What Does the Future of Patient Engagement Look Like?
Chi Pakarinen
Natasha Ratcliffe
COUCH Health
@COUCH Health
Thomas Smith
Life Sciences Public Engagement Specialist

atient engagement in medicines development (and largely in health research) is nowhere near the aspired systematic engagement that brings value to all involved stakeholders. Why hasn’t it been taken up and why is it still not a widespread approach if it is said to be a win-win for all?

Chi Pakarinen, Thomas Smith, and Natasha Ratcliffe discuss the future of patient engagement and their new role as Patient Engagement Editors of DIA Global Forum. They also have an important question for you, the reader, at the end.

What Does the Future of Patient Engagement Look Like?

Chi: Very hopeful in my opinion. Although patient and public involvement has not been systematically and fully integrated into stakeholder processes and practices yet, we have made leaps and bounds in terms of acceptability, importance, and value of patient and public involvement in healthcare, medicines, and device research and development and health research. To advance to the next level, we need to apply and practice what we know, analyze the results, adjust the approach to fit each of our organizations, and aim to improve with every iteration and interaction. Although learning from others’ experiences is a desirable thing, we must also embark on our own patient engagement journey and work with patients to design how they can be best involved in co-creating the future treatment or care they need. Hopefully, this will look more like a longer term partnership rather than a one-and-done activity.

Tom: The future looks equitable! I think we’re going to be surprised at the value we can source within the patient community as training and skills continue to grow and diversify. The perception often endures, but patients are not just sitting on hospital beds, wearing pajamas, and waiting for something to happen anymore. Regulators want to know how this very expensive drug will benefit a patient’s life so increasingly relevant Patient-Reported Outcomes (PROs) are being brought to the Health Technology Assessment (HTA) table to justify cost, and they are persuasive because they have been co-designed with patient communities. Previously, involving patients in HTA beyond just their clinical data would have seemed laughable. I genuinely think we’re going to look back and laugh at how we used to do things in the same way that we do (in the UK at least) with smoking in restaurants; almost an “I can’t believe we used to do that!” feeling. Ambition and a willingness to try new things will compound as we build confidence in our approach and ethos. We must not expect perfection at this stage, and we cannot be afraid to fail.

Natasha: I think the future looks like more power for patients, a louder voice in strategic decision-making, and patients setting the research agenda themselves rather than at the invitation of pharma. There are examples of where these things are happening right now, but it’s being done in silos and isn’t widespread enough. The way that we currently engage patients in drug development is still on pharma’s terms, which by default means that it isn’t truly inclusive or equitable. If we’re committed to health equity, we have to change. We have to innovate, we have to be open to doing things differently to “how they’ve always been done,” we have to find new ways to reach people and incorporate different perspectives. From a behavioral psychology perspective, there are lots of methods and approaches we haven’t tapped into yet when it comes to patient engagement, so it’s exciting to think about all that we’re going to learn in the coming years to improve how we do things.

Who Are You And Why Patient Engagement?

Chi: I think Patient Engagement is democracy and human-centered design mashed into one and is needed to efficiently address the needs of the (aging) population. I see it as a way to do my part in creating a more attuned system that will hopefully also benefit my parents as they are aging, by encouraging and engaging them in making decisions about their own healthcare. Working within the patient engagement field has definitely brought a sense of purpose, and I am so happy to be able to contribute my skills to advance the field.

Tom: Patient engagement has given me every single good thing that I have in my life. It has put before me opportunities to help others, a community to connect with, and a career path to pursue. I am a patient, and I no longer live with shame but accept myself. Disease can be very isolating. Feeling valued and listened to can transform one’s self-esteem and lead to establishing connections that their illness has excluded them from. Being engaged as a patient can transform one’s economic situation and expand horizons. It often lifts people that would otherwise be difficult to employ in conventional work environments, giving them hope and potential—something I have experienced in my own life. But that’s not why I believe in it. I believe in patient engagement because everybody wins when it is done meaningfully and ambitiously. There is a relatively untapped ocean of moral, social, and commercial gold here.

Natasha: Like many people, I kind of stumbled into the patient engagement world. Although in my own work as a researcher I spent quite a bit of time talking to the public about science and psychology, the dialogue was one-directional. When I left academia, I was introduced to a new world where I was asking people what they thought, and it made so much sense. I was confused about why I hadn’t been doing that in my own work! But as much as it seems like common sense to involve patients in research, I could see that the structures and systems we work in weren’t designed for that input, and so something that makes total sense is actually quite hard to implement equitably. The “penny drop” moments in patient engagement meetings—when a patient gives feedback and you can see the researcher or study team member thinking “of course, why didn’t we think of that”—are really powerful. But we need to get to a place where those moments are no longer so exceptional. My motivation is to change the way we do research, so we have a culture where inclusive patient engagement is the norm, not the exception.

Call to Action to the Readers

We want to hear from you! What kinds of patient engagement topics are you most interested in reading about? What do you perceive as the biggest challenges to meaningful patient engagement?

You can respond to us in two ways:

  1. Send an email to Publications@DIAglobal.org with the subject: “Response to PE article – March issue”
  2. Complete the embedded survey below, or click this survey link, to respond anonymously.
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