Pru Etcheverry
Regional Director, Asia Pacific
Lymphoma Coalition
(New Zealand)
Can you introduce yourself briefly and share your connection to patient engagement?
Pru: Thank you for this opportunity to be interviewed as patient engagement is of great interest to me. I am the Regional Director for Asia Pacific for the lymphoma coalition, which is a global grouping of predominantly blood cancer organisations, and specifically, many of them lymphoma organisations. My background has been in patient advocacy and patient organisation management prior to this as CEO of Leukemia and Blood Cancer, New Zealand. So, I have had a long engagement working in patient advocacy and patient engagement organisations.
From that perspective you've shared, may I ask, what does the sustainable health system mean to you?
Pru: When I think about that question, I kind of think sustainable for who? During the pandemic, (because we're in this situation), we have seen different countries valuing healthcare in different ways, or valuing economy over health or health over economy, and different challenges facing different countries. And we've all been able to see this play out and how the pandemic has devastated even some of the strongest of healthcare systems. It really highlighted, I think, the strengths and the weaknesses in health care systems around the globe. In Asia Pacific, it highlighted where ongoing investment was needed yet had not happened as well as long term planning.
But most central of all, for me, was inequity. And I think it was always there, of course, but it's now way more visible ,the inequity within health systems. I really believe that addressing this is integral to having sustainable health care systems and having measures in place where groups, individuals and organisations can have an opportunity to participate. It's not particularly sustainable, where that's not happening. I think we're seeing the most vulnerable people, through absolutely no fault of their own, may be the least able to adhere to some of the health messaging and maybe their living situation or access to transport or underlying health conditions or language barriers, lower literacy levels, and many of them are essential workers and have been put at the greatest risk.
But there's also international equity issues to consider here. You know, we don't see equitable access to the vaccines around the world. And we've got countries who are perhaps hoarding or wasting vaccines, we're seeing some countries well into the program, where they're administering third doses to their population, which on one level, of course, is good. But other countries are still waiting for the first supply. And even if you look at those that are receiving third doses, that still only a percentage, and great sections of the community are left out and not having any access. But I also think there's other things that are going to challenge the sustainability that we need to keep in mind, everything else that has been put on hold while we face and battle COVID-19: delayed surgeries, delayed diagnosis, mental health issues. So it's really important and more important than ever, that we actually start to look at equity within our healthcare systems.
Thank you, that's a really multifaceted view of sustainability in the health system. So, based on all these different ways, talking about sustainability, equity, access, and all these aspects, how can patient engagement actually support sustainable health systems?
Pru: I think it's essential, but I think it's also wider than simply patient care. Whether it’s consumer or citizen engagement, it needs to be valued and built into decision-making processes, not a tick-box at the end. Because we're really losing a wealth of information if we're not considering the views of communities, it isn't always about money. Sometimes, it's sort of quite practical things, I think that could happen. Health literacy is a great barrier for people to be able to participate. And again, that leads to inequitous situation. So addressing those areas would be really, really valuable. And we've seen with the pandemic, patient organizations and NGOs springing into action to support vulnerable populations, and act as a conduit, sometimes for delivering a service. But we as a society, need to better value our NGO organisations and ensure that they are better positioned, better funded to involve and, and solve some of the problems because some of the problems can be solved at that level. But they need access and a voice to do so. So I think it's really about looking at value not just cost and deciding what we want to value within that.
Thank you. So maybe you can share, you know, in what ways are patients being engaged in health systems or health organizations that you are familiar with?
Pru: One of the areas that I'd like to talk about with Lymphoma Coalition, is we are there globally to support the individual patient organizations who are members, we see the best way we can do that, and it's working, and this is through data. You know, if there's no data, it's often considered that there's no problem. But sometimes there’s the need for data to be able to convey the problem. So one of the tools we use for this is the Lymphoma Coalition Global Patient Survey. And globally, around 12,000 participants take part in the survey and within Asia Pacific it’s nearly 5000 patients and caregivers. The patient organisations are not only using that data to actually understand gaps in their own services, and where they can better serve patients but also to inform policymakers, to inform clinical guidelines or healthcare professionals or to contribute to HTA. And what we see working is empowering those organisations with that data, and then supporting those organizations in how they use that data. And so we will see data has been really working well. But it is also helping organisations on how to use their data, which in turn trickles down to how patients themselves get a voice.
Thank you for those examples. So it seems there is something happening now with the surveys, patients are getting involved. What more do you think can be done for patient engagement?
Pru: Yes, I think really talking generally, I'm still going to talk about equity. It's time that we, generally across all countries, take a wider focus than just a definition of health or ill health and look at wider domains of well-being. Because they play into health, whether it's housing, social connections, or cultural identity or ability to earn as wider aspects rather than being siloed systems that are outside of that, because they strongly feed into health and well-being.
The mentality does need to change from putting in place systems that haven't been actually checked on if that's what's needed. So sometimes we see a lot of waste from that, whereas more valuably, I think we could see barriers to participation being addressed. I mentioned health literacy and it could also be language barriers themselves, in addition to location, being rural or being outside of main centers. Most importantly, it's surely not that hard to put in place platforms and space and frameworks that welcome and value participation from consumers who really do need to be heard. Obviously, medicines access is an obvious area for that, and having patient voice in HTA. But it's wider than that, it's way bigger than that, having participation of the community with patient engagement. An example of that here in New Zealand, and again, right now citing the pandemic, our Maori and Pasifika communities, their health is a huge priority for our country and for our government to focus on. But those very communities, we're asking quite early on for the opportunity to be part of solving the issues that were going to surface with the pandemic, and with vaccines and vaccine rollout. And they were listened to, in my opinion, a little bit too late, because actually, the solutions for bringing greater vaccination rates into those communities lie within those communities. And instead of having an outbreak happen, we could have prevented that a little sooner by listening earlier. One size doesn't fit all. So, I would very strongly come back to a wider focus and creating space, and really valuing and listening to the engagement of our wider communities within our countries.
That's true, that's a really important point to mention. Maybe I'll just ask you to leave us with some advice here at CAPE. How do you think multi stakeholder and regional platforms such as CAPE can support patient engagement in the region?
Pru: I'm really excited about CAPE, I think it's a wonderful initiative. And it's an opportunity for all parties to really hear and understand what the challenges are for all of us. So I know a big focus on that is through patient engagement, but it's understanding what the barriers are to that really happening meaningfully. I think we saw examples with even picking something like clinical trials during the pandemic, where things that had not been possible before suddenly became possible. Things that have been asked for previously became possible quite quickly through the pandemic. And that might have been medicine supplies being able to go to the regional centres and less need to come to a main centre for tests, having an online consultation, those are just a few examples. But it's understanding how those things actually quickly changed when we had a crisis yet communities have been asking for them for a long time. So I think all of us being able to listen to the perspectives of others and understanding how we can build that together is an exciting opportunity for Asia. So I'm pretty excited about the way this has been put together.