known as participatory approaches to research, the speakers highlighted various ways this can be done in practice. From patient involvement to design strategy and co-production, these approaches have evolved over time in different disciplines. While these may use different techniques, they all share the same underlying principles and outcome: ensuring that people, or more specifically ‘target users’ are engaged with and listened to, so that research is centred on their needs.
Speaker Anna Lawrence-Jones, IGHI’s Patient and Public Involvement and Engagement (PPIE) Lead, noted the similarities between the definitions of public involvement and participatory health research. Both emphasise the importance of research being carried out “with”, not “on” people.
This means that people are not passive subjects of research, but rather can be involved in coming up with ideas, designing and undertaking research.
“For example at IGHI, we have a Research Partners Group who gather regularly to meet researchers and talk about research projects, feeding in their own experience about their conditions and interactions with the health service,” said Lawrence-Jones. “They bring experiential knowledge.”
To truly understand people’s beliefs and values, and therefore their needs, it’s important to connect with them on a deeper level, argued speaker and design strategist at IGHI’s Helix Centre, Pip Batey. “These invisible aspects are hard to measure and are therefore often overlooked, but they drive our behaviour,” she said.
"We immerse ourselves in people’s environments so that we can learn from them and capture their different needs." Pip Batey Design strategist, Helix Centre, IGHI
“Strategic design taps into these. At Helix, we immerse ourselves in people’s environments so that we can learn from them and capture their different needs. That enables us to begin to understand the system, and in turn discover where the opportunities lie to make improvements and drive sustainable change.”
Batey gave an example of one of IGHI’s most recent endeavours to ignite systems change – Feedback First, a web-based toolkit that hopes to help researchers and healthcare professionals make the most out of patient complaints or “feedback”.
In order for new tools such as this to be successful, they must satisfy people’s basic psychological needs, said speaker Prof Rafael Calvo from Imperial’s Dyson School of Design Engineering. He focused on the example of autonomy, a common source of frustration when there is a lack thereof. Supporting autonomy requires systems to give people a sense of ownership and to clearly explain their rationale.
“Doctors have discussed autonomy-supportive language for a long time,” he said. “For example using open-ended questions, which helps to build a rapport with patients. Using controlling language hinders this.”
Listen, learn, prioritise
Listening to and learning from patient and public communities is critical in research, argued speaker and senior BMJ editor Tessa Richards. Failing to do so means that healthcare research poorly aligns with the views and priorities of those it is designed to benefit.
"Patient-centred research changes hearts, changes minds, and changes practice." Tessa Richards The BMJ
Yet doing it well through people-centred research can bring a wealth of benefits. “Pharma has been leading the way in assessing the financial return on patient-centred research,” she said. “In one instance, patient involvement was suggested to accelerate the launch of a product by two and a half years and give a several hundred-fold return on investment.
“But there are less tangible benefits, too. It changes hearts, changes minds, and changes practice.”
Final speaker Matt Walsham, policy and campaigns lead at Partnership for Young London, also found no shortage of benefits from the engagement projects led by his organisation. Working with young people to carry out peer research benefitted the output, the organisations and the young people themselves, endowing them with soft skills like interview skills, boosting their confidence and helping them feel empowered.
But he also rounded off the event by highlighting the challenges, such as engaging in the process merely as a tokenistic gesture, the lack of clear standards of good practice and the time and resources required to be meaningful and effective.
This event started the conversation about how we can better share learnings between these approaches. If you’d like to join the conversation and explore our event in more depth, you can watch the slides in the YouTube video below (apologies but due to a technical fault, there is no sound).
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