Episode 63
Empowering Voices: The Transformative Power of Public Involvement in Health Research
Welcome to another episode of the Connecting Citizens to Science podcast, where we explore the dynamic role of public involvement in advancing health research. In this episode, hosted by Dr. Kim Ozano, we delve into the impactful world of Patient and Public Involvement (PPI) with insights from the PPI Summer School at the University of Limerick.
Episode Guests:
Dr. Jon Salsberg - Senior Lecturer in Primary Healthcare Research, University of Limerick
A dedicated public health researcher, Dr. Salsberg has an academic background in health promotion and development anthropology. His research primarily explores the dynamics of research partnerships and the transition of research leadership from academic institutions to community stakeholders.
Over his career, Dr. Salsberg has been involved in collaborative research with a diverse array of stakeholders, including patients, health practitioners, community organisations, policymakers, and health service decision-makers. His extensive work with indigenous communities includes his significant involvement in the Kahnawake Schools Diabetes Prevention Project, which is detailed here.
In this episode, Jon discusses the evolution and impact of the PPI IGNITE Network.
Lora Ruth Wogu - Founder and CEO of Sickle Cell and Thalassemia Ireland
Lora Ruth Wogu is an Allied Health Professional and a passionate advocate for diversity, equity, and inclusion in healthcare, focusing on quality patient care for migrants and individuals with disabilities. As the founder and CEO of Sickle Cell and Thalassemia Ireland, she champions initiatives to educate and improve care for those affected by these conditions. Lora also leads the Migrant Health Alliance, aiming to enhance research participation and address barriers faced by migrant communities in healthcare settings. Her work is driven by a commitment to ensuring compassionate, competent, and inclusive healthcare for all, making her a respected voice in health advocacy and policy discussions.
Lora shares her experiences with engaging migrant communities in health research.
Alison Johnson - keynote speaker PPI Summer School 2023
Alison is a passionate advocate for patient, public, and carer involvement in healthcare, focusing on serious medical conditions. Her work in PPI began as a research participant, evolving into roles as a collaborator, where she champions the inclusion of patient and carer voices in health research. A lifelong learner, Alison's voluntary efforts extend to mentoring researchers and advising on best practices for effective patient engagement.
In This Episode:
Introduction to PPI and its Significance
Dr. Kim Ozano introduces the concept of patient and public involvement and its critical role in shaping health research.
Deep Dive with Dr. Jon Salsberg
Learn about the establishment and achievements of the PPI IGNITE Network, its goals for institutional change, and how it's transforming health research culture in Ireland.
Community Engagement Insights from Lora Ruth Wogu
Discussion on the challenges and strategies for involving diverse communities, especially migrants, in health research to ensure their voices are heard and represented.
Experiences from the Field with Alison Johnson
Alison shares her personal experiences and the importance of having meaningful contributions from public collaborators in research projects.
Email us at hello@thesclagency.co.uk for more information or to share your thoughts.
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Thank you for tuning in, and we look forward to having you join us in the halls of the PPI Summer School this June!
Want to get involved?
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Transcript
Dr. Kim Ozano: Hello listeners and welcome to the Connecting Citizens to Science podcast.
Speaker:I'm Dr.
Speaker:Kim Ozano, and this is a podcast where we discuss how researchers connect with people and communities to solve challenges together.
Speaker:And today's episode is a really apt episode in that it is focused on patient and public involvement in health research.
Speaker:I had the honour of participating in a patient and public involvement Summer school at the University of Limerick in 2023, and we will be joined today by Jon Salsberg, who is going to talk to us a little bit about the network and a bit about the Summer school.
Speaker:The good news for you listeners is that the Summer school will be held again in June this year.
Speaker:It's a Summer school that really offers lots of different capacity strengthening sessions so that you can increase your skills on patient and public involvement.
Speaker:So we're going to begin by hearing more from Dr.
Speaker:Jon Salsberg, who is going to tell us about the PPI network at the university of Limerick and the summer schools.
Speaker:So welcome to the podcast, Jon, please introduce yourself and inform us what is this wonderful initiative you have going on in Ireland?
Speaker:Dr. Jon Salsberg: My name is Jon Salsberg.
Speaker:I am associate professor of primary health care research for public and patient involvement at the School of Medicine at the University of Limerick.
Speaker:As you can probably tell from my voice, I'm not originally from Limerick.
Speaker:I'm from Canada, where I worked in participatory research largely with indigenous communities for over 20 years.
Speaker:The network we have is called the Public and Patient Involvement IGNITE Network and this is something that's been funded through the Irish Health Research Board, which is our primary health funder, and they find that they need to build the capacity and change the institutional research culture to allow that meaningful involvement can take place where it has to.
Speaker:And they realise in order to do that, they need to fund that capacity building and that capacity change.
Speaker:So they started this programme back in 2017 for PPI IGNITE to fund individual universities to inwardly look at their own systems and try to change culture within the research environment.
Speaker:Dr. Kim Ozano: What are some of the key challenges you've seen in the culture and practice of involving people in research and science?
Speaker:Dr. Jon Salsberg: The big thing I think has changed is the rapid acceptance and moving beyond this just being a policy initiative or doing it because the government says there must be public involvement into an understanding that perhaps this can make our research more impactful.
Speaker:Perhaps involving people who matter in the decision making about research can actually make society healthier and people happier , and practitioners happier with the evidence they are needing to guide their practice, and I think we're not viewed as a sort of a hindering influence on research quite as much as we were five years ago.
Speaker:Dr. Kim Ozano: And your network, uh, I've seen you have a special relationship with funders here.
Speaker:Tell us how that evolved and how you've managed to work so closely with funders and how it's changed their practice.
Speaker:Dr. Jon Salsberg: Well, I think we have a very enviable position here in Ireland being in many ways tiny it's very easy to make personal connections with people who work in places that have a lot of influence over what goes on, including our primary health funder, the Health Research Board.
Speaker:I can call up the person who's really senior and responsible for all of this and just have a chat, and I know her very well and she's come to the Summer school for six years now to present things and, and just because we have that relationship, because it's so small, and also because the country and the environment for health research is quite tight, uh, it can be very nimble.
Speaker:So, they having an idea, such as, hmm, we should really look at patient engagement and community engagement and how can we change what we do as a funder, to thinking about that as an idea to actually doing something, funding an initiative, and then changing their whole system can take place in a couple years as opposed to a decade or two, which would have taken place in Canada, and I'm sure in the UK or the US as well, that's really, really good.
Speaker:And also I think having people like Anna Cody at the HRB, who is a champion for this way of looking, even though she comes from a basic science background, she wasn't a participatory researcher, but as a funding administrator for the last 10 years, she's seen this is the way to make what her agency does more impactful.
Speaker:And so her as a champion and then her being accessible to us is what really makes all the difference and lets us really be nimble in how we can change the system.
Speaker:Dr. Kim Ozano: So at Connecting Citizens to Science we hear about lots of individual projects rather than the institutional cultural change you're talking about.
Speaker:So I think it's a really interesting perspective for our listeners.
Speaker:I'm going to ask you for maybe one or two pieces of advice for others who want to set up a network and start challenging culture to be more inclusive of public involvement.
Speaker:Dr. Jon Salsberg: Well, I think it's to really do a little bit of, uh, at the risk of using the word stakeholder, like stakeholder mapping in your area or domain mapping in your area to see who are the important players.
Speaker:And then because there's going to need to be change everywhere.
Speaker:And I think everyone needs a change of mindset.
Speaker:And then once there's a change of mindset, their hands will still be tied without a change of policy and procedures.
Speaker:And even with the best intention by all players, they still won't be able to do it because all of their hands will be tied by what their institutions tell them they can do.
Speaker:Then our IGNITE network was really all about that, about bringing all the players together and not being naive that just because we all wanted to change it, it could change.
Speaker:So we have people from government agencies, from local agencies, from institutions, from governing boards, from all of that saying, okay, we recognise things within our practice have to change.
Speaker:So you have to look at your own environments, your own research ecosystem in your own jurisdiction and say, who are the players?
Speaker:Even if they are antagonistic to what we want to do, we can't ignore them.
Speaker:Unless they're really antagonistic enough that you want to take an action approach and sort of combat them by leaving them out until too late.
Speaker:But let's pretend you can be a little friendlier before that.
Speaker:And really try to look at what your ecosystem is.
Speaker:Bring in all the players and start saying, What do I need to do?
Speaker:Because what we did here won't work everywhere.
Speaker:It worked in Ireland because of our scale.
Speaker:I think everyone has to look at their own ecosystems.
Speaker:Dr. Kim Ozano: After speaking with Jon and understanding a bit more about the network and the Summer school, I caught up with Lora Ruth Wogu, who is a public contributor and will talk to us about representation and public and patient involvement in health research.
Speaker:Lora Ruth Wogu: Hi, thank you for having me.
Speaker:My name is Lora Ruth Wogu.
Speaker:I'm the founder and CEO of Sickle Cell and Thalassemia Ireland, but I'm also representing on the Migrant Health Alliance, which is a newly found organisation that is going to help to tackle the issues of a migrant community participating in research.
Speaker:And I was covering the area of representation and participation in research among migrant communities.
Speaker:And migrant communities cover people of African origin, Asian origin, or anybody that has migrated from their country to the new country, which is Ireland and where it's important in participating in research is that they need to be more involved, but they don't know how to get involved because they don't have the information and they don't have any, uh, publications that they can look into and get involved.
Speaker:However, they also have a lot of challenges and bias that affects them in terms of ethnicity and the language, uh, the difficulties in, uh, reading information, but not only that, also the cultural background, and the religious backgrounds that cause them to lack trust in researchers and limits them in their participation.
Speaker:So all those key points are important for researchers to navigate, identify, understand, and have better communication with these migrant communities so they can be encouraged to participate in research.
Speaker:Dr. Kim Ozano: I then asked Lora to explain a little bit more about the distrust that exists within these communities around medicine and research.
Speaker:Lora Ruth Wogu: That stems from a lot of misconceptions or the beliefs that a lot of the diseases that affect the migrant community are very common, for example, in the African origin, such as HIV, AIDS, gonorrhea are all invented from researchers and people who participate in science.
Speaker:Things that start in the European continent and are developed with the basis of the Caucasian skin tone and not considering the black community, uh, areas that, uh, black people, Africans, are scared of, and they lack trust in that.
Speaker:And also because of slave trade, how the slaves were treated and how they performed a lot of tests on them, that they introduced these viruses into their bodies for the sake of trying to find a cure.
Speaker:And yet even when they found the cure, they did not provide that cure to these subjects.
Speaker:They rather gave them to the Caucasian population.
Speaker:So lack of trust is stemmed from previous history of what has already happened to this community.
Speaker:And that is what needs to be eliminated to encourage them to now trust in science.
Speaker:Dr. Kim Ozano: I wanted to understand a little bit more about Lora Ruth Wogu's role as a public contributor and how she bridged communities and research and science.
Speaker:Lora Ruth Wogu: I use both my experience as a person and as a community leader and as well as my experience as a health care professional to bring that information or that knowledge to our community and help them understand, and maybe help them to eliminate the fear and help them build trust slowly and gradually into participating in research.
Speaker:It's not a magic wand, it's gonna take time, but we are hoping that in future it will be much more better than it is at the moment.
Speaker:Dr. Kim Ozano: I then spoke to Laura about what she would advise us as researchers to do early on in the research process to better involve communities that we're working with.
Speaker:Lora Ruth Wogu: What I would say to researchers is to involve the community early on, and to try and not look at the color of their skin or the language or any barriers that they may encounter.
Speaker:If there are any barriers, for example, some of the migrants don't speak English, it's to try and put solutions in place on how this migrant can participate in, in the research, uh, even though they don't speak English.
Speaker:Communication and openness, and also, uh, make the discussion not focused on so much as research, but the actual piece of what the researcher is doing, that kind of touch into the the participant and that will be more helpful.
Speaker:It's, it's all about communication on a personal level, even though they are not connected, but to make the person as if you know each other already and talk about the issues, the researcher will learn a lot.
Speaker:Dr. Kim Ozano: After speaking with Lora, I then caught up with Alison Johnson.
Speaker:Alison Johnson was the keynote speaker at the conference, and I was really impressed by how she
Speaker:communicated
Speaker:Dr. Kim Ozano: her role.
Alison Johnson:I started out a long time ago as a participant, in other words, somebody who would be called on to do something as part of a research project.
Alison Johnson:That covered many, many things.
Alison Johnson:And then later when I retired, I was still doing some of that, but then I got the opportunity to be part of a research project as a collaborator.
Alison Johnson:That was a fantastic experience What I was saying, what I felt mattered, became part of the end product which was lovely.
Alison Johnson:But also, you do need to be critical.
Alison Johnson:You do need to put your views across.
Alison Johnson:And say, look, um, that's not going to work.
Alison Johnson:Or, that's not quite how we think about things.
Alison Johnson:All those sort of comments, issues, questions.
Alison Johnson:I think the advice I've got for people writing these proposals is really take the time to make sure that that you've got the right people as part of your research team, because they will be able to help all the way through.
Alison Johnson:Dr. Kim Ozano: Well listeners, I hope you enjoyed our conversations in the halls of the PPI Summer school at the University of Limerick.
Alison Johnson:I'm certainly looking forward to attending in June this year, where I have the honor of being a keynote speaker and sharing some of my insights on power, so I look forward to seeing you there.
Alison Johnson:It would be great to hear some of your comments and thoughts on public and patient involvement and inclusion, either on Twitter, our handle is at podcast underscore CCS, or you can email us on hello@thesclagency.co.uk.
Alison Johnson:And as always, thank you for listening.
Alison Johnson:Do please like rate share and subscribe to make sure you get the latest episodes and until next time, bye for now.
