Not Just Patients

Galvanising Multistakeholder Collaboration for Meaningful Change | Derick Mitchell

• Caitlin and Clarinda • Episode 23

Share episode

Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.

0:00 | 1:02:47

Join us for an inspiring conversation with Derick Mitchell, Executive Director of Patient Focused Medicines Development (PFMD), adjunct professor at Trinity College Dublin, and a dedicated leader in patient engagement and multistakeholder healthcare innovation.

Derick’s journey has taken him from translational research to his previous role as CEO of IPPOSI—the largest patient network in Ireland—where he spent close to a decade championing partnerships between patients, government, academia, and industry to shape patient-centered health policy. At PFMD, he now leads international efforts to bring all stakeholders together to transform healthcare for and with patients.

In this episode, we delve into why multistakeholder collaboration is so crucial for patient engagement (and tough to do well!), and how we can move beyond good intentions to lasting change. 

Derick shares practical examples from Ireland and globally; tackles the barriers that keep patients’ voices from truly shaping decisions; and offers actionable steps for building more inclusive, impactful partnerships. Whether you’re a patient, professional, or changemaker, this episode is packed with insights on turning collaboration from a talking point into real, everyday practice.

Chapters

  • 0:00 - Introductions and episode overview
  • 2:00 - Derick's journey into patient engagement
  • 6:04 - Challenges with embedding patient voices
  • 12:46 - Defining value for different stakeholders
  • 17:09 - Ensuring representation and diversity
  • 26:45 - Rewards and incentives for collaboration
  • 28:46 - Real-world examples
  • 33:22 - Evolution of collaborative patient engagement
  • 37:00 - Why collaboration matters for healthcare transformation
  • 44:44 - Barriers to multistakeholder collaboration
  • 50:13 - Advice for driving collaboration
  • 58:44 - Reflections with Caitlin and Clarinda

Resources & abbreviations 

Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com

Derick:

I could list off about maybe 10 or 12 stakeholder groups that you would think would have a right to be involved in decision making. But that right doesn't always exist, if I'm being honest.

Caitlin:

Hi, I'm Caitlin,

Clarinda:

and I'm Clarinda. And this is Not Just Patients,

Caitlin:

a podcast where we break barriers to meaningful patient involvement in healthcare.

Clarinda:

Thank you so much for joining us today. Our guest on this episode is Derick Mitchell, and we're going to talk about the power of multi-stakeholder collaboration to drive patient engagement.

Caitlin:

Derick's background combines patient advocacy, translational research, and multi-stakeholder collaboration at the national, EU and global levels. He spent a decade as the chief executive of OPOSI, the Irish platform for patient organizations, science and industry, where he spearheaded a number of collaborative partnerships between patients, government, industry, and academic science aimed at putting patients at the heart of health policy and innovation. Under Derick's personalized leadership, IPPOSI became the largest patient network in Ireland. Derick is an adjunct professor in clinical research at Trinity College Dublin and holds a PhD in molecular medicine. He is currently the Executive Director of Patient Focused Medicines Development, or PFMD, whose goal is to improve global health by co-designing the future of healthcare for patients and with patients. He is also the executive director of programmes at the Synergist, which brings together complementary stakeholders to solve societal issues. Thanks so much for joining us today, Derick.

Derick:

Thank you.

Caitlin:

So, Derick, this is our first episode of 2026. But at the end of last year for our 2025 year-end episode, we asked a lot of different people what they wanted to see more of in patient engagement this year. And a lot of them mentioned that they wanted more collaboration amongst different stakeholder groups and really bringing patients into the fold as a key collaborator. Your roles across IPPOSI, the Synergist, and now PFMD have really embodied this ideal of multi-stakeholder collaboration. So it'd be great if you could start by telling us a little bit about your story, the work that you do across these different organizations.

Derick:

Sure, happy to. And I guess my own background and what brought me into this world of patient engagement was threefold, really. My original career was in research, and that was looking at what you call translational research, trying to bring new innovations from the lab into medical practice. And we were focusing on kidney inflammation. But it was during that period of my work life that I started volunteering for many types of science communication and patient advocacy efforts that were, I guess, outside of the lab. And it was through that work that I then exited the lab because I realized that I'd found, I would say, my true passion, which was to put people into processes. So processes that maybe weren't designed originally for the kinds of qualitative research that I hadn't to that point in my career had a huge amount of experience in. So I moved quickly from, I guess, the bench to the bedside from that perspective of really incorporating both public and patient, but also I think a more human-centered approach to both research but also to care. And that brought me into the world of IPPOSI, which is a patient-led platform which was started in Ireland back in 2007 and has grown over the years, as you said, to become probably the largest network of patient groups, but also academic science, research, and industry in Ireland. So I was CEO there for the best part of a decade, and what that brought me was a huge amount of experience in terms of managing multi-stakeholder projects, programs, initiatives, things that were designed with patients and based on the need, the representative groups of patients in Ireland, but bringing together other stakeholders to ensure that these could actually be not only just realized or delivered, but indeed piloted and scaled, which I think is one of the real key issues for patient engagement initiatives, to try and look across different jurisdictions, to try and look across different siloed areas of healthcare, to find maybe where practices can emerge as from good to best, but also the types of relationships that need to be built between quite often very different stakeholders. So I've definitely found my own calling in that respect in terms of understanding where other stakeholders are at in their workflows or their environments, and tailoring the approaches to ensure that yes, patients are leading and patient perspectives and lived experience are included, but ultimately towards a shared purpose that I think anybody who works in healthcare would definitely agree that if the shared purpose is the improvement of health outcomes for as many patients as possible. Well, I think that anybody who works in healthcare can get behind something like that.

Clarinda:

So it's interesting that you say that, because I would argue that I don't think that's necessarily the case. My career trajectory has been a little similar in terms of the arenas I've been in. Well, I started out working in academic publishing, so a lot with researchers, then with medical communications, so a lot with pharma, and now I work in patient advocacy. And I would say that it's very difficult to get researchers to think beyond academic research, for example, involve patients in research, or to be able to see beyond that sphere. For example, we had to really, really push for science communication in formats that were accessible, uh, plain language or infographics or you know, things like that that could reach beyond academic circles when we were talking to academic researchers, for example, or then when you're talking to pharma, the idea of bringing patients into the room to design clinical trials, that's been such a long journey to make that happen. So, why collaboration seems like it should happen, and it seems so obvious that should be the goal and that can only achieve exponential outcomes. It doesn't seem like a very natural approach for a lot of people. And to be fair, it is because they are exposed to people doing the same kind of work by and large. So they're not necessarily developing that mindset of putting themselves in another person's shoes or understanding what that perspective can bring to the table. So, did you manage to actually get researchers that you work with or all these different stakeholders to wear that kind of hat in these collaborative processes and start this whole process?

Derick:

Yes. Well, I think what you've described, Clarinda, is certainly a very common experience of anyone who is trying to embed patient voices into policies and processes that were maybe not originally designed for that purpose. And I think that there's a huge amount of variability that still exists between, as you say, different communities or different contexts or different organizations, even. But when I look at it from the PFND perspective, which is a global level collaborative initiative, the overall pattern and the trend is still towards a positive because we do see an increasing both amount of practices. Defining those practices as good, bad, or indifferent is probably an ongoing process because what good looks like from one stakeholder's perspective can often be quite different to what maybe a patient group or a patient community views as what good is. But an awful lot of organizations, I think they're more open to creating what I would call safer spaces so that you can actually have a neutral space that can convene the different perspectives. Because I think that having a facilitator or an independent organization that can act in that way is increasingly seen as being a vital part of just nurturing that relationship. And I think that yes, it can be combined with maybe the more traditional advocacy-based approaches where you have to beat that table, you have to knock on that door. It's a fight to try and elevate the voice of patients in the decision-making processes that are often made on their behalf, but without their involvement. So it's this combination of approaches that I find is probably the biggest obstacle to try and embed this, because it will take a combination. There's no one way of going about involving patients in healthcare decision-making, which is ultimately what any of these processes and policies is about. Because whether you're a researcher or a healthcare professional or a person working in the pharmaceutical industry, you exist within an ecosystem of different ways of performing and different ways of doing the work that you're either trained or paid or supported to do. And what I've been doing, and what maybe PFMD has been doing, is really breaking down what are the cultures that exist within those different processes? What counts as an incentive to somebody who is working in a particularly maybe niche or specific area, and how might that person just maybe help themselves towards what we would call a more meaningful, person-centered way of performing the work that ultimately they're trying to achieve on behalf of patients. Sometimes all it takes is small little steps to try and nudge people towards a process change or a policy change that just makes things easier for everybody. What you've described, Clarinda, is that maybe when you're speaking to people who are maybe yet to be convinced or haven't quite found the incentive that motivates, that can be a situation where people can get quite frustrated quite quickly, which is where coming back to the point I made about just having a safe space, a neutral space for those concerns or perspectives to be aired at the very earliest possible stage, so that you can be absolutely clear about what is the objective and the purpose of the engagement to begin with. Because I find that an awful lot of people who are motivated about engaging, they can't actually see what the end goal is of the engagement. They fail to kind of start that process on the basis of identifying what the shared objective is for all sides of that engagement. So that's something that needs to be always worked on and always encouraged as part of any engagement process.

Caitlin:

Yeah, that's that's so interesting. And I think I guess to speak to the challenge that Clorinda raised and what you're saying, when you do have kind of these meetings or come togethers of these different stakeholders, quite often they're not in the same room together. You know, it might be a conference or something for researchers, even if even if it's on patient engagement, there might be the odd patient there to sort of speak, but it doesn't bring in policymakers as well. Like that's quite often a separate piece, and there might be a policymaker meeting or a pharmaceutical meeting. So they're actually all talking about multi-stakeholder collaboration or engaging patients, but all in different rooms, and that kind of speaks to what you said about having their own processes and cultures, and then actually being really difficult to bring more than one person into the room. And the other thing that I was thinking is actually when you said, you know, actually the end goal is to improve healthcare outcomes, that's of course what everyone in healthcare should be thinking. The way that different stakeholders measure success makes that difficult because actually, although what we're trying to do as an end goal is improve health outcomes and patient lives, someone in HTA might be measured on cost effectiveness. That's their sort of metric for success. Whereas pharmaceutical, obviously, they're making products that really help people, but they do have that commercial goal in mind and it's about sales, whereas patients are trying to sort of make make lives easier for patients and support them outside of their healthcare path as well. So not just about treatment but about holistic care. So while the very, very end goal is the same, I think maybe there's a little bit of miscommunication in terms of how do you make them see that that will actually benefit what their sort of metrics for success are. And I think we've had these conversations a few times as well, and I think you've alluded to it too about just being able to demonstrate the value in a way that each different stakeholder will understand and will resonate with them. And it's uh almost about learning how to hook them in. Yeah.

Derick:

There's the magical word value, and how you can capture and measure the value of patient engagement, but then, as you say, then translate that into something that's ultimately understandable from somebody who maybe views value from a very different perspective. And certainly you you brought up the whole area of health technology assessment, and that environment does look at value in maybe a strictly traditional way of looking at it from a clinical outcomes or indeed an economic valuation basis. But I'm definitely seeing patterns that are emerging within that health technology assessment framework of decision making. That value piece is becoming much more crystallized. But if I'm speaking honestly about where HTA agencies are, they're part of a movement that is all about evidence-based healthcare policy and processes. And that currently is under attack from an awful lot of sources coming from both political and more social movements around more misinformation about what constitutes good quality evidence to support either healthcare systems decision making or indeed individual public and citizen decision making about what represents an innovative intervention. So the role of HTA agencies probably needs to build more trust and transparency about what way that they go about doing their role and their business. And I think that patient engagement can play an absolutely crucial role in reinforcing that role that HTA agencies play. And certainly I've struggled to try and convince patient groups that this is an area that A, they need to be spending more time and resources building their capacities and capabilities in, but ultimately that this is their contribution to improving overall health outcomes for populations beyond their communities. So the more the patients are involved in this and the more that they can see the benefits of it and the impact and the value of their work, the better our healthcare systems will be.

Clarinda:

Yeah, right. Yeah, we have had some really interesting conversations about patient engagement in HTA and in each of these different areas of the healthcare process overall. And so coming back to this whole concept of multi-stakeholder collaboration, and like Caitlin mentioned, you know, there aren't too many rooms where these different stakeholders have an opportunity to come together. I was privileged enough to attend the Patient Engagement Open Forum last year. And then later on, both of us attended PPI Ignite. Those were two very special events where different stakeholders actually came together. You could see people wearing different hats, but actually in the same room to talk about patient engagement. So maybe, Derick, you could just talk about what multi-stakeholder collaboration actually looks like. And who would you say are all the different stakeholders you would expect to be involved in talking about patient engagement?

Derick:

Well, I think your first starting point is that it's very difficult to bring all the stakeholders together because certainly when you talk about health and health care, I could list off about maybe 10 or 12 stakeholder groups that you would think would have a right to be involved in decision making. But that right doesn't always exist, if I'm being honest. When you talk about those who have a stake in healthcare, there's none bigger, in my opinion, than patients. And patient representative groups are the channel whereby you can have that representative voice, but also that evidence that often is lacking in decision making that's coming directly from the lived experience. So I think for an awful lot of multi-stakeholder initiatives in healthcare, there is a tendency to use proxies as representatives of certain perspectives, or be they stakeholder specific, or indeed what you might call context specific. So if your multi-stakeholder common purpose is to change a particular aspect of healthcare, then yes, you need to go and identify the stakeholders involved. But in the process of trying to identify those stakeholders, sometimes you hear of uh representatives who are not quite as representative as maybe people think. And I think that that element of I wouldn't say misrepresentation, but not full representation is probably a key challenge for an awful lot of multi-stakeholder initiatives. Certainly, I don't speak for all patients. I don't think anybody does. But if you are a true patient representative, you have to be wearing that hat on the basis of a collaborative approach to working with other stakeholders. You have to have lived experience behind your own perspective, be that your own or indeed coming from a community. That's definitely the the kinds of things that, from a representation point of view, mean an awful lot to those patients who maybe are not in the room, but are always interested as who is representing the patient voice in that room. And that can lead to challenges from those who wish to make this as meaningful a process as possible. But what I find is that even if you have identified maybe the most appropriate patient representatives, and I use that word plurally, because I always feel that it's a large burden to put on an individual. To represent as many patient perspectives as possible. But what I find is that when multi-stakeholder initiatives are being designed and hopefully co-designed, that the connectivity between the patient representatives and either the community that they're representing, or indeed others who are outside, be they within that community of patients or from more civil society or more public representatives, because that connectivity isn't always thought about the role of the patient representative in a multi-stakeholder context. And it's that connectivity that can sometimes lead to much greater impact of the patient voice being part of the process. Because not only does that hold the patient representatives to account, like all other representatives should be, it also provides them with the support that if they find that during the course of the initiative that they weren't able to act in a truly representative way, that they have a support system that they can rely on whereby others can help them channel that collective patient voice. So I do feel that individual experiences are important as part of multi-stakeholder initiatives, but collective experience is far more impactful when you're looking at trying to change healthcare decision making. So that would be probably where I think an awful lot of current practices are at. If you're asking where I see the current leading edge of this area, yes, we do tend to rely on individuals to be that voice of patients. It needs a more collective approach, and all stakeholders need to be part of ensuring that yes, the experience of those patient representatives as part of panels or advisories or indeed collectives is as positive as possible, but they have an opportunity to encourage the next generation of patient representatives to ultimately replace them as part of that. Because I think that there is a tendency to just rely on individuals who may not always be healthy, if I'm being honest, and they need to maybe even remove themselves at a certain time point so that others can feed into the process of decision making. So that sustainability of patient representation is a key challenge right now.

Caitlin:

Really interesting, Derick. I think we could talk for another hour on this particular topic about making sure that the right representation of patients are in the room. And I think actually we covered this quite a lot in our podcast episode with Lara Bloom when we were talking about diversity, inclusion, equity, because you know, quite often the advocates, the people who are talking, the people who can reach are out there, uh maybe the sort of more educated patients, the more active ones, and they're not necessarily representative. But I also want to flag, just because I guess we're talking about multi-stakeholder collaboration here, I suppose we can also apply a similar scrutiny to the other stakeholders in the room. Because I imagine in these conversations, potentially it would be, for example, someone who, from a clinical perspective, might be really involved in academia and research, but may not have the same perspectives as someone who's in a district general hospital treating patients every single day. Likewise, maybe a researcher who isn't sort of doing the lab work or who's the one speaking to the patients, or someone in HTA who's looking at it from a really high national level, whereas they're not sort of considering the impact on a local level. So I suppose what's interesting is just how to make sure that that diversity and interestingly the conversation does seem to be around is this patient the right person? Are they representative? But can we also apply that to the other stakeholders in the room?

Clarinda:

Yeah, that's a really good question. I think that two prominent debates that we keep hearing in patient engagement and advocacy are one that the export patient is too export to be representative of the average patient. And that one patient can only represent themselves and not the patient community unless they are actually representing the patient organization. If they have a disease area, they're not actually representing all patients with that disease, they're just representing themselves and their own lived experience. So those are two things that we keep hearing in patient engagement. But I still think that they are very, very valid and important voices to bring in. And similarly, I would say the same for all those other stakeholders at the table. And as long as there is continuous diversity around the table in terms of the representation across stakeholders, and that the tables get mixed up every now and then, and that it's not necessarily the same people every time, perhaps. I think that's more important. Because the truth is that not all patients are necessarily interested in being out there and being those advocates, which is why it might be the same patient experts who are showing up and doing that work. And that's fine because that's their calling and that's what they're equipped to do. And it might be the same for other stakeholders because it's not like academic researchers don't have more than enough on their plate for them to actually make the time to attend a patient conference, right? But they're you, as an academic researcher, you chose to do stuff on the patient side because that was something that you felt inclined towards despite your tremendous workload, which I'm sure you had more than enough of. It's also a lot about individual inclination. And I think that collaboration might be a gene that some people have and some people don't have, perhaps. I don't know. But if you have it and if you want to be in a room where other people are collaborating, then you should be in that room.

Derick:

Yeah, you make great points, Clurilla. I think what I find is that people can be educated around collaborative approaches and how you can, I think, create those spaces as opposed to maybe the academic route tends to recognize expertise rather than collaboration. And it's it's certainly an ongoing debate in academic circles about the extent to which one can be encouraged over the other. But I think what the evidence shows is that collaborative research is more impactful than individually driven research. And that comes back to what I would call the incentive to collaborate. What are the conditions that create a collaborative environment? And the incentives for researchers or healthcare professionals can vary depending on your own background and your own motivation. But I think that people should be rewarded for engaging with patients and rewarded for collaborative research and development. And I find that the rewards that are currently there could be definitely improved. And there are ways in which you can reward people, and I don't mean just from a financial perspective. It can be your own reputation, your own career path. So I certainly think that that would be one way in which we can definitely promote, as you say, a more collaborative approach to healthcare decision making. The other thing that strikes me about what you were talking about was an example from within the Irish rare disease space that I think managed to approach that representation issue. And I completely agree with you that very often the ability for patient representatives to be representative is applied in a completely different way when you look at healthcare professionals and clinical perspectives. And I have yet to be in a meeting or on a panel or a part of an advisory whereby the clinical representation was called into question, uh, even if there was one representative, whereas the patient representation invariably this would be applied through a completely different lens. So that's an unfairness that exists within the system that does need to be, I think, called out again and again because it is unfair. But then to kind of give you an example of how the challenge of being representative was overcome. So the Irish Rare Disease Plan was being revised recently and it was published last year, the revised plan. But in the process of revising the plan, this question about for an area like rare diseases where you have hundreds, in fact, thousands of individual conditions, how you could bring a representative collective voice into the process of revising a national plan was thought about, and the umbrella groups of patient organizations in the country were engaged to devise a way in which this could be representative. And what it combined was yes, we still needed individuals with lived experience, but also the collective experience. We needed them on the working group that was going to look at revising the plan. But we also needed, in parallel, a forum that would invite anybody with an interest in this area to come and to hear what even the initial ideas were about areas of priority under the revised plan and how lived experience and multiple perspectives could feed into that process. And the forum was given a sense of agency. That came from the very top from both the minister and the chair of the committee, who were very open to this way of ensuring that representation was as inclusive as possible. And indeed, what that resulted in, and yes, the forum was very influential in the ultimate priorities within the plan, but that forum is being taken forward in a different way now for implementation of the plan, which requires a different set of skills and a different set of responsibilities that need to be defined as part of implementation of that plan. But the representatives who ultimately will come from the members of that forum, and it was over a hundred strong forum, the representatives are being identified in a very different way to those who maybe initially indicated their interest. So this way in which you can utilize the process of engaging inclusively to identify the representatives who are best suited to roles and responsibilities that are of a more maybe technical nature, of a of a more specialized nature. Yes, and that's where expert patients can play a role, but it's all the time thinking about the connectivity between those roles that are increasingly being identified for patients and the broader patient community, which is representative by this revised forum. So we still have the people on the panels, we still have the expertise that's necessary, but those are being well defined and they're being supported in the roles that are there for them. So for me, that gives me, I guess, a sense of ownership and a sense of responsibility. That needs to be captured in a way that others can take forward in different ways. That's certainly something that I take on, you know, in my previous role in IPOSI, but also particularly in my role in PFMD, where we're looking across jurisdictions, we're looking within countries, we're looking at how you can tailor approaches based on the conditions that exist either currently or the conditions that we want to promote as part of this good to best practice approach. So that's hugely motivating for somebody like me to be part of a process like that and to help shape it and co-create it. But to work with the other stakeholders, the other civil servants, the public servants, the researchers as part of that process. In fact, the impact on them of being part of the process was probably just as consequential to having a structured, well-supported patient engagement process, because they were able to really appreciate the value of doing this in a much more systemic and a systematic way.

Caitlin:

I mean, that's such an incredible example. And I think Corinda and I were both shocked when you said the forum was over a hundred people, because I'm sort of used to thinking about a patient forum being five or six.

Clarinda:

And for rare diseases, for air diseases, yeah. Yeah, absolutely.

Caitlin:

So it sounds fantastic. And I wonder if I could probe either specifically on this project or sort of more generally, you know, we've spoken around it about how good it is to involve these people, but what is actually that value of bringing all of these different stakeholders on board? Because I think if that was understood, then that's almost the reward that we were talking about earlier, right? It's about how does it actually improve the outcomes of whatever you're trying to achieve, and what's the value it brings to each of the different stakeholders within that group.

Derick:

So the biggest thing that I've seen over the years in terms of the impact of patient engagement on the other stakeholders is that I think maybe traditionally there were two things associated with patient engagement that I'm no longer seeing, which is one is that it was a very risky enterprise. There was definitely an aversion to this. So I think that for those who operate in healthcare, they prefer more predictable, possibly imperfect ways of making decisions. Yeah, as in they may not be as informed, but they're more predictable from their perspective. But what I've seen in more recent years is that because of the evidence of not engaging patients and devising multi-stakeholder ways of bringing their voices in, that the risk is actually more significant of not doing it rather than doing it. So I think that that aversion to engaging with patients is not only reduced, I'm now seeing it now part of what we would call the norm. And this is really important from a PFMD perspective, that we we talk a lot about patient engagement being the norm. Well, the question I always have is what does that look like? Is that 20%, 50% of decisions contain a representative voice of patients? Is that something that you can definitively say, well, we're definitely over a certain threshold? So that's really important that what the norm looks like needs to be defined. Because if I'm being honest about where we're currently at, I don't think we're there yet. But it's definitely something that we want to see, and we want to work with other stakeholders to ensure that whatever context you're working in, that this can be part of the norm, and that when I move on in my own world, that somebody else will be coming behind me, going, Well, I can do better, I can move this even further. So that's something that I kind of hold deep uh inside me that I don't see myself as being this evangelical patient engagement champion. I see this as that that I'm wearing a jersey as part of a team, and I only get to hold that jersey for a certain period of time. And yes, sometimes that jersey does represent me because I am a team member and I'm working as part of a collaborative, a collective, but the jersey is not my own. And at the end of the day, I will be passing that jersey on to somebody else. And if I can make my time in that jersey as impactful as possible, well then that's my reason for being here.

Caitlin:

We always talk about hats, so I'm really happy you mixed it up and I enjoyed that analogy.

Clarinda:

Yeah, so we're on the team, Derick, because we've been doing this podcast for the last two years, and I think that we can definitely say that patient engagement is more of the norm now. I mean, we just, in fact, for our last episode spoke to five different people in the community, all of whom said how far patient engagement has come. And I think that anybody you speak to working in and around healthcare will vouch for the fact that patient engagement has come a long way. I want your thoughts on how crucial multi-stakeholder collaboration is to taking that even further, perhaps.

Derick:

Yes. So I think there's many examples from around the world of where multi-stakeholder initiatives have advanced patient engagement, but have also, in parallel, advanced, I think, the work culture of healthcare. If you talk about where multi-stakeholder collaboration maybe currently is and where it probably needs to be, it's in the whole area of what's called generally transformation of healthcare. And you hear that term being used in association with multi-stakeholder collaboration an awful lot more now than maybe before. When initiatives like, say, the Innovative Health Initiative in Europe or the PCORI in the US or the CTTI, these multi-stakeholder collaborations, which are designed to be pre-competitive in their approach to furthering innovation, that when they were being originally designed maybe 15 years ago, the whole concept of multi-stakeholder collaboration was very early. It was nascent within the healthcare ecosystem. And very often these initiatives were being designed, yes, to bring stakeholders together, but I think the ultimate purpose or the ultimate impact of these was to a large extent uncertain. Whereas now you're in a situation where maybe even post-pandemic, that when we're talking about either the resilience or the sustainability of healthcare, that the transformation of health and health systems is invariably the lens by which multi-stakeholder collaborations are being seen. Because transformation requires three things. It requires, yes, technology, but more importantly, it requires people and it requires processes. So the combination of those three things is very much embedded in multi-stakeholder collaborations. And I think that the benefit and the impact of these collaborations is being felt because to solve these very complex challenges that are there in healthcare, that the value of the multi-stakeholder collaborations is being viewed much more positively now. That we have these examples coming from different regions of the world. Now, where we need to probably get to is that this area of transforming our health systems needs this, I guess, more systematic and more sustainable way of engaging patients and their representative communities to be part of that decision making. So within my own experiences within the IHI collaborations that again have this pre-competitive mindset from the very beginning of the consortium, whereby you have public and private partners working together, figuring out how they can work together to address these highly complex challenges. And I'm starting to see now within IHI, which is, I guess, the successor of the Innovative Medicines Initiative, not only is it broadening out its remit to include areas of healthcare that are beyond maybe pharmaceuticals and medicine, but they are looking at the structure by which they engage patient groups and individuals as part of individual projects, but also to bring a consistency across projects so that we can just make it easier for patient groups to engage. And I know that there's similar initiatives happening in the US in terms of the CORI, which thankfully has maintained its funding despite the current political uncertainty there. But again, they're looking at bringing this consistency to the way in which not only the way in which we engage, but the way in which you generate, I think what I call agency as part of these projects and programs for patient communities. Because that agency is something very tangible for patient groups. If you feel like you're part of decision making and you communicate back to your members and stakeholders that this is important for us and this is how we channel patient voices into these new innovative ways of addressing challenges, then that really helps with, I guess, the convincing argument whereby you're convincing the public funders and indeed the private funders to keep investing in these pre-competitive initiatives. Because I think that certainly if I look at patient engagement and the way that it's been viewed maybe historically, is that the way in which it's been measured by stakeholders is more based on reputation rather than operation. The reputation, yes, of either public agencies or individual companies is very important as part of decision making. But we need to get it into operations. We need to get it into the workflows, we need to get it into the normal way in which either innovative new ideas are brought forward or indeed decisions are made. So that would be the way in which I think that this pre-competitive mindset that's emblematic of multi-stakeholder collaborations is something that really does need to be nurtured and it needs to be captured because I think that the competitive mindset is very different to that. And I think that the impact and the value of patient engagement can be most felt within a pre-competitive mindset.

Clarinda:

Thank you so much for so many of those examples that made things really tangible and clear. And I think that that differentiator of a pre-competitive mindset is crucial because I mean, even at the Patient Engagement Open Forum, the thing that really got me charged up was seeing these everyday competitors sitting around the same table and brainstorming solutions, you know, which is something that you don't normally see. You see it at some hackathons, you see it at these initiatives, again, these multi-stakeholder initiatives where people just stop wearing those everyday commercial hats and really come together for a bigger cause. And yeah, I think that there's just greatness there.

Derick:

What you've just described, Clarinda, is certainly something that I have felt as well. And having been at Patient Engagement Open Forum for a number of years, and now being behind, I guess, the engine that's driving it, that's something that I think is very unique within that safe yet brave space that does actually reward what I would call a little bit of daring, daring to be different, daring to ask the difficult question, but then to formulate it in a way that you can co-create either a way of addressing this or indeed a solution that would be multi-stakeholder. And I think that the POF event is quite unique in that respect. And I think an awful lot of other events could learn an awful lot about the way in which you can create that sense that you're in a very unique space and you want to contribute, and your contribution is very much valued as part of that.

Clarinda:

Yeah, yeah. I think we've kind of pre-empted the response to my next question a little bit, which was that multi-stakeholder collaboration is obviously so valuable, but there's still so little of it. And what are some of the barriers? And one of the obvious ones that comes to mind right now, based on what we just discussed, is that there's generally so much competition around. Would you say that that's one of the primary barriers? And what are some of the others?

Derick:

I think that one of the things that we need to probably always be vigilant about is about, I guess, what I would call the healthy degree of skepticism that is often part and parcel of our world of trying to bring multiple perspectives and stakeholders together to address a common problem. And skepticism can be good because it means that you can actually identify maybe more tokenistic efforts. I don't mean that anybody sets out to achieve tokenism as I don't think anybody has ever set out to do it. But what it does is that it allows people to recognize maybe where there are gaps and maybe where something isn't as maybe robust as you would like, or maybe even as inclusive as you would like, because that's something we've talked about. But I think in helping to address skepticism, the provision of guidance to anybody who is coming into a process, recognizing yes, we need to work on this across different silos or work on this together, having a guidance that tells you, well, no matter what the challenge, co-creation is the solution. And having those guidances in place that can be tailored, yes, to the context in which you're trying to address a certain problem, but can give you the sense that okay, somebody else has been trying to figure this out as well, and that I'm not alone in trying to devise a way that is not tokenist, but is based on maybe the level of resource that we have or the amount of time that we have dedicated to this. So guidance can help address that skepticism. The other probable area that everybody talks about is just how fragmented the environment can feel and in fact is, because certainly if you look at healthcare and the way it is set up, it is set up to be siloed. And the yes. So how you can use multi-stakeholder collaborations to break down some of the silos that exist is part of well, it's one of the reasons why PFMD exists, and one of the key challenges around us is that not only are the perspectives fragmented in terms of people who would consider themselves representative of a certain group, not only are they fragmented in terms of a geographic point of view. But I think one of the key aspects is that the needs and objectives are always fragmented in healthcare. And the ability to actually find the common ground between maybe a patient perspective versus a clinical perspective is probably one of the key aspects of fragmentation that we definitely need more work on. And part of that would be that patient communities need to be in medical societies and environments that are predominantly clinically led, as well as clinicians and healthcare professionals becoming more involved in patient community initiatives. So I think that anything that promotes a crossing of that divide, whether it's a support for patient groups to attend international conferences, whether it's, as you say, kind of maybe more braver spaces that are designed to really unpick some of the key challenges from the patient perspectives, like hackathons, like P-Off, like those spaces that promote collaboration, those are the kind of things that really help with reducing the fragmentation that exists in the current system. So those are probably the two areas that I would emphasize. There's a whole load of other aspects of multi-stakeholder collaboration that I could go into. But as you say, it's probably best to kind of focus in on the things that I think can be addressed in either the short and medium term, because we do have programs and initiatives that are designed to try and really address these challenges that we're currently facing.

Caitlin:

And that's the perfect segue, actually, Derick. Into our next question. So this has been such a fantastic conversation. It's really great hearing about actually how far this multi-stakeholder collaboration has come and how many incredible initiatives and examples there are out there. And hopefully, the more people talk about these and the more people share their learnings from these experiences, the more people will understand the value of that collaboration and it can become the norm and best practices can form. And I think that's a really exciting and encouraging thing to hear about. But of course, there's still a little bit of a way to go, as we mentioned, there are still those barriers in place. So looking then to the future, what steps do you think different healthcare organizations or groups can make to ensure that multi-stakeholder collaboration is more of a norm in the next five years?

Derick:

Okay. So how long do I have to answer this? This would be the something that I live and breathe every day. So I guess there are actions that I would think are common to different stakeholders, but then there are probably actions that individual groups probably need to be thinking more clearly about and actioning within their own worlds. So I think that in terms of maybe the common actions that I think everybody should be doing would be, well, first of all, would be that point about treating patient engagement as operational and not just reputational. I think that for me would be a key thing to embed within processes and policies. I think the investment in what I would call capability building would be essential for all stakeholders to action. And that capability is something that would be different according to the different stakeholders. But I think what I'm emphasizing there is that we're not just relying on moments of inspiration through engagement processes that often people can feel and appreciate in the moment, but doesn't translate into a capability that can then be taken forward outside of the moment. And you can invest in training and education and skills-based learning, but that investment requires resource. So that's definitely the second point I would say. The third point would be that everybody should be documenting and reporting on what it is you're doing, and to do that very transparently and openly as possible. So that an engagement process that remains within the confines of a scientific publication that's behind a paywall is not as impactful as capturing it in a way that actually makes sense to maybe that broader public that particularly the research and the clinical environment have not been good at reaching just yet. Because by communicating the way in which you're engaging and communicating the impact of that, that can actually have a massive both reputation and operational impact, if I'm being honest, about the role that your organization or that your community has within the healthcare system. And then the last thing that I would probably emphasize would be you need to have very clear definitions of what patient engagement looks like to you, what the impact of that patient engagement looks like to you. And we need to be using the same terms here. We need shared language, we need very understandable policies that are not using the kind of technical terminology that often gets used because people are more familiar with it, but doesn't lead to that shared understanding that everybody can get behind. So those are kind of the four cross-cutting actions that I think would be independent of where you're coming from. If I'm thinking honestly about patient organizations, that certainly the ability to track how the engagement influenced decisions is something that I think an awful lot of patient groups could become better at. The advent I think of artificial intelligence is going to help an awful lot of patient groups to be able to monitor and track their influence in healthcare policies, or whether it's looking at either access pathways to certain innovations or indeed endpoints that are being measured to capture what is most relevant to patients. These are the kind of things that I think really make a difference from a patient group's perspective about their value to the healthcare system. And I would also really emphasize that patient groups need to start building coalitions beyond their disease area. Because I've certainly seen in the last 10 years, if I look at the move from maybe what you might call a more personalized approach to healthcare delivery, whereby there was real emphasis on disease-specific approaches that were very much aligned with pre-existing categories of diseases, that a more population-based approach, alongside the need for these more specific approaches, is being viewed very favorably by an awful lot of healthcare systems. So patient groups need to be demonstrating how, by yes, collecting the evidence and the collective lived experience from their communities, how that actually translates across maybe traditional disease areas is probably an area that needs greater emphasis from patient groups. I've seen it in terms of the way that maybe policymakers and those who are tasked with making decisions on behalf of general populations, the way in which they very much appreciate both approaches. And if you're a patient group that can demonstrate that, that is very impactful, I think a national or a regional perspective. So that's the kind of specifics for patient groups. I think that maybe if I'm talking about the industry, definitely reward patient engagement internally, include the quality criteria that are there. The PFMD, the patient engagement management suite, has over 120 different metrics and indicators of how you can improve the quality of your engagement in both your projects that you're thinking about, but then also the review of your leadership. Because it's by elevating people who not only do this in a meaningful way, but elevating them within companies to decision-making levels is where we need patient engagement to be at, and that will help it flourish both from that operational and reputational perspective. I would definitely think that we can harmonize across companies in terms of the models that individual companies are using, and indeed, even within companies, across the affiliates of the those companies, particularly the multinational companies, that reducing the duplication that's there, but also the kind of one-off engagements that we've seen over the years that just don't lead to the kind of impact that patient groups would probably want to see. The two other as for industry would be around the decision points within companies of whether it's the portfolio of new drug or device candidates, the evidence planning that is being collected as part of either regulatory or HTA submissions, that involving patients in those decision points, it needs to probably move upstream rather than downstream of where it currently is. So earlier consideration of patient voices in the decision-making processes in companies. And then the last thing is, which was one of the first points I made about having independent facilitators and neutral spaces that instead of maybe the kind of the bilateral transactional approach to patient engagement, that you should support and fund these neutral spaces whereby multiple companies can come together and work on these common challenges. That's certainly something that will only help the patient community flourish as part of its ultimate sustainability.

Clarinda:

Wow. I I think Derick, that just that one answer to that one question was like a loaning course. Thank you so much. I think that was extremely rich. And this whole conversation has been incredibly insightful. We've really gained so much from it, and it's been such a wonderful conversation to start the year with. So thank you, Derick, once again for joining us. It's been wonderful having you.

Derick:

No problem at all. You're more than welcome.

Clarinda:

So, Caitlin, I think that was a really meaty conversation to start the year off on, and I'd love to hear your reflections on it.

Caitlin:

Yeah, so I think overall, what's really nice is that we started this year having an episode with Derick about multi-stakeholder collaboration because we know that's going to be a big theme moving forward. And I think probably what's abundantly clear to everyone listening anyway is that it really is going to be a huge driver, something that can move the needle. Because while we talk about patient involvement, it's not the same as just bringing a patient maybe into the room to get their opinions on something. It's really about making sure that there are patients in the room and they have equal value and weighting and insights as everyone else in the room as well. And there are several circumstances whereby you might need more than just two stakeholders, a patient and the other one. You might need lots of different stakeholders working together to make things happen. And I think we've given some really, really great examples today from Derick about how that can work. And clearly it's something that's incredibly valuable, but there are some key barriers to making that happen. For example, we discussed how everyone measures value in different ways. So, how can people collaborate in a way that demonstrates value in the way that they need it to and achieves what they want to achieve? Yeah. And the other barriers, of course, are just finding that room where you can get all those people in the same space.

Clarinda:

Yeah.

Caitlin:

Because quite often stakeholders are naturally siloed and they naturally speak to the same people over and over again. So how do we widen the net and make sure that it's not just all the same voices and that there's really diverse perspectives from lots of different stakeholders and within each stakeholder group as well, lots of different people. Yeah.

Clarinda:

I think, yeah, you're right about the barriers. And Derick also did give us some nice suggestions for overcoming those barriers. For example, having a neutral party, moderating those meetings, you know, setting expectations in terms of why are we here, what are we expecting to get out of this. Because when you throw people who don't normally work together in the same room and just expect them to see eye to eye suddenly, that's not likely to happen if they're not very clear on what they're working towards. And, you know, defining what success looks like, what we're expecting to achieve. I think some of those things are really important. And I think incentivizing collaboration as well was another one that he spoke about, or the need for rewarding it, because it's true that why would people go out of their comfort zone, which is to work with people they're used to working with and work outside that with other people, you know, in completely different domains across fields, perhaps with different levels of specialization, if there is no real incentive for them to do that. So I think those were some great ideas there.

Caitlin:

I totally agree. And you know, this podcast is actually all about collaboration. We're talking about patient involvement, but what we mean is patients be involved in the same room as other stakeholders. So really excited to see the collaborative projects that happen in 2027. Yeah, and lots more of those.

Clarinda:

Thank you for joining us today. You've been listening to Not Just Patients with our guest Derick Mitchell and your hosts, Caitlin Rich and Clarinda Cerejo.

Head Shot

Caitlin Rich

Co-host
Head Shot

Clarinda Cerejo

Co-host