Not Just Patients

Advancing Equity, Diversity, and Inclusion in Healthcare┃Prof. Lara Bloom

• Caitlin and Clarinda • Episode 9

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Join us for a compelling conversation with Professor Lara Bloom, President and CEO of the Ehlers-Danlos Society. A strong patient advocate, Lara has a passion for pushing boundaries and fighting for progression DE&I in healthcare and LGBTQIA+ rights.

Throughout our discussion, we dissect the complex relationship between health equity and inclusion on a global scale. The episode also explores the transformative power of patient engagement in achieving health equity, emphasising the importance of true representation and inclusion.

Chapters
00:00:00 - Introductions
00:01:20 - Lara's journey into advocacy
00:04:16 - State of DEI in healthcare
00:10:45 - Challenges viewed through a global lens
00:15:00 - Interplay between health equity and diversity & inclusion
00:17:40 -  Understanding diverse communities and minorities
00:24:05 - Need for better representation in healthcare
00:29:09 - Evolution of DEI in healthcare
00:35:13 - Initiatives working to further DEI in healthcare
00:37:18 - Understanding privilege in the context of healthcare
00:40:42 - Mindset for overcoming challenges
00:44:03 - Future and advice for healthcare stakeholders
00:47:00 - Advice for patients and patient advocates
00:48:56 - Power of patient organisations
00:54:53 - Reflections with Caitlin and Clarinda

Resources and 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

Speaker 1:

how that starts to really shift the needle is when everyone realizes we're not talking about everyone having the same. We're talking about everyone having what they need where they are Hi.

Speaker 3:

I'm.

Speaker 2:

Caitlin.

Speaker 3:

And I'm Clorinda and this is.

Speaker 2:

Not Just Patients a podcast where we break barriers to meaningful patient involvement in healthcare.

Speaker 3:

Thank you so much for tuning in. Our guest today is Professor Lara Bloom, and she's here to talk to us about equity, diversity and inclusion in healthcare.

Speaker 2:

Lara is the President and CEO of the Ellis Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ellis Danlos syndromes, hypermobility spectrum disorder and related conditions. A strong patient advocate, she has a passion for pushing boundaries and fighting for progression in diversity, equity and inclusion in healthcare and LGBTQIA plus rights. In 2020, Laura was officially appointed an academic affiliate professor of practice in patient engagement and global collaboration at Penn State College of Medicine. She is a published author was officially appointed an Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine. She is a published author in various renowned journals and speaks as an expert keynote speaker at events worldwide. Thank you so much for joining us today, Lara. It's a pleasure, it's great to be here. So, just to start off with Lara, we'd love if you could tell us a little bit about your story and how you got involved in patient advocacy and engagement.

Speaker 1:

so I have been working in the field of rare, chronic and invisible diseases and, of course, with that advocacy, for 15 years now. I don't really know where that time has gone. I first got into this ultimately as a patient myself who was at a very serendipitous time looking for a new career because my health had impacted my career as a photographer at the time, and so I'd taken myself back to university to study global politics and international relations to try and have a different career. And whilst I was doing that, I agreed to work part-time for what was then the UK organisation, the Eders Danlos Support Group, which became EDS UK. When I started working there and I thought it would be short-term, and I ended up running that organisation and had a great time, and when I left, it was one of the biggest EDS charities in the world.

Speaker 1:

But I just realized that everything we were trying to fix, there was only so much you could do on a national level. It was almost like putting a plaster on this gaping wound and I realized to really tackle it systemically, we had to go global in 2015, which I can't believe again will be a decade next year um, I left, set up what is now the Ehlers-Danlos Society. And I did that in collaboration with what was then EDNF, which was the US organization, the Ehlers-Danlos National Foundation, and initially we were going to do them alongside, in parallel a US organization and a global one. But we realized very quickly we were going after the same healthcare professionals, stakeholders, same donors, and so we kind of closed down EDNF and relaunched out of that society, utilizing some great board members and volunteers that had been along since the 80s really, when that began.

Speaker 1:

So it was this really wonderful mix of a new mission and vision, but with really deep roots, of an organization that had been there for a long time. And yeah, I mean obviously there's a real advocate in me as someone that realized how much there was to do, and not just in the world of PDS and HSD, now that we know, but in access to care and treatment. So that's how it began. And here we are, like I said, 15 years later. This is my career, I love it, I live and breathe it, I'm a workaholic, it brings me immense satisfaction and joy and I still feel like we're at the bottom of a very big mountain, but at least now we've got the equipment, we've got a route and we know where we're going.

Speaker 3:

Yeah, that's lovely, and I think that we've been following your story and your work for a while now and it's clear that you wear a lot of hats. Since we're focusing on DEI on this episode, I wanted to understand your motivations for that particular theme and what you see when you think of DEI in healthcare.

Speaker 1:

I think we live in a world it's 2024, and I think, depressingly, we still live in a world where gender, race, sexuality, geography and wealth still determine your quality of life, and that's all over the world, that's not just in certain countries, and it's just simply not good enough really that that is the reality of the world we live in and, as a gay woman who's also faced barriers to things because of those reasons, I acknowledge that.

Speaker 1:

But I also acknowledge my privilege and that I have world-leading access to care because of the position I'm in with work, I can pick up my phone and text a colleague and find out who the best doctor to see in X, y and Z is.

Speaker 1:

I have the privilege of having private health care in the UK and I know that the reality is, if you're relying on the NHS and you've got hypermobile EDS in the UK, you have a really depressing route of access to care. There's some excellent places, but they're few and far between and the wait lists are so long. So I think that I see it every day through the eyes of many members in our community. I see it in my own journey and I see how many various degrees of viewpoints there are. You can speak to an African-American woman in America who has had a appalling journey to diagnosis and had multiple barriers to access and see the reason for that as racial, which it ultimately I'm sure is but then you'll see a white woman in the UK having the same access issues for different reasons, and none is right and none is wrong. None is worse, none is better. It's this multitude of barriers all stemming from this same inequity and it simply needs to stop.

Speaker 2:

It's interesting, isn't it? Because I think health care as a whole, while it's been improving rapidly and there's more care available, more treatments available, there's more innovations to help people, I think it's probably widened those gaps in care from the people who are getting really the best care that is available to the people who are still in the same position. They would have been 100 years ago maybe.

Speaker 1:

Yeah, I mean exactly. You know, I see messages every day when we're posting uplifting, optimistic, progressive news that things are improving, and I see people in Europe, in the UK, in America, in Africa, saying but I still can't see anyone, I still can't get a diagnosis, I still have no access to anything when I do get a diagnosis. So tell me what's changed. And it's really depressing that you're doing all this work and there's been all this advancement and millions invested into research and we can see the needle moving, but it's not yet trickling down to access to care and delivery of care. It will, but what people forget is that we had decades of neglect in every area that you can imagine. So it wasn't really and I don't mean to blow our own trumpet, but the reality is it wasn't until we launched in 2016 that we saw how this huge gaps in research and education in progression, in even having an up-to-date diagnostic criteria. We knew that because of clinical practice there were more than six types, but in the literature that's all there was. You know there needed to be advancements and we changed that when we launched and things have been moving forward, but we've almost started from the beginning after this condition has been there for for many, many, many years. So people are like, well, it's still not getting better. Well, we've really only had just almost a decade to fix, decades of there being nothing. And we're getting to the end of that first decade where there's a promise of biomarkers for hypermobile eds.

Speaker 1:

We're approaching our second revision of our diagnostic criterion classification. There's a promise of biomarkers for hypermobile EDS. We're approaching our second revision of our diagnostic criteria and classification. There's going to be more of an update on management guides. We're going to have diagnostic pathways. We're going to have an education dissemination plan which we're going to roll out around the world where we finally feel like we've got the best out there that there is based on the knowledge that there is done in a very, very thorough review system, globally and internationally, peer-reviewed and tested.

Speaker 1:

So we're going to be in a stronger position than ever come 2026, 2027 and I feel like it's at that point people will start to feel the repercussions of that change and then that's probably going to be for the privileged few immediately, and then again you're going to be challenged with the systemic issues of inequity that we face everywhere and at that point the society will be like okay, we're here, we know what this is, we know what we're calling it, we know what the up-to-date information is. Now how do we go to africa and make it a reality for people to get diagnosed when at that point, we might be even saying it requires a blood test or genetic testing? How do you put that forward in a country where there's a handful of geneticists and no hope in getting genetic testing? So you have to be real with what you're dealing with. What people need in lower middle income countries is very different to kind of the western world and the us, europe and so on. So we have to find a way to break through each and every one of those barriers in a way that equals people getting what they need.

Speaker 1:

And we're not just facing an issue of eds and hsd. We're facing an issue where rare and chronic diseases don't have the funding and the pathways that they need. So, for example, in the uk, if you're diagnosed with a rare or chronic condition, you're not entitled to physiotherapy for life. For example, you're not entitled to physiotherapy for life. For example, you're not entitled to mental health assessments to check how you're coping with that. These pathways are just not there, embedded into the systems. And with all the will in the world. It probably isn't going to be EDS that changes that, but we're going to do our damn best to show through, leading by example, of what these best practices should be.

Speaker 2:

Yeah, and it's kind of what you said before about recognising privilege as well and also feeling like you don't have enough, because what I always think about is the UK is obviously we do have a national healthcare system, so we do have, in theory, free access to healthcare, but, like you say, it doesn't mean that everything that everyone needs is available. So it's such a huge sliding scale of things, but I guess the goal is to make sure that everyone can have the best access to care, which feels a little bit like an insurmountable task to be, honest, the scale of it is a lot bigger than people realize, so I think I can relate a lot to everything that you've spoken about, lara.

Speaker 3:

I live with a rare disease. I have neuromyelitis, optica spectrum disorder. I live in Mumbai, india, and I work in a global fraternity, as it were. The patient organization I'm associated with is global, so so I have privilege for my time and space. For sure, because, like you, because of my work, I am connected. I can reach out to doctors.

Speaker 3:

But in India the problems are so much more grave systemically. I mean, there is a whole literacy and health literacy angle to rare diseases never getting diagnosed or people never getting their voices heard as to what their symptoms might be gaslighting. And don't even get me started on minorities. So, for example, queer people have no place currently in the health system in India, even women, for that matter. So I see it, and it is such a tragic and difficult place to be in because I can see both sides.

Speaker 3:

I can see the progress that's happening globally. I can see that rare disease now has three approved treatments in the us which will never, or at least not in the next 10 years, come to india in a way that they are reimbursed or offered to people with this condition. So so, yeah, I'm glad that we're talking about these things. I think that there's always hope for us to be a little depressed when we talk about them because, like Caitlin said, it does seem insurmountable, it does seem like there's no way we can get there. But then we're chipping away and making small strides, and I think that's important.

Speaker 1:

I agree, and there's also the cultural references that people don't talk about enough. For example, in many countries around the world certainly in Africa, I believe in India as well there's cultural nuances that people believe and it's. It's ultimately down to different religions as well. That disease can be something that you have to hide from the rest of your community or villages, that it's a curse. The devil is involved, you know. You hear harrowing, awful stories about how people believe that a rare disease is the will of God. And it's just awful.

Speaker 1:

And how do you even go about correcting that or educating that when it's so deeply rooted into religious belief and cultural norms in parts of the world where that is their reality Absolute black and white. There's nothing that any person could come in and try and explain that there's efforts to absolutely, but you're not going to really get to the bottom of the root cause of that. So you know there's the broad issues, the bottom of the root cause of that. So you know there's the broad issues of people in the uk can't get access in on the nhs to health care. But then you can't unravel and unpeel this onion. And you know, the beauty of taking on a challenge through a global lens is that you see the entirety of the problem, but you then take on the entirety of that problem.

Speaker 1:

And one thing I almost miss about looking through things on a national lens is okay, we've just got the NHS to deal with. How do we lobby? How do we get politically involved? How do we speak to the right MPs and it's a very focused approach how do we deal with cultural challenges in small towns in Africa and villages?

Speaker 1:

And how do we deal with the health care insurance in the US and the fact that people fight getting a diagnosis because once it's on their records, they then can't get insured, versus in Belgium who, if they're told, now that they have HSD, there's no access to care whatsoever. But yet all the geneticists are closing down their clinics for hypermobile Es because they don't have the funding and capacity to deal with those numbers, but there's nowhere else for them to go. Every country thinks the grass is greener on the other side and let me tell you with absolute assurity, standing on the top of this globe and looking around which I have the privilege to do and see all the issues, there is not one country in the world that's got it right and that has all the issues ironed out and complete perfect pathways and access. There isn't. Every single one has a challenge and it's the patients, it's the people living with these conditions that are feeling it every day.

Speaker 2:

Yeah, yeah. So just in terms then of, I suppose, the phrases we're using today. So I think what we've been speaking about a lot is health equity. So, what is the scope, then, just moving to the other side of that phrase, of diversity and inclusion in the context of health care, and what's the interplay between the diversity and inclusion and health equity?

Speaker 1:

I mean it's complex for sure. I think diversity and inclusion is. We're living in a world where more and more people are free or want to be free to be who they are and what they are, and with that brings joyful diversity, and in all different ways, and the world, to an extent, is catching up with that and in more places and more and more places being willing to catch up with that diversity in the range of terms and groups people can choose to be in, and we know that there's lots of places in the world that are fighting against that and people don't feel safe and don't feel that they are living in an inclusive world and that's probably the majority, unfortunately and that diverse representation is there across the patient community, and yet the diverse acceptance throughout healthcare is not, and so the two are at conflict with each other.

Speaker 1:

And that conflict leads to inequity because you have groups of individuals who do not feel, because of their diversity, that they can get the access they deserve and should expect. And that can be. It's often based around sexuality and gender, but it can also, of course, be race, and we hear time and time again of people of color not getting the equal access that others may have uh privilege to. So you know it's complicated. You also see this picture of women who, if we look in the eds world there's no gender bias in eds, but yet we see a high prevalence of women who are seemingly more symptomatic and going to the doctor or healthcare professional more, and they are labeled the anxious woman, depressed anxiety, and are not validated or taken seriously and they are bounced from doctor to doctor and they don't get the access and care and equality that they deserve either.

Speaker 1:

so there's just an abundance of issues there. But I think the two go hand in hand, because if you don't have inclusion, you're not going to have equity, and that's just the reality of all situations. But you see it presented on a very big scale in healthcare.

Speaker 3:

Yeah, I agree, and I think that you mentioned a few groups, for example, that might typically be excluded. But just to help our listeners get a better landscape view of communities that might typically get excluded, you mentioned women, for example, people of color, but I'm sure that there is also a cultural angle to that, where a minority becomes a majority in some cases, and how is that viewed then at a holistic healthcare level?

Speaker 1:

Sure, I think.

Speaker 1:

Then you have issues where the geography and the financial capabilities of a country or area determine that diversity. And then you've got the rich and the privileged being able to access something that others can't. But there's also, as I said, a lot of inequity amongst the LGBTQ plus community, which are living and struggling to breathe sometimes, but living and breathing in every country in the world and for some it's legal and they are accepted. But even when they are for within different places towns in america, for example people feel that their life is at risk and that they won't get the access to care. You know, for a lot of trans people, for example, health care goes hand in hand with that way of life and that way of living and if people don't feel like they have access to life-saving drugs that can help them to live in the body in the way that they need to. You know, we see examples of of, unfortunately, people taking their life and, you know, death by suicide far too often and that's due to a lack of being accepted and and their diversity not being handled in the right way when it comes to health care.

Speaker 1:

So I think that when you look at different countries around the world, say in Africa and it and it's interesting, I was with a colleague from South Africa who's a white woman and she was talking and she went. I thought I can't speak, often representing the voice of African women because she is the minority, being a white woman, and so you know it's an interesting parallel, depending on where you are geographically. More South Africa it's usually, you know, stereotypically, the white person who has better access to care and good medicine and the ability to afford private health care, even though they're the minority. So minority doesn't always mean worse access and a worse outcome.

Speaker 2:

Unfortunately, it's still race that determines that yeah even in a country where a person of color is the majority yeah, I think you're speaking a lot to again how society influences health care in a way, because it's sort of how society is around things like race, rather than it necessarily being a minority or not, but that impacts how they access care and likewise with women and men.

Speaker 2:

It's, you know, roughly 50 50. It's not that women are a minority, they're just experiencing care differently. And actually, as well as the geographic context, I think there's also even differences depending on what kind of health care we're talking about, because in something like breast cancer, men are the minority right, because health care in that space, and education and awareness, is mostly targeted towards women, who are the majority there. Then that means that I think men sometimes are not diagnosed or not getting the treatment they need as soon, whereas the opposite is true with heart disease, whereas a lot of things that everyone knows about heart disease is what men experience when they have a heart attack. And then women are often, I think, like you alluded to before, sort of sent home with just that's gastric reflux kind of thing. Actually they're having a heart attack. So it's complicated because you can't sort of pinpoint who, in any situation, might be someone who's not receiving equitable care yeah.

Speaker 3:

So I read a story through patient story about a man, black man, living in the us, who has sickle cell and he had developed a sickle cell related stroke and he was well aware of his symptoms. He called 9-1-1 and he had lost function of his dominant hand, with which he writes. When he was brought into the ER they assumed that it was an overdose because of where he was and, I guess, his profile and he could hear the healthcare professionals talking around him and mentioning that you know, this looks like an overdose and and he couldn't speak. But he managed to signal for a paper and pen and with his non-dominant hand he managed to scribble sickle stroke, which is the only reason that it was escalated, and he got the treatment that he actually needed. And I mean, it's just an example of needing to advocate for yourself, but a lot of people in this minority position don't even feel equipped to advocate for themselves or they kind of accept the gaslighting and discrimination, as it were, because it's almost part of their life. Yeah, and that's quite a sad thing.

Speaker 1:

Yeah, and how many stories do we not hear um like that, where the person didn't survive to tell their story? I think the health disparities in the US are shocking they really are and we hear awful stories. But it's also like you were discussing about men and women, and I think what's really interesting is we get messages a lot, the irony of looking at it from another angle, where men don't feel represented or they're getting their access to the care that the society can provide because there's so much of a dominance of resources and things skewed towards women or not men specific, and it's funny that you then see that they don't feel like they're getting equitable care and access from the society, based purely on not a lack of effort or want, but because there's not as many resources, because so many studies are with women, so many anecdotal knowledge is from women, and so that's also very interesting and I think that needs to be explored.

Speaker 2:

And we're certainly looking at trying to diversify our resources to be more targeted to older people living with the condition, to men, you know, and then the abundance of geographical regions that we have where our resources are not tailored to dealing with the barriers that they face, you know, in healthcare, yeah, and I think the healthcare space generally, and especially patient engagement, patient advocacy it does tend to be there's more women than men in this space, right? I don't know if there's a reason why that is, but I do think that it does have an impact because, you know, men and women have different experiences of life in society and also so important to have research that can be looked at in both men and women how it impacts men and women but also then the more societal advocacy side.

Speaker 2:

the representation also needs to be there for both men and women. And then, when you start thinking about all these groups we're talking about, we just need more representation across all different types of characteristics as well, and then just getting more people in advocacy I I suppose that people can relate to and making sure that when you're developing, for example, materials for patients or even developing a medicine, maybe that trying to get that representative and diverse input from all the different types of people who are in that patient community is so important.

Speaker 1:

Yeah, and I think what's important as well is when you're thinking about representation of diversity. Something we've been working on a while through our Breaking Down Barriers campaign is trying to get better representation in medical journals and medical libraries, and there's just not representation of colour or gender or age in EDS and hsd at all and, in broadly, in rare diseases, and it's an issue that people are highlighting and we set out a kind of project of our own to reach out to doctors and, where there is permission given, to try and access visual photography of people's skin, people's visual presentations. I think we got next to none.

Speaker 2:

Wow, you know which represents the under-representation in clinic, and I think it's not lack of people living with these conditions, it's lack of representation and that leads to problems in even sort of diagnosing right, because, if I know, if there's something dermatological, for example, and all the journals have how it looks on someone with white skin, and then if anyone has darker skin, then it might not be recognized because they're literally the doctors aren't being taught to look for that. And actually in my community so I have cystic fibrosis for years and years and years it was a Caucasian disease. The tick boxes were do they have all of these symptoms and are they white? And actually recently they found out that that's not the case. So it's amazing.

Speaker 2:

Cystic fibrosis actually is one of the most well known about rare diseases. There's a lot of research, there's a lot of fundraising, public awareness, there's, you know, a screening test in a lot of countries at birth, but there's still now a massive gap in terms of people who are not white getting diagnosed and actually the treatment that's been developed is for the mutation in white communities, so a lot of people of color don't have access to that. So I think cystic fibrosis is an amazing example of how far people can go in terms of awareness and innovation and treatment and access to care, but also a massive example of how you can leave whole communities behind if they aren't included in that process and I know that there's a lot of work being done now to close that gap, but it's already so far ahead for white communities that actually it is a real shame that I do feel like people of colour feel like they might be being left behind in that conversation because they aren't diagnosed if they've not got the screening test at birth.

Speaker 2:

And then if they are, if they are late, potentially there's not actually that drug available if they don't have the right mutation, which a lot of them do not, because the research was not done in their communities. And just to be clear, I know that the patient advocacy community and the medical community are trying to fix that, but they are several years behind yeah, I just was at the global genes conference in the USA and I try to rack my brains for the name of the person now.

Speaker 1:

I can't, but it was this you know amazing woman who set up a non-profit because of her husband who is a black man in his 60s that wasn't diagnosed with cystic fibrosis, despite having his whole life in his 50s, because every time he went with textbook symptoms of CF he was told it's impossible to have it as a black man. It wasn't even considered and he had never heard of it. So he wasn't, you know, and it wasn't until his wife said I think you've got cystic fibrosis. It's just astonishing to me that a doctor did not pick it up and the only thing that buried his ability to diagnose appropriately was the color of that man's skin. And my God, that's in America. You know the free world, the leader of all, apparently, but actually some of the most pressing examples of inequity of healthcare I've seen in the USA.

Speaker 3:

So I'd like to move on a little bit, lara, and talk about how the conversation around DEI in healthcare has evolved. So how did it originate? How far have we come? I know that we have a long way to go and we spoke a little bit about that, and this will probably be well into several generations after us as well, but it would be nice to understand that trajectory you know I'm not an expert, knowing the history of that at all, and what I think we all know is it's always been there and I think it evolves with every generation.

Speaker 1:

As to what that looks like, for example, the conversation about transgender, lgbtq is not the conversation it would have been 30 years ago. So everything is constantly evolving. I think George Floyd and everything that happened to that opened and allowed for a lot more conversation about inequities amongst black people in America, for sure, but around the world. But you know, using that example, and I think that also changed the ability to be able to talk about it and protest about it more freely, and I think that that just will continue to keep evolving. I think the COVID pandemic showed us about inequity around the world in terms of access to vaccines and how pharma and corporate companies take advantage of that inequity, and I kind of despair, really, for the issues that we're facing around the world. There's such a gigantic mountain to climb that it feels impossible to even start to climb it yet people are on that ascent and it's improving for sure, but there's so far to go.

Speaker 1:

I think just the world we live in is exposing us more and more to seeing for ourselves just how bad things are, and I think things have got better.

Speaker 1:

And I think things have got better, I think things have got worse, but what has improved is the ability for the world to see it, and so I think, more than ever, we're more aware of that, and I think that's what is important and we can look back and we can learn from examples of how, even embedding lived experience into things you know, that really kind of came to light during the AIDS epidemic and how lived experience was brought in and prioritizing people living with these conditions and diseases in a way that hadn't really been done before, but it's still very embryonic in many ways as well, and we don't even really know what to call it, and I just think there's a long way to go.

Speaker 1:

And that's the same for health equality and I think equity is even harder to tackle. Nothing will ever be equal, but I think we can get to a place where we can have more effort for things to be equitable, and I think how that starts to really shift the needle is when everyone realizes we're not talking about everyone having the same. We're talking about everyone having what they need where they are, whether that's where they are in their life in terms of age, where they are geographically, where they are in the journey of their disease, where they are in their journey of sexuality and gender, where they are in terms of race and where that sits within where they are. It's just understanding that people need different things at different times to get the care that they need and it comes back to this theme.

Speaker 2:

I think that we've spoken about with lots of our guests that I know clorinda and I think is very important, and why we've called this podcast not just patients. It's about considering people as a whole rather than just considering them according to their medical profile. It's about thinking about them in the context of their life and exactly, as you said, where they are in their life, and even going a step further. And it's what do they want? What are their values? Values, that kind of thing, because that's all personal choice. So it's about remembering that people are people and not just patients.

Speaker 1:

Yeah, I mean, it's what I talk about day in, day out. I remember I spoke at the World Health Assembly this year and I closed my talk saying we are so much more than patients. You're only a patient. When you're in front of a doctor, you are a parent, a sibling, a student, an educator, someone working. You know, you're someone experiencing the continuum of life, and one aspect of that at some point makes you a patient, and it's everything else. It's your lived experience of everything else that then contributes and influences your experience as a patient and that should be seen in the same way, so that health care providers are understanding that when you're in front of them, there's so much behind you that they don't see. That makes the person that they're seeing right and I think language is powerful.

Speaker 3:

Right, because when we're talking about the evolution, the fact that the terms diversity, equity and inclusion inclusion which have become, you could say, buzzwords or a trend or whatever in the last 15 years, maybe I think that that is powerful because now it's something that's going to stay and, as you mentioned, there's always been inequity, there will always be inequity, but the fact that we are calling things out, at least we have labels for them, means that we're seeing them more, and when people are seeing them more than at least it's the beginning of a potential change for that inclusion to happen a little more I mean I'm kind of shaking my head, because there's also the acknowledgement of the movement in the us right now.

Speaker 1:

now DEI is dead, so I think that everything's evolving and there are people that want to put a stop to this you know, and I think after George Floyd and after COVID, it was like, yes, this is important. And now? It's being dismissed again, and roles and departments within organizations focused on DEI and ESG are going, and so I wouldn't get too positive about that, because I think the reality is a little bleaker it's a good thing we're doing this podcast on this topic so I think we've talked a lot about the doom and gloom side in the mountain.

Speaker 2:

I wondered, lara, if you could tell us a little bit about, maybe some initiatives that are happening that are trying to further diversity and inclusion in health care and improve health equity. What are people doing to sort of start to climb this mountain?

Speaker 1:

so I think in the rare disease space and generally really across all chronic health, there is a lot of movement to, as I said before, really bringing in that lived experience piece, and by doing that you bring in representation and diversity, which will hopefully lead to a bit more inclusion but, that's definitely moving along.

Speaker 1:

There's the patient movement catalyst, which I'm part of, which is trying to look at this and seeing how we can just keep things moving and being embedded into things systemically and not just tokenistically, you know, not just a tick box of patient involvement, personal involvement, really just much more than that. So that's going on and that's comforting. I think that something that I appreciate, as well as the acknowledgement of mental health being brought in to the care of people living with conditions and how that should be assessed in the same way that physical health is.

Speaker 1:

So I think that will again lead to more inclusion and that should improve things in terms of, through the lens of eds and hsd, we're working on something called the road to 2026, which is looking at the reclassification of the conditions, the naming, the management, the care, all of those things, and then, once we have that information, we are then looking at a dissemination plan that could be rolled out kind of across the world and in different ways and embedded into medical education textbooks and things like that. And I think that when you focus on the education side of things, that's how you then lead to that inclusion and, one day maybe, equity of care.

Speaker 3:

I think that these are some really great initiatives overall in the healthcare space. I'd like to narrow it down a little bit to the patient engagement space. You are a professor of patient engagement and a lot of our listeners, our followers, are in the patient engagement space and patient advocates. Do you think that all the same challenges, barriers and even efforts to overcome them that are applicable to the broader healthcare space apply to the world of patient engagement? Would you say that there are inequities within this space? Would you say that that parallel continues, or would you say that we're better off in general as patient engagement professionals?

Speaker 1:

I think that I think I alluded already to the fact that I believe that patient engagement as we know it is progressing because of these efforts. I think one area to note is that people are using the term patient less and less and we talk much more about lived experience, and I think that is acknowledging already a move forward. I think that, ultimately, when you see patient representation in clinical trials and the rare disease drug space, people are largely white, people are largely privileged, people are often men. You do have women, but it's certainly not equitable in terms of representation.

Speaker 1:

And that comes back to privilege, because you have to be privileged already to be able to know that that's even a possibility, to be able to know that you can represent yourself as somebody with lived experience. So often that's a privilege of knowledge and that people aren't told. So of course, there's not fair representation amongst r&d, design and clinical trials and research and pharma and everything else and pharma in itself. I mean, look how white pharmaceutical industry is. It's them largely that are recruiting and enlisting the help of people with lived experience. So, yeah, it doesn't do a good job of representation. I think you know when I go to conferences about patient engagement, it's a very, very white room.

Speaker 2:

And I wonder if, thinking about the reasons why people are privileged, as you said a few times, I think it's because a lot of the characteristics associated with privilege are kind of interlinked and really affect health equity and inclusion and everything. And it's linked with health literacy, right, which isn't just do you understand it, but do you have access to the information? Do you feel confident researching yourself? Do you even know to research yourself? Do you feel comfortable asking your doctor? I know we talked about cultures earlier, but in some cultures it's not socially acceptable to question your doctor. The doctor is at a higher level than you and there are just so many reasons that I feel like health equity, health literacy, privilege are all quite interlinked and a lot of it's to do with almost. Does the person themselves feel like they can advocate for themselves? Do they trust themselves to kind of get involved, ask the questions, understand their own disease, understand what options are available for them, and it's all sort of intricately woven all these characteristics into each other yeah, I totally agree, and that's, I think, the issue.

Speaker 1:

It's it's really tied in big knots to each other and how do you start on picking each one to be able to let the other run freely? So what comes first as well? You know, what do you tackle first? It's very, very difficult and that's why I go back again to it's usually privilege that determines what gets tackled first, who gets helped first, who gets represented best, and I think that therein lies the problem, and you know it's so deep rooted that that's why, in many ways, we're still very much at the beginning of being able to try and tackle this. But I always say that, and I say this about the EDS space, that doesn't mean that we can't acknowledge progression, but, I think, acknowledging that we need to still hold on tight and show patience whilst we navigate those deep rooted knots of entanglement across these issues, yeah, and I think there's two sides to the problem.

Speaker 2:

So you were talking about the pharmaceutical industry earlier and I think even if they are trying to reach those communities that are underrepresented, they can do that, but how do you truly connect with those communities if you don't have any representatives of that community in your company exactly?

Speaker 2:

You know you can say, oh, we're trying, but no one of color will join our trials and it's because you've not got the right people on your side. And then also on the other side and of course I'm not blaming anyone for this, but I think there is, especially in america, a sense of mistrust in those communities about having white companies trying experimental drugs on people of color because of a history of that being something that happened, unfortunately not being good for that community. So there's two sort of sides to it that you need to work on. I think one is like how do we change the societal perceptions of health care and how do we educate people who aren't involved in these processes to get involved to better their own health and the health of their community? And on the other side, how do you actually reach those people in a way that's meaningful, by making sure that you're representing their needs in some way. So yeah, the more we talk about it, the more layers kind of seem to be unfolding.

Speaker 1:

Yeah, exactly, and the harder it is, and often the enormity of it and the vastness of it is what puts people off then tackling it, and that's what's happened for decades and generations and it's why things are as bad as they are now.

Speaker 3:

But this movement in the last few years has said sorry, that's not an excuse and it's going to take time and it's going to be challenging and it's going to take money, but let's try and unpick this yeah, and this reminds me of a previous episode where we were talking to Victor Montori and he advocates careful and kind care and shared decision making, and we were talking similarly about how can you change society to essentially change the way healthcare works, and it seems insurmountable.

Speaker 3:

And he said that he's studied revolutions over the years and essentially, revolution takes decades, but it involves a million mini revolutions in small places that started years before. That might not really make the history books, but are essentially revolutions, what those building blocks are that creates that big revolution at the end. So that's always a hopeful thing that we're starting, and it seems like this big tangle of knots, but we're beginning with, you know, one knot at a time and we're getting somewhere. Yeah, all right. So I think that what you said about progression leads me well into the next question, which is where do you see DEI in healthcare? How do you see it evolving in the next few years, in the next five years?

Speaker 1:

so I think better representation is definitely needed. I think once you get that, that makes everything much easier. But to get better representation you have to have better access to the right communities to get there.

Speaker 1:

Yeah with the right information and the right education, understanding and acknowledging that some people may understand what you mean by patient engagement. For others, they'll be like what does that mean? Or what are you asking of me? What do I need to do? You know?

Speaker 1:

So really plain language, accessible dialogue as well, I think, is essential. Be very intentional with what you need from communities, so you know it's not a broad stroke. We need more people of color, we need more people from the LGBTQ plus community. We need more men. You know we need x for y. I think it's very, very important.

Speaker 1:

Respecting people's time as well and having good compensation if you're talking about patient engagement so it's not tokenistic as well is very important, and all these small shifts will help go back to what we were talking about. I'm doing all of those knots. Getting the right people around the table as well. There's some great experts and leaders out there that are talking about this and thinking about this. Get the right people around the table. Co-creation from the outset, representation as equal stakeholders from the beginning is what's needed. So people with lived experience, whether that's being a person of colour, living with a disease or condition, being somebody from the LGBTQ space, being someone that lives in a lower middle income country. Have that representation around the table from the beginning. Allow those people to help you build the table, not just sit around the table.

Speaker 3:

I love that build a table I think it's essential.

Speaker 1:

I think that's what we need to get there.

Speaker 2:

So that's what I hope to see in the next few years yeah, and I suppose what you're speaking to is making sure that it's true involvement and making sure you're listening to those people and including them, rather than what I think might happen sometimes is having a tokenistic person with the characteristics that you need.

Speaker 1:

Yeah, or you know a group of white men designing a protocol or a plan or whatever it may be, and then inviting the black woman at the end to say, could you just review this and check that we got it right? And ultimately, often the case that person not feeling like they have the freedom or right to be able to correct. So it's like, yeah, sure, you know, there we go, because people are scared and feel threatened by the world that we live in, and so I think that that's where it comes to the time of that. Inclusion to me is what's essential to take it from being tokenism to something that's meaningful.

Speaker 3:

Right. I think that that kind of covers what we were going to ask you, which is about your advice to stakeholders in this space who are looking to be more inclusive and looking to improve health equity. Do you have any specific advice to patients or patient advocates who are hoping to do this better?

Speaker 1:

I think. First, remember you are more than a patient. You are someone that can bring your entire lived experience to the table. The only expertise you need are being who you are. So do not feel that you are less than because you don't have a doctor or professor in front of your name or you don't have a relevant degree. Your expertise is being who you are and that is what is so important, and don't worry about not having the right language or being able to articulate yourself in a way that's seen as academic or intelligent. That's not what's important. So I would say to remember that you're entitled to equal compensation for your time and that expertise. Do not do things for free, because nobody else around that table will be doing things for free. So that's very, very important. And remember that that brings privilege of having a seat around that table and to try, wherever possible, to represent as best you can within that space, because it's a wonderful thing to be able to have a seat around the table. It's your right, but it should never just be taken for granted.

Speaker 2:

I think that's great. Thank you, and I suppose just my one follow-up question to that is if you are representing a community, obviously you've got your expertise and your own lived experience, but how can you ensure that you're also representing the experience of someone else who's maybe a different race, different gender across the world, in a different social class? Is it trying to bring those people to the table too, or is there a way that you can make sure that you understand their experiences or at least acknowledge those?

Speaker 1:

because just thinking that it's unlikely that you're going to get 200 people with every characteristic under the sun at that table with you yeah, and and I think that's really important, because I think that's also what makes the difference of a patient advocate like a professional patient advocate and someone with lived experience sharing their expertise. So 15 years ago I was invited to share my experience of living with EDS and firstly, you know, for EDS there's 14 different types. Within each type there's a vast spectrum. How do I possibly represent anyone else but myself? And I think there's a danger in when one person is asked to represent many if they don't have the expertise in doing that. So that is where patient organizations come in. So if you're bringing in an individual, they should only be asked to talk about their individual experience, unless they have the experience themselves and knowledge to represent more than that, and no one should be made to feel the pressure of doing more than what they know. If you want, you don't need 200 people around the table, you need the patient organisation around the table, and that is not done enough either.

Speaker 1:

There are patient organisations such as the Ellis Daniels Society that can get you to 2,000 people. Don't underestimate the power of patient organisations. They are too often left behind. They are doing the work on the ground so that then one representative from them can sit around the table as well. You know, like I barely talk about my experience anymore of living with the condition, if I was being approached on a clinical trial, I would probably then recommend they recruit someone else from our community to do that. I can sit on the table and bring the voice of our community, because that's what I do day in and day out. That's my expertise. But I wouldn't then expect someone living with classical eds to talk about what it's like to live with vascular eds you know, and it's unlikely that would happen on a clinical trial because it's specifically for your disease.

Speaker 1:

But you know we're talking about political spaces, lobbying, we're talking about broader issues than just clinical trials and research. So I think it's very, very, very important to remember that as well, that you shouldn't be expected to have more expertise than the lived experience that you have gone through, and if people need and want more than that, bring in the patient organizations right and that's because patient organizations, like you say, day in, day out, they're exploring the issues in their whole broader communities.

Speaker 2:

If people aren't using patient organizations as a resource, that's a hugely untapped sort of fountain of knowledge and experience. Not just one patient with their experience but, like you say, hundreds of thousands yeah, absolutely.

Speaker 1:

You know, I was at the world health summit in Berlin two weeks ago and the theme of the conference was building back trust in healthcare.

Speaker 1:

I didn't see one patient organization represented there on hardly any of the panels, wow, and I'm like how are you going to build back trust when you're not working with the people on the ground? It's just so privileged again it was heavily white dominated. They had, you know, some people from other countries in the world, from africa, representing, but really it was just astonishing the lack of lived experience embedded into that conference and I posted about it on linkedin and I called them out and I was like if you're going to build back trust in health care, bring on the patient organizations and lived experience to help you do that, because if you try and do it just from where you are, you will fail right and I see this a lot.

Speaker 3:

Yeah, it's quite a paradox really that a lot of experts sit in a room and talk about patient engagement and talk about making this real, but not necessarily with people with lived experience exactly, exactly.

Speaker 2:

That's the same to me as a room of men saying what's best for women, exactly yeah a room of white people saying what's best for black people.

Speaker 1:

Yes, elitist, there's no inclusion in that.

Speaker 3:

So you won't reach what you're trying, absolutely right and I do think that patient organizations by and large have the diversity and inclusion piece sorted perhaps more than other organizations, and the reason is that their primary filter is that you're a patient and a lot of patient organizations that I know expand beyond geographical boundaries for that reason because, especially in rare diseases, there can only be one organization for that disease in the world, whereas for more common diseases there might be geography specific organizations. But I do think that that is one framework in which I hope and I wonder if you agree, but I think that that's a little better accounted for the diversity and inclusion piece.

Speaker 1:

I think so to an extent, but not as much as it should be. Unfortunately, I get to see the reality of of it and we're not where we need to be right.

Speaker 2:

It's two sides of the coins again, right, what you said, clarenda, about if you're a patient you're in, great, but what if you've not been diagnosed exactly?

Speaker 1:

you know, the average diagnostic odyssey is 10 to 12 years and for an abundance of issues and that's in like western world. I mean most people are completely undiagnosed in other parts of the world. So yeah, well.

Speaker 3:

I think that that pretty much covers everything that we wanted to and we've done really well in terms of covering a lot of ground in the time that we had. Thanks so much, lara. This was very inspiring and, yeah, I love this conversation. It's funny how, you know, we spoke about all the depressing bits and how it feels like so huge, but at the end of it, the conversation I feel left with hope. Yeah, so that's what I hope our listeners will take away as well thank you, such a pleasure yeah, it's been really great and I agree with everything Clorinda said.

Speaker 2:

I think that the stage where this is at maybe in the world is to just keep talking about sort of why this is a problem, why this is a challenge and why it's so important. So I hope that this conversation will really sort of bring more urgency to this issue and make people think a little bit more about how they can meaningfully incorporate diverse representation and whatever they're doing in the healthcare space. So, yeah, thank you so much. Thank you, I appreciate it.

Speaker 3:

So, clorinda, we just had a really great chat with Lara and just for our final section, I wondered if you could share with me what were your key takeaways from that chat so I think it was a difficult topic because it always raises a lot of insecurity that we're not doing enough as an industry, as professionals in this space, or because there is a mountain of work to be done. But I think that it was interesting to learn about the progress being made. You know the fact that people are talking about diversity and inclusion more, that patient diversity in clinical trials is such a big talking point in industry, for example, people with lived experience getting a seat at the table itself means that that is a diverse perspective that is being included more and more in healthcare. So baby steps and a long way to go, but steps in a positive direction, I think.

Speaker 2:

Yes, I totally agree with everything you've just said, and I think the thing to remember is the whole point of equity and diversity and inclusion is not about putting people in a specific box, to say that, you know, women are always a minority.

Speaker 2:

In many cases they are underserved, we could say, but it is really dependent on cultural context, social context, the combination of their characteristics.

Speaker 2:

So it's not just that they're a woman, but what is their race, what is their economic status, where do they live, what are their religious beliefs, what are their personal values?

Speaker 2:

It's about really thinking about lived experience and not just thinking of a person as a patient or a specific profile or box that you put them in, but firstly, understanding that every person is different and, because of that, trying to get insights from a wide variety of people so you can understand what the common needs are of everyone, and just remembering that they're not just patients. You know, health is only one part of their life. Of course, for people like ourselves with a chronic disease, it may be a bigger part of our lives than other people's, but neither of us consider ourselves as patients. Yeah, so it is really important to make sure that you are really truly understanding all the different people in the community that you're advocating for or the community that you're trying to, for example, produce a medicine for and make sure that you understand their lives beyond the clinical context yeah, and I think a good marker for that would be to ask the question am I representing everyone who needs to be represented as?

Speaker 3:

as opposed to asking, am I representing women or am I representing black people? Right, because, like you said, you might try to accommodate these specific groups, but you might still be exclusionary just by that fact, by the fact that you're not thinking beyond those groups and those narrow definitions.

Speaker 2:

And it's just that including all of those people and making sure there is diverse representation will lead to better awareness in those underrepresented communities. It may lead to better access to care. It may lead to more innovations that are relevant for people in those communities, which will then close the equity gap. So health equity can impact diversity and inclusion, and diversity and inclusion can lead to better health equity.

Speaker 2:

So, the two are really interlinked, and especially when you're trying to involve patients in decisions about healthcare, that's where it's really important to make sure that you are being as representative as possible.

Speaker 3:

Yeah, and I think that the definition of equality versus equity is a really important one, especially in the context of health, because it's about giving people what they need for where they are, as opposed to giving everyone the same thing, and I think if more stakeholders in the healthcare space are thinking like that, then we can be a more inclusive environment, absolutely. Thank you so much for listening. This has been Not Just Patience with our guest Professor Lara Bloom and your hosts, caitlin Rich and Clarenda Serejo. Thank you.

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Caitlin Rich

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Clarinda Cerejo

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