Transforming Health Systems Through Social Participation | Dheepa Rajan

Join us for a compelling conversation with Dr. Dheepa Rajan, who serves as a Health Systems Advisor at the European Observatory on Health Systems and Policies, as we explore what social participation means and how it can transform health policy and health system performance.

Prior to joining the European Observatory, Deepa spent over 15 years at the World Health Organization (WHO) headquarters in various health system roles, covering national health planning, health system performance, participatory governance, and primary health care. She has led landmark publications including the WHO Handbook on Social Participation, the Primary Healthcare Primer, and Health System Performance Assessment: A Framework for Policy Analysis. Trained as a medical doctor, followed by acquiring advanced degrees in health economics and policy in Europe and a doctorate on traditional medicine in India, she brings a uniquely global, grounded, and systems-focused lens to the conversation.

In this episode, we unpack the WHO resolution on social participation, its goals and objectives, and what it means for governments in practice. While acknowledging barriers and challenges to achieving social participation in practice, Dheepa also shares inspiring real-world examples of the value social participation can have and how it can effectively influence health policy.

Note: Dheepa's reflections here draw on her time at WHO headquarters and her current work at the European Observatory. They represent her personal views and experiences and are not an official WHO or Observatory view, position, or decision.

Resources and Abbreviations

• WHO Resolution on Social Participation
• WHO Handbook on Social Participation
• DG - Director General
• ADG - Assistant Director General
• WHO DG Dialogues

Chapters

• 00:00:00 - Introductions and episode overview
• 00:01:47 - Defining social participation
• 00:03:19 - Social participation vs. patient engagement
• 00:08:04 - Understanding the WHO Resolution on Social Participation
• 00:15:34 - How WHO works with member states
• 00:17:21 - Defining 'civil society' and types of civil society organisations
• 00:20:46 - Dheepa's journey into health system governance and social participation
• 00:25:37 - Benefits of social participation
• 00:28:58 - Case study of successful social participation in practice
• 00:33:05 - Barriers to social participation
• 00:42:58 - Dheepa's long-term dream for social participation
• 00:45:01 - Advice for stakeholders to engage with civil society better
• 00:46:16 - Advice for patient advocates and citizens to get involved in health policy
• 00:49:26 - Reflections with Caitlin and Clarinda

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Transcript

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Introductions and episode overview

Dheepa 0:00

The second concrete thing is to really facilitate capacity strengthening. On the one hand for civil society, but also for policymakers, because policymakers struggle to kind of do participation. So unless policymakers understand it, know how to do it, it's not going to happen the way it should.

Caitlin 0:17

Hi, I'm Caitlin.

Clarinda 0:19

And I'm Clarinda. And this is Not Just Patients, a podcast where we break values to meaningful patient involvement in healthcare.

Caitlin 0:27

Thank you so much for joining us today. Our guest on this episode is Dr. Deepa Rajan, who will be talking to us about social participation in health policy.

Clarinda 0:36

Deepa joined the European Observatory on Health Systems and Policies in July 2022, before which she spent over 15 years at WHO headquarters in various health system roles, covering national health planning, health system performance, participatory governance, and primary health care. She led various key WHO and European observatory publications on topics such as the WHO Handbook on Social Participation, the Primary Healthcare Primal, and Health System Performance Assessment, a framework for policy analysis. She did an MD at the University of Gottingen in Germany, followed by a master's degree in health economics and policy from the UK and completed her doctorate on traditional medicine in India. Deepa's reflections today draw on her time at WHO headquarters and her current work at the European Observatory. They represent her personal views and experiences and are not an official WHO or observatory view, position, or decision. Deepa, it's wonderful to have you here. I'm really excited about this conversation. Thank you for joining us. Thank you for having me. So we're

Defining social participation

Clarinda 1:47

going to be talking today about social participation in health policy. And maybe we can set the scene by defining the term social participation in healthcare. Sure.

Speaker 1:58

Yeah. So when we use this term social participation, the definition that we have in the WHO handbook on social participation is it's supposed to be a more umbrella term within which you have different types of participation in the health sector. So that means that you know it's encompasses participation with the general public, participation with patients, participation with civil society organizations, and so across the board. So with people, with communities, and civil society, sort of the three big groups that are relevant in the health sector. For the handbook on social participation, we really tried to look at various pieces of literature and also policy documents to see what terms are people actually using. And of course, at a global level, it's really difficult to find one common term because in different regions, different terminology, you know, is used. And so the term social participation, for example, in Latin America is automatically understood, you know, in other places less so. Here in the European region, people tend to use the term citizen engagement or public participation. But really, what we mean by this term is, you know, an overarching term within which we want to talk about engagement between government and communities, government and people in general, and government and civil society.

Clarinda 3:18

Yeah, so

Social participation vs. patient engagement

Clarinda 3:19

this podcast is about patient engagement in healthcare and patient involvement. And we talk a lot about patient engagement. So those are familiar terms for our listeners. But social participation is a new one. And maybe we could talk about how that overlaps. You did mention patients as one of the groups that government would potentially engage with, but how would this overlap with or differ from patient engagement? Who would be the people actually doing the engaging and who would be the engagees if that if I might use that term?

Speaker 3:54

Yeah. Yeah, no, great question. So obviously, in the health space, patients are one of the key populations with whom one needs to engage. And so, because in the WHO handbook and the WHO resolution, the focus is on governance of the health sector. When we talk about who is engaging, we're largely looking at this the perspective of the government. We're not saying that the government is the only stakeholder doing the governing. Ideally, the governance has to be shared between government and many other stakeholders, most importantly with patients and with people. In practice, we know that it's basically government at least leading on this. And because WHO is a member state organization working with member state governments, we're looking at it from this government perspective. So we're saying that governments, because they have the responsibility and the accountability for health system performance and for the health system overall, that they need to engage with the beneficiaries of the health system, which is ultimately people. And within that group of, let's say, people, the population, the biggest sort of subgroup within that are obviously patients. So you can see social participation as an umbrella term within which patients are a key stakeholder or subpopulation with whom governments need to engage. And in practice, what that means is that either they engage with patient associations, so in an organized form, but also with individual patients. If governments want to just hear about lived experience of a particular situation or condition, sometimes, you know, just that experience needs to be heard, and that can go via a patient association, but it can also be directly with patients.

Caitlin 5:36

Yeah, interesting. I think something that I've been thinking about as you've been speaking is I guess an interesting nuance between how we define a patient. Like I guess usually you define a patient as someone who's living with a certain health condition. Whereas when you broaden it to people, health matters to everyone. So actually, we're talking about people who could be a patient or who may be a patient in the future, or even, you know, some people aren't necessarily patients with a condition, but there are sort of broader implications anyway on public health, like groups of people who might need vaccines against certain diseases or prevention, or how do we talk about diet and exercise and pollution and general bits of health, which may not specifically have what we're talking about, like a patient population, but still matter to the general public. In my brain, that kind of helps distinguish, I guess, what we're talking about in terms of social participation, which I guess is everyone, and how health impacts them, versus yeah, that subset of people who are living with a certain condition.

Speaker 6:44

Yeah, absolutely. So when we talk about social participation, as you just said, it's about everyone. But ultimately, everyone is affected by health, whether they know it or not. Sometimes it's innately they're carrying a risk factor and they don't know it, but somebody needs to engage with them to proactively let them know so that they can engage in preventive activities to prevent ill health. It could also just mean because one is a caregiver of somebody who is in ill health, but they're all affected by the health system and by health in general. So that's everyone. Or it might mean, you know, we all go in and out of becoming patients. So we may not be a patient now, but then, you know, in a few years' time, we might spend a year being a patient for whatever reason. Social participation is about engaging with everyone because we also need, from the government perspective, we need the views of even those who are not right now engaging with the health system to improve the health system. But we also especially need the patient perspective because those are the people who are actually confronted with all the barriers of accessing the health system and the and the problems within the health system which need to be raised and which the health policy needs to address. So it's an important, obviously, core group that one needs to engage with, but we shouldn't see it as an exclusive group. Yeah, that makes a lot of sense.

Clarinda 8:01

Thanks, Deepa, for setting the scene really nicely.

Understanding the WHO Resolution on Social Participation

Clarinda 8:04

We'd love to talk about the resolution itself now and understand a little bit about how that came about. I understand that in general these WHO, WHA World Health Assembly resolutions are years, decades sometimes in the making. So maybe you can talk a little bit about what went on behind the scenes to drive this, the work that went into it. What was the initial impetus for this movement as it was?

Speaker 8:33

Yeah, somewhere around maybe 2017-ish, 18-ish, anyway, a few years before the COVID crisis, there was a lot of engagement at the time with the Director General of WHO and also the Assistant Director General for Health Systems with civil society organizations. Because that was when discussion started for the WHO Civil Society Commission to be set up, whose mandate is slightly different because that's about civil society's engagement with WHO as an entity. Under social participation, we're talking about member state governments engaging with people in their countries. It's slightly different, although there are some overlaps. So there was a lot of engagement and also advocacy, you know, being done by civil society organizations and lots of interaction at that level. And one of the things that came out was that WHO should be doing more to provide guidance to member state governments to engage more effectively with people and communities and civil society for health policymaking. So in their respective countries, because the core WHO mandate is to support member states in their health policies. One of the key aspects of policy making is the process of policy making. And there was, you know, an agreement across the board that it just was not participatory enough in the vast majority of countries. And that WHO can step in with its guidance and evidence analyses, etc. And so at the time I was working in the health system division, and what I was working on was more the support to national health strategies and plans of member states. So we would be working with member states for you know several months when they wanted to do either a midterm review of their national health strategy or plan or to prepare a new strategy. And part of our work was to encourage member states to be more participatory in their processes. And we were providing guidance on that already, but it was embedded into the work on national health planning. So the ADG at the time said, okay, let's see if we can take that out and put more emphasis on that, that participatory piece, do some evidence reviews, think about a WHO guidance document on how to more effectively engage with people for member states. So that's how, you know, this sort of landed on my desk at the time. And then we put together the usual WHO approach, an expert advisory group. We, of course, as WHO, we have the huge privilege and honor to really reach out to sort of the best experts in these areas. We got member state representatives, civil society representatives. So we put together an advisory group. We did a number of evidence reviews, literature reviews, and then we also did some primary data collection in, I think it was nine countries at the time, spread out over the different regions, where we actually went to countries and did qualitative studies. And so all of this culminated into the WHO handbook on social participation, which came out around the time of the pandemic. And it involved many consultations, not only with member states, but of course with civil society organizations. We had this very close engagement and in the lead-up to this guidance document. And then the director general was also at the time doing specific DG dialogues with civil society. I don't know if you remember that. He had a like a series of DG dialogues, and civil society organizations chose the topics that were discussed in these DG dialogues. So once the handbook was out, civil society organization actually proposed the topic of, well, how do we implement this? Or what are the priorities for implementing the guidance that is in this document? And that's where the idea of the resolution came out in one of these DG dialogues with civil society. And it was, you know, member states were also in this dialogue. And so the idea was to then work with member states to see if this is something that they would want to put forward as a resolution, because resolutions are always originating with member states in the World Health Assembly. To make a very long story short, there were several countries that were very keen on putting this forward as a resolution. And we gave ourselves at the time like a three to four year timeline, because of course there's a huge process around putting together a resolution. You need to do the consultations in every WHO region, listen to the different member states and their concerns and their priorities within this topical area so that it can be integrated into the resolution text. And of course, because of this topic, we also wanted to closely involve civil society and have various consultations with them as well to ensure that we had a text in the resolution that represented the needs of everyone involved. And then ultimately, I moved in 2022. So my colleagues then took over the last stretch of the resolution negotiations with member states. But I, you know, I was in close contact with my colleagues. The actual resolution negotiations ended up being much more difficult than we expected because when it comes to the principle of participation, almost all countries are okay with it. It's more about the jump from the principle to action, is where we dropped the ball. Important to say, but it still was finally adopted unanimously after all those difficulties, which meant that ultimately member states do realize that you know they can't have a health system for people without involving people into the policymaking.

Clarinda 13:46

And what were the goals and what did the signatories aim to achieve when this resolution was put into place?

Speaker 13:55

So this resolution basically focuses on institutionalizing participation as a health sector, modus operandi, ultimately. So it calls on countries to adequately finance participation, which can mean a lot of things. It doesn't mean direct financing by governments necessarily, but there are lots of things a country can do to ensure that there are resources necessary to make participation happen. The second concrete thing is to really facilitate capacity strengthening. On the one hand, for civil society, but also for policymakers, because policymakers struggle to kind of do participation. So unless policymakers understand it, know how to do it, it's not going to happen the way it should. And then, you know, a final point is the monitoring and evaluation of participation. And so one of the things we'd like to move towards is more regular monitoring and collection of data in countries on what is happening with participation, which basically is getting at making it something that's regular and systematic and not sort of these one-off consultations or one-off initiatives, which there are a lot of, and they're great that they're happening, but they become pockets of good practice without being something systematic and regular. Thanks, Deepa.

Caitlin 15:07

That's all so interesting and really great to hear about how that came about over so long. And of course, particularly at that global level, it can take a lot of time to implement things, especially I'm sure the pandemic kind of slowed progress to this kind of work because a lot of the healthcare systems were distracted at the time. And yeah, it's just really interesting to hear how it evolved and how many stakeholders were involved. And I actually wondered

How WHO works with member states

Caitlin 15:34

if we could explain some of those stakeholders that we spoke about. So I think you mentioned member states a few times, which, if I understand correctly, those are the countries essentially that are part of the WHO and they sort of take on the resolutions and the guidance from the WHO.

Speaker 15:53

Yes, member states are countries that are willing to be members of the WHO. Ultimately, WHO is a member state organization, which is why the member states, all of them get together every year in May for the World Health Assembly to determine the strategic direction of WHO. So when we say member states, it means ultimately it's their governments who are paying their member state dues to WHO, and it's the governments that are requesting WHO to have a certain work plan. And so, for example, social participation was in the work plan. And since the assembly signed off on this resolution, we then report every two years back to member states how it is being implemented. Ultimately, the implementation happens, however, in countries, right? In within the member states. So they're the ones who need to then collect the data, report to the secretariat of WHO. So the fact that we have a handbook on social participation, that we have this resolution, it does mean that there's a level of importance that countries are according to this area of work. And I think especially in today's world where we have a lot of budget crunches, less money for health, I think there's also a recognition that working together with people for the health system to work well, to be responsive to their needs is also a question of efficiency of the health system.

Caitlin 17:14

Yeah, that's really interesting. Thanks for that background on how the WHO functions. And then just quickly,

Defining 'civil society' and types of civil society organisations

Caitlin 17:21

the other organization you mentioned was civil society organization. So how does that differ, I guess, from the kind of member state governance?

Speaker 17:29

Yeah, so when we talk about civil society, we're talking about anyone who's non-government or non-sort of private sector, you know, or the for-profit sector, right? So we're looking at basically everyone else. But civil society is all of us. And then if we say civil society organization, then we're talking about people that are organized, and usually they're organized around an idea, around an identity, around an expertise area, like women's health organization. There can be men in the organization, but it's expertise in that area. And within the social participation paradigm, when government engages with civil society, we talk about government engaging with sort of three big groups. And these are the ones that are relevant for health mainly. So they can engage directly with people. So through public engagement initiatives, you know, recently in France, what they have ongoing at the moment is like a large-scale public consultation on bioethical matters, for example. And a couple of years ago, they had a large-scale public consultation on the topic of end-of-life and end-of-life care. And this was just open to anyone, you know. So this is, you know, engagement with the public. Then we have an engagement with communities. And this community engagement is a big issue in the health sector because traditionally in public health, we target certain communities with our health activities, like people living with HIV AIDS or children or mothers, because of you know specific health-related issues within those communities. So community engagement is a really important term within health. And it's something that the health sector has always been doing. And the communities also can be defined around an identity, around a geography as well. You know, it could be a community living in a certain neighborhood and in other ways as well. So that's the community engagement angle. And in health, what we also do is then engagement with you know civil society organizations. And this is usually when governments have more structured approaches to engagements or consultations, because it's, you know, from a government perspective or from the perspective of the person who is engaging, it's hard to know who we should talk to. And so it's a lot easier if people are organized and there's somebody who you know represents that community or idea or whatever it is. That's another sort of third major modality of engagement. And what we say ultimately in the social participation handbook is that ultimately you need to be doing all three because you're always going to miss somebody or something, some issue if you only focus on one. So you have to be analyzing always at any given point who's not in the room, who should be there. I mean, that's sort of a bottom line, very basic principle that we try to really get out there when we work with governments and advise them on social participation.

Clarinda 20:06

Yeah. Thank you, Deepal. That was really, really clear and a very nice overview, I think, because I think overall policy making is such an obscure thing for the average person to understand or even think about. And it affects everyone, but no one understands it. No one really knows how it works. And we are also in the process of working on launching a series on underserved communities in healthcare, and this kind of paints the picture of everyone healthcare touches in so many different ways. So I think that's really helpful. But we've gotten ahead of ourselves, and I would like to talk

Dheepa's journey into health system governance and social participation

Clarinda 20:46

about your own story and what brought you into this space.

Speaker 20:50

Well, I mean, my background is in medicine, and then I also worked clinically for a couple of years, but then I was in South Africa for some time, and then in India as well, where I started getting more and more into public health work and just seeing that you know clinical medicine is great, but there's so many things that you can't address just through the clinical part. That there's, you know, in South Africa at the time with HIV being the main issue, outreach was really, really key. Outreach and health literacy and health promotion and things like that. And then in India, I was working on, for example, malnutrition at the clinical stage. You're really at the very end of the patient's journey. You need to work with them before they come into needing clinical care. Yes. And so I started fairly early at WHO, you know, in 2006. And at the beginning, I was doing clinical practice guidelines for maternal and child health, and especially looking at trying to cost those guidelines in the different countries. And the one thing that was clear to me, being at that time more in the maternal and child health space, was that the barriers that a patient may face in that journey, in that patient pathway, were very systemic. And so I started working much more in the health. System space, just seeing that as something that needed to be addressed. And I spent, you know, over a decade then in the health system division doing different aspects of health systems. And my sort of last station at WHO headquarters was in governance. And in parallel to working on the social participation handbook and the resolution, I was also working on a new WHO framework on health systems performance. And so we were looking at defining the health system really. And we always say there are four main functions of the health systems. The most obvious one is health service delivery. So it has to deliver services. You need a health financing function because somebody needs to pay for those services. Ideally, we advocate for more public funding as far as possible, but a lot of it can be private or even out of pocket by households. Then we have what we call the function of resource generation. The health system has to churn out health workers, it has to somehow procure medicines and build or maintain infrastructure. So that's the resource generation function. But the fourth key function is governance. Like somehow all of that needs to be brought together. Somebody has to oversee it, monitor it, steer it in the direction of our health system goals. And what are our health system goals? Ultimately, it's to improve the health of the people. But also we want to make sure that while we're improving the health of people, that they are able to access care properly. So we have the goal of improving access to care. We want to have high-quality care. So we have quality as a big health system goal. And, you know, so on and so forth. And what we realized, having worked in kind of in all of these functions, if you will, from the WHO perspective, the function that is most understudied, where there's very less focus to, also on the part of governance, is governance. Whenever we put money into the health system, when we have health policies, it's often about the services themselves. So it's service delivery that gets a big focus and a lot of money. Resources, especially the health workforce, gets a lot of focus. And of course, financing is always an issue because without the money, you can't do anything. But we haven't done enough to really improve governance of the system. And this is where for me it was really important to start understanding that better and work more in that space. And one of the key aspects of governance, besides, you know, regulation and legislation, was the piece of who's governing and how are we involving the different stakeholders of the health sector into the governance of the system. And this is where a lot of the problems further down the line, you know, you can trace it back to the fact that it was a top-down policy that didn't take into consideration the realities of the people or the patient, and that the governance aspect was done in a way that just wasn't participatory enough. And this is what got me into the social participation space where I thought, okay, let's look at how can we do that better? And how can we advise member states in a way, you know, to do it better. And it's really tough because as we know, ultimately it's also a power balance issue. It's about governments being willing to share power with others in their decision-making role, in their policy-making mandate. It's about understanding that you may not have all of the answers on the part of a government because you're not living the reality that people are. And it's about admitting that. So it's a tough one in many ways. So it's such a nice idea. Everyone agrees to it, but in practice, we all know that it's very difficult to actually do.

Caitlin 25:12

Yeah. Yeah, really interesting. Thank you. And you've spoken a bit there about the kind of barriers or the reasons that people, I guess, weren't necessarily involved in that kind of policy making earlier on. And, you know, really exciting to see that actually that's something that's changing with this resolution in the work that you're doing. And I wondered if we could touch on, therefore, it seems that it might be pretty obvious,

Benefits of social participation

Caitlin 25:37

but why should civil society be involved in policy making? What are the actual benefits of it for the system?

Speaker 25:47

Yeah, I mean, the short answer is that if we want good performance of the health system, we need to involve the beneficiaries of the health system right from the beginning in the way health policies are designed because they're the ones using it and they're the ones whose needs we're trying to address with health policies. And when I say improve health system performance, what does that mean? The existence of the health system is there to what? To improve the health of the population. So that's one key health system goal. Other typical goals of the health system are health equity. So we want to make sure that different subgroups in society have the same health outcomes. We don't want some groups to have worse health outcomes than others. Another typical health system goal is access, good access to care, quality of care, efficiency of the health system is usually a very strong policymaker concern, which means that we need to maintain good health system performance at a level of resource and costs that we can afford them. I'd like to clarify that efficiency does not mean cost containment necessarily. It's the input-output relationship. It's if we try to maintain a certain level of health system performance with a stable level of input. Or if we need to reduce the health budget, we try to do so by maintaining the output of the system. So the improvement of the population and access and quality. So it's that interaction, which is efficiency. You know, if we reduce costs, but then we drastically reduce the performance of the system, that's not being very efficient. Yeah. In any case, those are all typical health system goals. So when we say we have good health system performance, it means that we are meeting our goals or we are on a good pathway to meeting our goals. And in order to achieve those goals, we need the four functions of the system to be very high performing. And the one that is usually ignored is the governance function because it's messy, it's difficult to have policy interventions on the governance side of things. Things like doing more participation, capacity building for our policymakers to know how to do that, improving soft skills of policymakers to deal with conflicts of interest sometimes. These are all more difficult things to do. And I think this is something where we need to put in much more attention. There are different aspects to governance, but one of the big subfunctions, as we say, of governance is participation. And this is the one that is often not done well enough, ignored, or, you know, seen as the least important. And I think we need to boost it. And I hope that the social participation resolution has done that.

Caitlin 28:15

Yeah, that makes a lot of sense. Thank you. And you know, I know that patient involvement we've talked about as sort of a subsection of social participation. But of course, we always say that, you know, why would you ever do anything without considering the people at impacts? And of course, general health policy and social participation is exactly that on an even broader level. So yeah, it makes sure that the people in the policymaking or government capacity really understand how people experience the healthcare system, what they need, what needs to be prioritized. And that means that the policies that are put in place do actually support people in the real world and meet their needs, which is fantastic.

Case study of successful social participation in practice

Caitlin 28:58

Are there any real-world examples you could share where this community advocacy or lived experience has successfully shaped a healthcare policy in a way that it wouldn't have if there wasn't social participation?

Speaker 29:11

Yeah, so there are lots of great examples. I'd like to highlight Thailand as one of the bright stars in social participation because they have something every year in December called the National Health Assembly. And in that, they bring together a wide variety of stakeholders. They call their stakeholder base, they call it the triangle that moves the mountains. So three vertices of the triangle being the three big stakeholder groups, one being the policymakers slash government, the other is people, communities, and civil society. And the third is knowledge generators, so basically academics, the evidence generators. And they say that these three always need to come together for any health policy. And they bring these three groups together every year. They've been doing this for more than two decades. So you can imagine that over the years, they've fine-tuned the modalities. Behind this, there's an institution called the National Health Commission Office, where the staff prepare for a whole year. I mean, they do other things as well, but they have staff that prepare for the whole year, the National Health Assembly. And what does that mean? It means that there's a whole process of National Health Assembly resolution topic proposals that anyone can propose. However, any proposal has to involve input from these three groups, from the triangle groups. And then once there's a short list of proposal topics, there are working groups that work with the academics around those topics to be able to bring it to the resolution. Sometimes they're not finished by the end of the year and then it gets tabled for the next year because I need more time. So when the resolutions discussed in December, you know, these are big events with several hundreds of people who come and then discuss those resolutions. And then once a resolution is passed, then there's a resolution follow-up committee to make sure that it does get some follow-up. The commission itself, the National Health Commission, enjoys high-level patronage. So the commission itself has members from the highest levels of government. And this also ensures a better policy link. And all of this is supported by regional level assemblies or what they call provincial level assemblies. So there's a bottom-up sort of process to bring topics from bottom to up and a general social participation approach in the health sector, which also involves at local level lots of civil society engagement, public hearings on health-related topics, et cetera, et cetera. So it's a process that has been fine-tuned and developed over a very long time, from which we can all learn. And it hasn't always been easy. The kinds of topics that go through sometimes be difficult and contentious as well, like tobacco control or one health, you know, et cetera. So sometimes the more difficult topics might need more than one year to prepare because there's tensions between stakeholders. And, you know, many years ago, I had the privilege of conducting a sort of 10-year retrospective evaluation of the National Health Assembly process. And I was in Thailand and I interviewed many stakeholders, including industry, private sector representatives. And in the end, you know, even they were very positive about the assembly because they felt that some of these contentious topics that are otherwise very difficult to find a forum to discuss, at least this was one of the forums where they could discuss and where also people were there, people and community. So you had a sense of what that perspective was as well, which is ultimately the target audience also for industry. Yeah, so this is of course one of the great best practice examples that we always like to cite.

Clarinda 32:36

Yeah, so thanks for sharing that. I think that's quite an inspiring example, and it also kind of shows that it's not necessarily, you know, a big powerhouse country that needs to be setting the precedent always for how things should be. It can start up in some really small country sometimes that's showing the way in really new innovative ways, and that's quite refreshing also to hear stories like that. I think we can move on and talk a

Barriers to social participation

Clarinda 33:05

little bit about the barriers, which is always a little difficult to talk about. But you mentioned that the gap between the adoption of the principle, which is easier, and then the implementation, that's huge. So, what are some of the barriers? You did touch upon a couple, and I think some are obvious. So, for example, policymakers needing training, civil society needing training, the mindset or the willingness maybe for policymakers to share that power and bring people into that space where you know they've traditionally held that power and been able to wield it in whatever manner they would like to. So being collaborative suddenly is like a huge mind shift. I think those might be some of the obvious ones that come to mind and some that you've mentioned as well. But what are some of the others? And then I'd also like to tie that to the progress that has been made since the resolution was signed, perhaps, and how some of those barriers might tie to that.

Speaker 34:13

Yes, absolutely. So, in terms of barriers, I really feel that participatory processes in countries often have, I mean, either you have the more government-initiated, so-called top-down processes, you know, where there's systems that are put in place. Ireland is really trying to put that in place with their patient partnership initiative at the national, regional, and local levels. And then when that's kind of the way it starts, the barriers that they're facing is fairly typical, is that at some point they've got the structures in place and the goodwill is there, even the funding is there, the window of political opportunity is there, but then civil society may not be ready, or certain civil society organizations might be ready, but others not. And so now the challenges that they're facing are who do we engage with, or how can we avoid engaging with the same people all the time, you know, and how can we diversify? And recently I was having a conversation with Flanders here in Belgium about their primary care boards, and they're facing exactly the same thing. They're struggling, trying to get the right people into the primary care boards and those that they feel are really giving the kind of input they need or representative enough, or trying to avoid sort of the same usual suspect, high-capacitated civil society representatives, which we need them as well, but to go beyond that. And there, the barrier then to moving, advancing further is capacities of civil society and of people. And this is where, again, I come back to Thailand and their approach is that in parallel to the preparatory process over the course of a year for the National Health Assembly, they invest heavily in capacity building. Capacity building not only of civil society organizations and people, but also of their own policymakers. And go out to policymakers, explain to them about the National Health Assembly and its form, sensitize them to this opportunity, and build capacity to use it. And then another barrier also linked to this, is as you've already mentioned, Clorinda, is the capacities of policymakers. Even if they have goodwill and they want to do it well, they struggle. And what we mean by that really is capacity to hear what people are saying and what civil society are saying, and actually translate that into something that is relevant for policymaking or to be able to link that into their own policymaking work because the information is going to come not in the format that they need it. So, how to make those links? Really, that's exactly where WHO has a very key role to play to work with policymakers and build their capacity in doing that. Because some of them struggle and are just lost in that. You know, they hear it. But then the question is, how do I bring it into my policymaking process? How do I convince others with whom I work in my ministry or who may be skeptical of this information coming in from this source? That's on the one hand. And on the other hand, one thing that is really important, and this is the whole regularity piece of the social participation resolution, is the more exposure all sides have with each other, the more everyone collectively learns to make it better and to make it work. And working with each other, civil society learns how to engage with policymakers, policymakers learn how to work with civil society. It may not be perfect or very fruitful the first few times or first few years, even to keep those fora and possibilities open to practice with each other, so to speak. That's one thing. The second issue that I wanted to say about policymakers, where we need to strengthen capacities, is when we bring in civil society organization, you know, often it's not just civil society organization, we also bring in other stakeholders, health professionals, industry, all of them together. That can be difficult. And there's issues of conflicts of interest. And dealing with that is often something that policymakers do struggle with, and they tend to then avoid it. Right. You know, and this is also, I would say, one of the barriers to advancing in this area of social participation. You know, and often it may also mean that there's, for example, an underlying mistrust of a patient organization because everyone knows it's funded by X pharmaceutical company. Now, if that's not openly discussed and addressed, that mistrust is going to be there throughout the whole process and it's going to affect what comes out. And so we need to openly say, okay, let's put that out in the open and say, okay, this is the objective of our consultation or whatever. These are the different potential conflicts of interest. How are we going to collectively address that and find a solution for it together? And these are all things that block having more participation as a real modus operandi of the health sector. All of these issues that are sort of elephants in the room, we need to learn how to address. And that's it's tough. It's not an easy one. Right.

Clarinda 38:36

I think that my experience of some of these social participation efforts, you know, have been when there have been these multi-stakeholder consultations with governments. Like I've participated in some for rare diseases with the Health Ministry of India. And then it's called a multi-stakeholder forum or it's called a patient engagement forum, but there is no patient representation per se. Like there might be patients in the room, but it feels tokenistic. It feels very much like okay, this is something that is new to us and it's something that we're asked to do, and now we'll try to do it. But it doesn't feel like a comfortable engagement where all stakeholders are an equal level, perhaps. You know, it feels very much like a group of healthcare decision makers, policy makers at the table in discussion. And the odd maybe one patient advocate or something, but it feels tokenistic still. And I think, yeah, there is a long way to go in that sense.

Speaker 39:41

This is unfortunately fairly typical, the story that you're saying, and it's what a lot of people feel. Yeah, it tends to be tokenistic. It's something that policymakers are doing because they've been told to do it or they have to do it, but nobody has trained them adequately to do it. They are struggling themselves, even the ones that mean well that this is kind of plonked onto them, and then they don't really know how to do it. They have to figure out the lay of the land, who to even invite. And also often it's too late in the game in terms of the policy in question to actually have an influence on it. And so they, the ones that at least have goodwill, they're of course also struggling. Others may just be doing it as a real tick-the-box exercise. And it's a real pity because it's a lost opportunity, you know. And if that goes on too long, as you all know, patient organizations, civil society organizations, I mean, many of you are volunteers, you're giving your time, there's opportunity costs, there's other actual costs in participating. You know, you'll only do this so many times, and at some point you'll say, okay, this is really not worth it. And so there's that risk of completely losing that connection altogether. And it's such a lost opportunity. And on the other hand, I do feel, having seen and been a part of a lot of these kinds of consultations and having spoken up with lots of policymakers about it, is that you need more exposure to each other and more opportunity to talk and discuss because the more frequently you engage with each other, the more you build a relationship. Because ultimately these kinds of things, it's about relationships and building those. You know, even in difficult situations where the initial consultations are very confrontative and it's about civil society really just airing their views and complaints because it's their first opportunity to do so, and policymakers being super defensive. Over time, you you learn to understand the other side's perspective, whether you agree or not. And over time, if you keep at it in a structured and genuine way, you can get to a point where this can be fruitful. But somehow often we're not patient enough to get there. And yeah, it's a lost opportunity. And we hope that with the resolution and the WHO support behind it, that we can encourage more countries to not give up and just invest in a non-tokenistic way.

Caitlin 41:47

Yeah, thanks so much, Deeper. And as you were speaking, I was kind of reflecting on at the end of last year. We did a bit of an episode to say what do we think the key theme for 2026 was going to be. And multi-stakeholder collaboration came up on sort of the top. And I think you've touched on a lot of those themes today, and you know, trying to overcome, I guess, the different ways that people communicate, the different values, the different objectives and what they're trying to achieve to sort of come together and find that common goal and understand each other and work together, which I think is very much what you've been talking about, and I guess what you're trying to achieve as well with the social participation resolution. So it's all sort of really wrapped up really nicely into that theme. And for me in particular, who's not really worked a lot in healthcare policy before, this has been such an enlightening, really clear and interesting, insightful conversation. So thank you so much. I think what's really clear from what you said is that we're making steps in the right direction. There are several things that are going on at a global level, but also markets are kind of taking that on and implementing it. But it also feels clear that there's a little bit of a way to go. So I wondered if looking into the future,

Dheepa's long-term dream for social participation

Caitlin 42:58

you could tell us a little bit about what that long-term dream or goal is for social participation.

Speaker 43:03

Oh, definitely it's to have participation be an uncontested and embedded aspect of the way the health system works. So, what that means is anything that we do in the health system has an aspect of having partnered with citizens, having consulted with people, having civil society part of the implementation, perhaps, of certain health policies, you know, having participation embedded in every step of the health policy process and really part of the modus operandi of the health system. And especially on the governance side of things, I would definitely see something what the National Health Assembly represents in Thailand, really the direction that we need to go. It may look different in different countries. I mean, the National Health Assembly, it's a very Thai approach, but I think there's so many key elements of that that we can draw from and implement in other. Countries as well. And if we can go that direction. And we are very slowly going in that direction, but it's so slow, unfortunately. That's just the future of the beast. At least if the overarching direction is still forwards, you know, it might mean two steps back before we do three steps forward. Then, you know, we need to keep at it. This is also an area where we need to be in it for the long haul. We're not going to see improvements or advances right away. It takes time. It takes time to build relationships. It takes time for different sides to see the point of it, to see how it really can help their work and for it to really bear fruit. And so sometimes we need to keep that in mind, be patient. And that's not always easy in a context of reduced funding, budgets, resources. People don't have time. But I truly believe that this is the only direction that we need to go if we want to improve our health system. Thank you, Deepa.

Clarinda 44:47

That was really beautifully articulated. And I think that it is a positive, optimistic dream that we can all aspire to. And I think that wrapped up in your dream might also have been your answer to this next question.

Advice for stakeholders to engage with civil society better

Clarinda 45:01

But what would be your advice for policymakers to think more about community needs and lived experience when creating policies?

Speaker 45:11

I think I would say it's hugely enriching. And it's not as daunting as it seems. It might seem very daunting at the beginning to start embedding more participation in the policy process. And many policymakers I talk with, they see the risks first before anything else. But all of that can be mitigated. It's about doing it right and knowing how to do it. And this is the issue. And WHO can be a strong support there. And ultimately, it can not only enrich the policy process, but the outcomes are much more implementable. Policies then are much more likely to be implemented and to be implemented to the satisfaction of stakeholders. And so it reduces so many problems down the line in a way. And ultimately, it improves health system performance. And there's a growing evidence base for that. So that's also something we can draw on more strongly to make arguments, you know, within ministries of health, with other health sector stakeholders, also possibly with Ministry of Finance. These are things that we can draw on more strongly. And I think we don't leverage them enough.

Caitlin 46:12

Yeah. Fantastic. Thank you. And then for anyone who's listening

Advice for patient advocates and citizens to get involved in health policy

Caitlin 46:16

from more the patient advocacy side or even civil society side, what advice would you give to them to try and get more involved in shaping healthcare policy?

Speaker 46:26

Yeah. I think it's hugely important that we have patient voice, obviously. We've been talking about it for the last hour in policy. And so patients, it's important to be a part of organized civil society if there is one in terms of a patient association. If there is one, work with your civil society organization, see if you can give your time or expertise or whatever with your organized patient association. And when it comes to advocacies, to you know, see where the entry points are with policymakers, some of these consultations that you talked about, uh Clarinda, or opportunities and spaces to be engaged. And then the preparation to that is really key. And what I'm often tell patient associations and patient organizations is that you have much more strength in numbers. And you know, the patient community is huge. I mean, it's basically almost everyone in in society, you know, more or less. And you have a much stronger voice if you can organize yourself together. So often patient associations are organized around specific diseases or disease groups. And you know, there's a good reason for that. But when it comes to the advocacy vis-a-vis policymakers, you have a much stronger voice and a much stronger ability to influence if you get together, coordinate with each other, come to a common understanding in terms of your messages. I know it's hugely difficult, right? There's lots of barriers to that. And you know, I've witnessed those myself in different situations. I know it's hugely difficult, but it gives you a strong voice, strong influence, huge levels of legitimacy. If you've managed to coordinate with each other and come with a common voice, policymaker will have difficulty ignoring that because that goes into the political level as well. And so advice to a patient advocate is to organize and work with other patient associations as far as possible and work with other associations and civil society organizations, even if they're not necessarily patient associations in the health space. Yeah.

Caitlin 48:24

Yeah, that's really nice. I guess speaking to that strength in numbers, but also it speaks to what you were saying earlier about representation and diversity. And I know that like there are a lot of countries or even above that, there are lots of regions or even globally where there are, for example, big rare disease coalitions, and it represents all of the different rare disease organizations across different geographies, maybe across different disease areas. It supports with that representation point as well, but also saying, look, we have everyone here. It's not just an individual or one small group. And yeah, I guess that can be really powerful.

Clarinda 49:01

Yeah. Yeah, absolutely. Thank you so much, Deepa. I think that that's a beautiful note to end on. And it's been fabulous having you here. We've enjoyed this conversation a lot. We've learned a lot. Thanks so much. Yeah, thanks so much, Deepa.

Speaker 49:15

Thank you for having me. And yeah, a big shout out to all of the listeners as well. It's been really a privilege to be able to talk about social participation in general. So thanks a lot.

Reflections with Caitlin and Clarinda

Caitlin 49:26

So, Clorinda, we've just had a really enlightening conversation with Deepa there about social participation in health policy. And I wondered if you could just give me your high-level key takeaways from the conversation.

Clarinda 49:38

Yeah, one of the things that was really interesting was around the definition itself. Of course, it seems like a big term, social participation, but it's basically involving anyone who is touched by healthcare in healthcare. And that's everyone. Everyone, in her own words, goes in and out of being a patient. So patient engagement is like a subset of social participation. And patient involvement is a very important part of that because you can't design health systems without patients. But essentially, the idea is for anybody who is affected by health in a particular country to be involved, whether it's in preventive health or health for the elderly or various aspects of healthcare for certain communities, whatever it be. Essentially getting people activated to play a more important role so that it's not just policymakers making decisions about healthcare and those kind of flowing down to people.

Caitlin 50:52

Yeah, completely agree. And it was interesting to sort of understand that intersection, I suppose. And then I guess for me, learning about actually how the healthcare system is set up and how the healthcare policy leads into that was really interesting. So, in terms of how a healthcare system functions, it has kind of four main functions. One is actual health service deliveries. Another is financing, so how is it paid for? And that's done differently across different markets. Another is resource generation, so who are the people who are actually delivering the healthcare? So the doctors, the nurses, the admin staff, everyone who's involved. And then the fourth element is that governance, and that's really where policy comes into play. And essentially those other three parts are how is the healthcare implemented? But the governance really talks about almost the strategy and how that's done at higher level. And sometimes that's sort of the least talked about, even though it actually shapes everything else. So with the WHO resolution on social participation, that sits at the sort of higher-level governance area. And what will be really important moving forward now that that resolution is in place is to actually ensure that it's adopted and implemented by the member states and it actually filters down through into implementation. And like you said, that's why it's really important at that governance level to ask the questions about how the healthcare system is working and what people actually need. So that when it does flow down and is delivered, it is actually serving the needs of the community.

Clarinda 52:37

Yeah, I agree. And I like how she laid out those four elements, really, because it does make sense that everything on a day-to-day basis that comes to implementation is of course addressed because that's what people see, that's what people interact with more regularly, right? When you go to a hospital, you see the gaps and those need to be addressed immediately. But people at an everyday level don't necessarily see policy gaps. And and there are so many challenges to implementing social participation, right? It requires a lot of capacity building on both sides for people who want to get involved, patients, as well as policymakers, even if they have good intent, even if they want to bring people and patients into policy making. It's something they've never done before, it's something they don't necessarily know how to do. And when they're not trained for it, then it risks their efforts looking quite tokenistic.

Caitlin 53:46

Yeah, I agree. I think that capacity building was certainly important. But the other thing, just coming to the end there, where she gave advice for both policymakers but also members of the community who want to get involved in shaping policy, was essentially to be organized, right? Their strength in numbers. So policymakers will usually reach out to civil society organizations or patient organizations, sometimes patient experts as well, but essentially communities who they're trying to serve to make sure that firstly they're being representative. So not just talking to one rare disease organization, but talking to many. Especially working in the World Health Organization at the global level. They want to make sure it's relevant to all of their member states. But likewise at a national level, you'd want to make sure that anything you did was relevant for all different communities, regions, types of conditions that you're talking about. So yeah, ensuring that representation and diversity can be done through multiple groups who are forming an alliance. It can be done by those groups as well by ensuring that they have representation in their organization. And actually, from the community angle, if you are able to be organized, that'll be therefore a lot more valuable to policymakers and easier for them to kind of engage as well. So I think that was the key piece of advice that was given at the end there. So to conclude, hopefully you've learned quite a lot about how policymaking works today. Would encourage everyone to have a look at that WHO resolution on social participation. Yeah. And again, patients, communities, you can get involved just by using your experiences of the healthcare system and talking about those gaps to policymakers. And from a policymaker perspective, there are really strong benefits to involving the community and ensuring that everything that is governed is also pulled through and makes real change.

Clarinda 55:46

And speaking of involving diverse communities in healthcare, we are very shortly going to be launching our series on underserved communities in healthcare. And we hope you'll stay with us for that whole series, which is coming to you very shortly.

Caitlin 56:03

Thanks so much for listening. This has been Not Just Patience with our guest, Dr. Deeper Rajan, and your hosts, Caitlin Rich and Clorinda Serena.