Not Just Patients

Raising Public Awareness through Multi-Channel Advocacy | Trishna Bharadia

• Caitlin and Clarinda • Episode 19

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Patient advocate and engagement consultant Trishna Bharadia joins Caitlin and Clarinda to explore how advocacy can be supercharged by tapping into diverse channels, from niche community networks to public mass-media platforms that reach millions. 

Trishna works with multiple stakeholders to embed the patient voice into medicines development and healthcare. She's a visiting lecturer on patient engagement at the Centre for Pharmaceutical Medicine Research at King's College London and Co-Chair of the Working with Patients and Communities Forum at the Faculty of Pharmaceutical Medicine (FPM).

Trishna is also a patron and ambassador for several health and disability-related organisations, including the International Society of Medical Publications Professionals (ISMPP) and the Patient Information Forum. Her many awards include a Points of Light from the UK Prime Minister office for her work with patient communities and a Pharma Voice 100 honour for outstanding contributions to the life sciences. 

On this episode, Trishna shares fascinating stories of her multifaceted advocacy, from Strictly Come Dancing/Dancing with the Stars to radio, journals, social media, and getting her parents involved. She also offers excellent advice for getting started in advocacy, navigating criticism, and owning your story.

Chapters

  • 00:00:00 - Introductions
  • 00:01:46 - Trishna's journey into advocacy
  • 00:08:02 - Importance of raising awareness
  • 00:13:43 - Exploring different advocacy channels
  • 00:21:05 - Strictly Come Dancing experience
  • 00:30:05 - Normalising disability/chronic illness in mass media
  • 00:33:36 - Caregiver/family involvement in advocacy
  • 00:38:59 - Countering cultural and societal stigma
  • 00:43:42 - Advice for other patient advocates
  • 00:51:10 - Reflections with Caitlin and Clarinda

Resources and Abbreviations

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Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com

Trishna:

know, my mom and dad were being stopped in the supermarket because people recognized them from the show. And they were saying, oh, you know, my so-and-so has MS or a different chronic illness. And it's really helped to open up conversations.

Caitlin:

Hi, I'm Caitlin

Clarinda:

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

Caitlin:

a podcast where we break barriers to meaningful patient involvement in healthcare. Thank you for tuning in today. Our guest on this episode is Trishna Bharadia and she's here to talk to us about raising public awareness through patient advocacy. Trishna is a multi-award winning advocate and patient engagement professional, working with multiple stakeholders to embed the patient voice into medicines development and healthcare. She's a visiting lecturer on patient engagement at the Centre for Pharmaceutical Medicine Research at King's College London. Trishna is also a patron and ambassador for several health and disability-related organisations, including the International Society of Medical Publications Professionals and the Patient Information Forum. She's also the co-chair of the Faculty of Pharmaceutical Medicine's Working with Patients and Communities Forum. Her many awards include a Points of Light from the UK Prime Minister office for her work with patient communities. She is a Pharma Voice 100 honoree for outstanding contribution to the life sciences and she has been an honorary member of FPM since 2021. And that's the shortened version of Trishna's bio. So really delighted to have you Trishna, thanks so much for joining us today.

Trishna:

Thanks for having me.

Caitlin:

So just to start with, we'd love to hear a little bit about your story and your journey into patient advocacy.

Trishna:

My journey into patient advocacy started very much like many people's journey into patient advocacy in that it wasn't meant to happen so I was diagnosed with multiple sclerosis in 2008 so I was age 28 at the time and up until that point had been relatively healthy all my life and the diagnosis experience was suboptimal let's just say that but I was basically given this life-changing diagnosis and then sent away with no real signposting or support as to where to go to for information, what kinds of services were available to help. And my family and I really felt like we'd been kind of thrown into this black hole and we were having to sort of navigate, not just finding out as much as we could about the condition, but also things like treatment options and support services, and also didn't really know where to go to for trusted information as well. And this was at a time when you didn't just Google. My mom, for instance, was actually physically picking the phone up and ringing up organizations and asking for information to be sent to the house. It was very difficult. And then being of South Asian heritage and being diagnosed with a condition that has traditionally been seen as essentially a Caucasian disease, also brought with it challenges. So challenges around awareness, people within the Asian community just really didn't know what MS was. And there was also a lot of stigma and prejudice attached to being diagnosed with a chronic illness, especially one that could then lead to disability. And so it was those two things that really prompted me into getting involved in advocacy because I felt that I wanted to improve the situation because I thought if I'm having this experience, other people are having this experience and that's not good. And I'm one of those people that if I see something which I feel needs to be improved, then I'll try and do something about it. And so I was actually at an MS research day. This was about a year into my diagnosis and I happened to be sat at lunchtime next to somebody who worked for the MS Society and they at that time their role was to essentially coordinate and be the liaison for the MS Society's national groups and she mentioned that they were holding a focus group for Asian MS which is the MS Society's national support group that aims to provide culturally sensitive support for people of South Asian heritage who are affected by MS. And she said, do you want to come along? And so that's really what started it all. And I went to that focus group, got involved with Asian MS. From there, I then got involved with other things at a national level that the MS Society was doing, which was also outside of Asian MS. Then that led on to advocacy with other MS organizations. I then started to get asked to speak at conferences. I was speaking as an expert patient at preceptorships for pharmaceutical companies and it was very much one thing just led to another and I'm now where I'm at you know at present where I've now got my own patient engagement consultancy company and the advocacy has actually led me into completely changing my career because I have been working in translation and And I'm now doing patient engagement and advocacy full time and feel like it sounds really corny, but this is what I was meant to do in life. I absolutely love what I do. So whilst, yes, I'm now also doing sort of paid consultancy, I'm also still doing a huge amount of voluntary work for patient organizations, not just within MS, but across disease areas and also at disease- agnostic organizations.

Clarinda:

Thank you, Trishna, for sharing that. You might say it's easy to say this because it always starts from an unfortunate situation, a diagnosis, but I can say that the serendipity of you sitting next to someone who was in charge of that Asian group and then the series of serendipitous instances that followed, I think that so many people have benefited from that. Me personally, I consider you my mentor, Trishna, and I've gain so much from the insights that you share and I just think that it's amazing, everything that you've built from that place.

Trishna:

You mentioned serendipitous moments and I think that those can't be underrated when you're doing something like patient advocacy because you know often I was right place at the right time but it was also like I said taking advantage of the opportunities that were being presented but also I was very conscious around along the way I met some just fantastic people in different areas who really I felt helped me build my confidence to be able to share my story in a room full of healthcare professionals.

Caitlin:

Absolutely agree I think it is a really small and supportive world and everyone's got a different and diverse background but a similar kind of story and have been through a similar thing and because of that I think everyone's really really helpful and supportive of each other.

Clarinda:

So coming to what we want to talk about today, I'll admit that Caitlin and I had some trouble narrowing it down with you because you are a treasure trove and you can literally talk about anything pretty much that we cover on this entire podcast, which is a very wide spectrum. But we are going to be talking a lot about raising public awareness through advocacy. So beyond the traditional channels of advocacy and maybe we can just start by talking about why raising awareness is such an important part of patient advocacy.

Trishna:

So I think there's two things. One is around the disease awareness, but I think there's also something around raising awareness about patient advocacy itself. Often when I say to people, I'm involved in patient advocacy or I'm a patient advocate, they don't actually know what that is. And also depending on which country you're in it can mean different things as well so I think we need to raise awareness about the very fact that patient advocacy exists because patient advocacy as a movement it can be really influential you know there's a huge amount of value in what patient advocacy does and people aren't aware of it so I think raising awareness is basically it's about starting those conversations and ensuring that as a patient advocacy movement we have the support where we need it, that we are getting into the you know the influential circles so that we're able to change things like health policy, access to medications, we're able to influence the design of clinical trials, to what research questions are actually being researched. Everybody will be a patient and or a caregiver at some point. Not everybody will necessarily want to go into patient advocacy but every single person who is diagnosed with something or is caring for somebody who has a health condition will have benefited at some point from something that a patient advocate or a patient organization will have done. So I think that's really where that whole raising awareness about the patient advocacy movement is incredibly important.

Caitlin:

Yeah, absolutely. And it is an interesting angle because I'm sure Clarinda and I have had the same situation where you say you're into patient engagement or involvement or advocacy and those terms even have different meanings to different people as well and also I think you know another point is I guess disease awareness where you're trying to raise awareness particularly maybe of rare diseases or maybe diseases that people know about but maybe have some sort of misunderstanding as well and you want to kind of reduce the stigma or help people understand a bit better what it's really like to live with something or care for someone who's living with something because what you get from from a textbook would be really different, for example, from what it really is like to live with something.

Trishna:

No, absolutely. And it becomes particularly important for the healthcare professionals because they're really on the front line when it comes to treating and caring for people who are living with a condition. I mean, we've seen just the impact that has happened in terms of patient advocates of colour advocating for more representation, for instance, in medical textbooks. Ii actually bring this up a number of times when I'm reviewing informed consent forms for clinical trials where they talk about you know a side effect might be a rash and it says look out for red skin. Well if you're a person of color actually the rash may not be red. And so having that representation that's now starting to filter through and you are getting more representative images in medical textbooks and you are getting more what I would say are diverse and representative descriptions of things. Just that one thing, that can make a world of difference to a healthcare professional - when they went to medical school, was told to look out for this, this, and this, but it was all actually just aimed at people who have white skin. And so you can see the impact that patient advocacy can have and how we need to celebrate that. I know that there's talk of having like a patient engagement day. And I think, you know, things like that hopefully really raise awareness about the achievements and the impact that patient advocacy has had globally, which many people just aren't aware of.

Clarinda:

Right. I agree. And I was just looking at a LinkedIn post of a fellow patient advocate who's India-based who asked whose responsibility is patient education? And it's such an interesting question because whose is it? I mean, doctors don't have the time. Governments will only do it for something like smoking cessation. And it's just so superficial, right? It's not even about the associated conditions or the health implications. It's just like blanket statements, as it were. And pharma, the education can be quite limited, if at all, to a particular drug. And advocacy groups kind of seem to be the only channel where patient education lies at the moment and they don't get much credit at all for the kind of work that they do. Very often people don't even know about them or the power that they have and they're not really tapping into that source. And they're struggling to get funds, and they're struggling to leverage the resources that they have, and yeah there's so much untapped potential there I think. So coming back to you and your journey Trishna, I think that you've been involved in many many different channels of awareness raising again, very broad spectrum. You write articles for journals and you talk to researchers in their language in that sense. And then you also talk to patient advocates as part of communities like ISPEP or the International Society for Patient Engagement Professionals. And then you do some really cool mass media things like Dancing with the Stars is something, I mean, I don't know it very well being in India, but I'd love to understand the breadth of your experience with some of these different forms of advocacy.

Trishna:

So again, this was an area which really spoke to me because I felt like the basis, the whole foundation of what I wanted to do started from getting people to better understand about MS what it was like to live with it, what kind of impact it can have on someone's life. Because I feel like most people, they do want to support, but if they're not aware of the kind of support and help that might be useful, then how are they going to be able to offer it? Whether that's individuals or whether it's organizations. So that was really the foundation. And when I started volunteering for Asian MS, one of the things that we really felt was important was raising awareness about MS within the Asian community and that's what I would say started to build my confidence when it came to public speaking and from there I was then asked to do some things with the MS Society give some presentations and talks. I was then asked to do some campaigns, go on the radio, and so it was very much it was about building my confidence to do more and more things. I would say again there was no plan. It's just I basically was looking for the right channels to target the audiences that I felt needed to be reached and always did things which I felt comfortable with as well because there's a lot of misinformation out there and I wanted to make sure that I was able to provide trusted information as well as being authentic to my own personal experience because we have to remember when people are sharing their experiences for instance on social media they are talking about their own personal experiences but then also when you've built up a community there comes with that is that weight of responsibility because then I wanted to make sure I was sharing information that was also evidence-based that people might find helpful to be able to make decisions about their own health care. So I was very much about signposting to organizations. And whenever I've done, for instance, interviews on the radio or in the press, you know, I always make sure I try and say, you know, the MS Society is out there or the Patient Information Forum is out there, all the organizations where I know that you can get trusted information. And then going back to the whole, the targeted audiences. So you're talking about, okay, you've got the patient communities, you've got the public. That's really where the mass media comes in. But they've also got healthcare professionals, industry professionals. And that's where the journal articles have come in. And again, I'm not going to say I set out to say, okay, you know what? I want to go and publish in a journal. That didn't happen. I happened to be asked to be a co-author on a paper. And again, one thing led to another but in doing that I realized the power that patient authorship can have in terms of influencing the way in which a journal research paper is written so that the patient voice comes through and that's where the healthcare professionals and industry professionals are going

Clarinda:

yeah.

Trishna:

And so having this variety of different media and channels I think is really important important. And also it's about the evolution as well. I mean, back when I started doing patient advocacy, you know, you're talking over 15 years now, don't know if podcasts even existed. As the channels have evolved, as a patient advocate, you have to evolve with it to a certain extent. I still, and I have to admit this, so I'm asked to be a guest on a lot of podcasts. I don't actually listen to podcasts as routine.

Caitlin:

We're not offended.

Trishna:

It's just not one of my things. But just because I'm not a regular listener of podcasts, that doesn't mean that I then said, well, that's not a channel I'm going to explore because I recognize the importance of podcasts as a channel for raising awareness. And sometimes it means you have to step out of your comfort zone. You know, if somebody had told me back when I was diagnosed that I'd be on television in front of literally millions of people, I wouldn't have believed them. But it's actually something that I've grown to really enjoy doing. And yes, it's meant that I've stepped out of my comfort zone. But that's also been, I think, everything in certain ways about patient advocacy.

Caitlin:

That's all really interesting. Thank you. And there's so many different opportunities available. And I think maybe more traditionally, how health information was portrayed was very sort of targeted channels so it would be I'm aiming for a particular journal that speaks to the particular type of doctor or specialist that I want to speak to or even things like on a patient organization website, that's fantastic but you have to be looking for it the targeted stuff is really important for people who know what they're looking for and really want to be able to easily find information whereas some of the more mass media pieces there's doing things on social media there's tv there's radio where at you're then reaching a much broader audience who aren't looking to learn about, for example, MS or patient advocacy. They're kind of absorbing it through their daily ritual of being on their phone or listening to the radio and everything. So two very different but very important approaches. And I think touching on those more mass media pieces are things where you can actually start sort of helping people who maybe don't know they need to be helped or teaching people who don't know what they don't know. reducing stigmas or helping more people to understand a certain disease maybe even coming across someone who thinks hang on I have those symptoms or those experiences maybe this applies to me reaching people in government who might have an impact on policy and everything so those two different angles are both very important and just before we move on too far I have to bring up Strictly Come Dancing because well in the UK it's such a huge show and everything and I'm incredibly jealous that you got to have that opportunity and I wonder if Trish you could speak a little about that just to indulge me but also it'd be really cool to know firstly about that experience but secondly about the reception that you got from it and if you know how much that impacted the millions and millions of people who ended up watching that show

Trishna:

it was oh gosh the most incredible experience of my life it was also probably one of if not actually the toughest so the people who don't know strictly come dancing or dancing with the stars as it's being franchised out across the world so you get a whole bunch of celebrities they're paired with professional latin and ballroom dancers and then they have to basically learn how to dance and every week the public vote for who their favorite is and it's just wonderful particularly if you love dancing but you also love seeing the evolution of somebody learning something new. So back in 2014 they announced on the main show that for the first time ever they were going to open up the Strictly Come Dancing ballroom to non-celebrities and they were looking for people who were huge fans of the show and who essentially deserved to have the whole Strictly Come Dancing experience because they They'd overcome adversity. They'd done lots to help other people. They'd done charity work. What they called deserving members of the ordinary public who were doing extraordinary things. So myself and my younger sister, we're huge fans of the show. And she saw that call out and she thought, oh my goodness, Trish would absolutely love to do this. So she nominated me. They had over 11,000 nominations. Yes, and they chose just six people to take part and I was one of those six people. That's so cool. And then what followed was four months of filming, dance training, sometimes up to 20 hours a week. I was still working full time and I was also trying to manage my MS as well. And I think doing the show was a real testament to what can be achieved when you have the right support around you because it was the hardest thing that I've done physically, mentally and emotionally. I mean, there was one day and I remember I was picked up at something like six o'clock in the morning, did a full day of filming and dance training and other things and I didn't get to bed until it was about two or three o'clock in the morning. Oh

Caitlin:

my gosh.

Trishna:

So it was really tough but I had a lot of support and understanding So my family, it didn't matter what time I had to get up or what time I was getting home, my mum was there and she was like, okay, Trishna, what do you need? What can I help you with? Let me get this, this and this so you're not worrying about it. And it's little things. But anyone who lives with a chronic illness will know that the little things that build up, that sap your energy. And I needed all my energy. for basically being able to get the most out of this experience so my family was there to support me but then you also had BBC production crew wherever we were filming they tried to make sure that there was either a separate room or a quiet space where I could go in order to have a nap if I needed to or just be able to decompress we adjusted some of the filming days because sometimes it was relentless. The professional dancers and the other participants who had been chosen very much became my family support when I was out on location or at the studios. But, you know, there were times when, for instance, we had to make adjustments to the routine because I was dancing a jive, which is one of the fastest paced dances that you have on Strictly. And, you know, putting certain moves towards the end of the dance actually didn't work because by that time I was so tired I just I wasn't able to do it and so it was the coming together of all that support that really made it the experience that it was and then you know a lot of the things that I learned during that time had then also helped me in terms of advocacy so for instance I did a lot of media work during Strictly so you know I was learning things as I went along but then it also it really opened up those conversations you know my mom and dad were being stopped in the supermarket because people recognized them from the show and they were saying oh you know my so-and-so has MS or a different chronic illness and it's really helped to open up conversations I was being contacted on social media from people saying it's really helped us to have conversations with our family or I feel like I've been seen because I'd never seen anybody else on television with MS before, and I saw you on Strictly. So I think all of that really helps. Don't get me wrong, it was also difficult in certain ways because there was also a very, very small percentage of the MS community. It came from a place of concern and worry, but there were people who said, well, essentially you've got no right to go on television as somebody with MS and strictly come dancing because I'm in a wheelchair and I can't do that. I was always very clear that I was telling my story and that every individual with MS or any illness has their own individual experience and everybody has the right to share it. And when I was talking about MS because we did all the filming for the backstory and things, I made sure that there was representation there. And so I talked about the spectrum of what MS can be and the fact that I'm talking from my own personal experience. But I also used it as an opportunity to raise awareness about inclusive dance, because when people said to me, oh, well, I'm a wheelchair user, so I can't dance, I would send them links to inclusive dance organizations and say, well, actually dance is probably the most inclusive physical activity you can have because you can do it in a group where you have a whole range of different abilities and everyone can just do what they're able to. And so I guess I also used it as an opportunity to do that. But it was tough because that did upset me sometimes. because I felt like oh I don't have the support of everyone like are people going to go away thinking that I'm somebody who's typical that has MS when actually there is no typical person who has MS because everybody has a different experience like I said again it was a learning experience and the show aired in 2015 so it's 10 years ago now and the things that I learned while I was doing the show I'm still employing now

Caitlin:

yeah it's funny because I've seen Strictly, hearing you speak about it because the celebrities all talk about firstly how grueling and difficult it is how life-changing how amazing and everything it is so obviously to experience that you and the other people that had that experience as well and you know by the sounds of it from your parents being recognized in the street from people reaching out to you it kind of shows how wide that reach was, much wider than if you spoke at an MS Society conference, for example. And to get the response that you did, mostly good, obviously, that's amazing. But I guess you just have to prepare yourself that the wider the net you go, the more likely it is that you might get some negative feedback, I suppose, from people who feel slighted or don't necessarily agree with what you've put out there. And I guess it's just understanding that that's always going to happen the wider the pool that you have. And it sounds like, you know, what you did was all the right things in terms of sharing your own experience. And we have spoken about this before in a few other episodes with advocates who feel that kind of weight of responsibility representing a community and maybe that survivor skill if you're a bit healthier than other people. But like you say, I think that speaks to what a lot of people in patient advocacy or engagement talk about, which is you have to treat each person as an individual. because health is not something that's binary

Clarinda:

yeah

Caitlin:

and people experience it in different ways so I think it would be a shame to say no one could go on Strictly Come Dancing and share their experience because it's not the experience of every single person with MS I think it is absolutely fantastic that you had that opportunity and I do think that 10 years on from that there's a lot more of that happening not maybe necessarily on television but there's other media that's way far-reaching now like social media there are some influencers who talk about living with their condition and I've seen them get similar feedback as well but if it's making those conversations happen and those people who don't feel like they're represented are then sharing their experiences that's all helpful as well

Trishna:

yeah absolutely and I also think that now at least in the UK I've seen it that over the last around 10 years or so there's been a lot more move to having that representation of chronic illness and disability in the mass media you know now you regularly get people with disabilities taking part in for instance Strictly Come Dancing and I think that that is really helping to normalize disability and chronic illness to the extent that then it doesn't matter what condition somebody might be diagnosed with, they will feel seen. I don't think that that can be underestimated, just that power of the mass media. I mean, don't get me wrong. I think you still need those more niche channels. And I think also social media has its place as well. But it's about combining the different channels so that you get the strongest messages out there that you can. And also you have to tailor your content as well. So for instance, when I talk about MS in the mass media, so I'm giving a radio interview, for instance, it's very different to the way that I talk about it if I'm giving a talk in a room full of healthcare professionals and scientists, for instance. So as patient advocates, we have to be conscious about how we take our content when there is so many different channels out there that you can raise awareness through to make sure that it is being understood in a way that relies on what I call the foundations of being a patient advocate, which is really trust, authenticity and relatability.

Clarinda:

Yeah. So moving on, Trishna, I think you mentioned the support of your family a few times and you also mentioned radio interviews and I did come across a post of yours recently where you spoke about having your dad join you on a radio interview. I think that this has happened a few times and I find it completely fascinating how you've involved your parents in your advocacy efforts and how they've come on board with some of these things. I would love to learn more about how that happened and how that has had an impact on your own efforts and the response that that has had

Trishna:

so some of this has been intentional some of it accidental some of it out of necessity so the intentional side of things so when you're living with chronic illness it doesn't just affect you it affects the people around you and so we wanted people to be aware of how it was affecting the family not just me so how is it affecting affected my relationship that I have with my parents, with my sisters? How has it affected the life goals and the life path of my parents? So they actually have three daughters, all of whom live with chronic illness. So I have MS, my twin sister has MS, and my younger sister lives with inflammatory bowel disease. And they were very conscious that they wanted to make sure that if any of us had to stop working because of our conditions that we were essentially going to be okay and so they worked for much longer than they had been planning to so they retired very late and that's just one aspect so that was the intentional side of things we wanted people to understand the impact that chronic illness can have the people around you and that just huge amount of support that comes from essentially unpaid caregivers and I mean to be honest definitely in the uk it will be the same all over the world unpaid caregivers really prop up the entire health care system because of just the sheer amount of support that they give and so there was that there was also the accidental and that was very much around so my mom and dad would often accompany me when i was doing events speaking at conference contributing to advisory boards. And this was a time when the vast majority of things were being done in person. So I needed somebody to accompany me. And they would often, you know, one or the other of them would often be sat in the room and they'd be like, I could contribute to this. You know, the things that she's being asked, I have an opinion on this. I have experiences that I could share. And so we started to push for more caregiver perspectives to be incorporated into conferences, into the patient engagement work that pharma companies were doing, into the learnings that healthcare professionals were going through. So there was that. And then there was also necessity. So the post that you refer to, Clarinda, I was asked to do an interview on a Punjabi speaking radio station. And as someone who was born and brought up in the UK to a Punjabi father and a Gujarati mother we spoke English at home and so my understanding of Punjabi is okay my speaking is absolutely terrible and so you know I said to them well can I bring my dad along I'll speak in English he can speak in Punjabi it worked really well so I think it's really important for people to understand the impact that chronic illness has on families. And a way to do that is to, yeah, get your family involved in your advocacy efforts. And they are just as well known, for instance, within the MS Society as I am. It was funny, actually, myself and my dad had gone to the annual Stop MS lecture. This was a couple of months ago. And we walked in and there was an MS Society you know you get these roll-up banners and my mum and dad were on it oh wow a huge picture of them which was taken at one of the MS walks and yeah it was just like mum and dad are famous now too and to be perfectly honest I wouldn't have been able to do all the things that I've done had it not been for my mum and dad's support you know people often say to me oh Trish you know you're managing not just my MS but I live with several chronic conditions and you do so much how is it possible and I just it's because I have the support of my family and so again that needs to be conveyed that it's not just me it's very much a team effort

Clarinda:

I think that's incredibly powerful because one of the things you said early on you spoke about the stigma associated with a chronic condition and speaking as an Indian from the India perspective you know I work with a group of patients in India India with NMO and similar conditions I know that stigma is one of the biggest challenges right to having a chronic condition there is this huge sense of who's going to marry you and don't tell anybody about this let's keep it hush hush and all of those things and I think that culturally having someone from the older generation your parents just being so proud to be associated with it to be out there and speaking about it along with you that's That just sends such a strong message to counter stigma. I think that that has immense power in so many ways, apart from the support that they extend to you, of course, and the advocacy in itself. I think that from the cultural perspective, it's phenomenal.

Trishna:

And I think it also encourages others from backgrounds where this stigma and discrimination exists, encourages more people to be open and to be public. So even the experiences that I've had and all the sort of patient advocacy that I've done actually has encouraged my dad to get involved in patient advocacy in his own right. Because back in 2021, he was diagnosed with prostate cancer. And generally men don't tend to talk about their health anyway. Asian men even less so. And when it's to do with something like your prostate, literally you've got no hope. And because my dad had already seen the powerful impact that advocacy can have. Once he'd been through his treatment and everything, he said, okay, now what can I do? Because he said, you know, I've never heard of any other Asian person who has prostate cancer. They're going to be out there. Of course they are. Are they basically just not talking about it? And so, you know, he's now a peer support volunteer for Prostate Cancer UK. And often people from a South Asian background, they will ring up and they say, can I speak to somebody else who is South Asian? And my dad will always be very happy to do that because repeatedly people will say, oh, I don't know any other South Asians. And it's not because they're not out there. It's because they're not talking about it. And my dad also sort of seeing just how open I I've been around symptoms which can often be very embarrassing. So for instance, with my MS, I have bladder issues. So I'm very open about talking about bladder issues. My younger sister, like I said, lives with inflammatory bowel disease. So anything to do with the bowels, we just were very open about. And so I think that also helped him. And when he was diagnosed with his prostate cancer, he was very open talking about urinary incontinence. And post-surgery, he had to wear pads, which again, for men, that's not something people share. But dad went on radio and spoke about the fact that he had to wear pads after he had his surgery. And that is so powerful because people don't often talk about that. And, you know, he said to me, he said, you know, it's great that as a pair, I'm learning from my child

Clarinda:

that's amazing

Trishna:

from child I mean a fully grown adult

Clarinda:

yeah

Trishna:

but you know it's something that he's learned and which he's now going on to do which I'm incredibly proud of him for because he's taken that step and he's in his mid 70s so it's never too late

Caitlin:

yeah wow fantastic that's such a heartwarming story and to be honest what you're talking about with stigma and everything I feel like it would almost garner people's attention a bit more because it's almost something that you wouldn't expect someone to be saying on national radio or TV or anything. So it almost works better because it makes people pay more attention because they're like, oh, I wouldn't have said that. And, you know, breaking down that stigma as you go and also helping to raise awareness. That's really, really cool. I'm quite conscious of time, Trishna. I'm sure we could talk to you for absolutely hours more on these topics and many more. But just for this final section, we usually ask a few questions and about your advice for various stakeholders. So firstly, what would your general advice be for people who are just starting out in patient advocacy?

Trishna:

I'm often asked by patient advocates who are just starting out and they say, well, how do we get to the point where you're at? And, you know, I feel a bit like, what's the word? So imposter syndrome, because I have to say to them, there was no plan. It just happened organically. And I basically was just saying yes to things that interested me. So again, I say to people who are getting involved in patient advocacy is yes, grab the opportunities if they're presented to you, but also be aware of the people who are trying to help you because the patient engagement world and patient advocacy world is actually very, very supportive and people do want to help others. And just be aware that it's not only about the what I would say the support when it comes to the opportunities but it's also about the emotional support because when you're doing patient advocacy it can become emotional and it can mentally sometimes be quite a weight because there's a what I talk about the responsibility of advocacy and to be able to share that with others who get it I think is incredibly important so building that support network around you and the people who understand what it's like to do patient advocacy is also really important in terms of being able to progress whatever avenue of advocacy you want to go down

Caitlin:

yeah finding mentors finding friends finding peers is absolutely the way to go about it would you have any advice for sort of a patient advocate or organization who wants to approach these sort of more mass media outlets to tell their story how would they go about that kind of thing So

Trishna:

it very much obviously depends on where you're based. So from a UK perspective, there are resources and there are initiatives out there that provide media awareness training to charities, to patient advocates, patient groups themselves. So some of the larger charities can also provide support. So for instance, at Asian MS, we hosted a webinar in collaboration with with a few patient groups who are targeted towards the black MS community. And we did it in conjunction with the MS Society. And in this webinar, we were basically talking about how to share your story in the media. And we had a couple of people from the MS Society who work in the press and PR team. And they were talking about things like how to put together your patient story and your experience, building up confidence, the fact that you don't have to do every type of media, but you can be anonymous if you like, having a hook to your story. So for instance, if you're going to approach media outlets, then often it can help to link it to something else. So for instance, if you know that a new piece of research is being released, then often they want case studies in order to be able to... humanize that piece of research. Awareness days. So within the different disease areas, you have different international awareness days and also awareness weeks or awareness months. So linking into that can also help. So there's a variety of different ways. I think if you start local, that can also help. And that can help you to also to build the confidence because you know that it's going to be a smaller audience and then just putting yourself out there sometimes I'm approached because people have seen me in social media so you know building up platform on social media can then help to lead to other things I think we're in an era now when in many ways it's easier because you've got the tools and resources out there and also the platforms to be able to even just you know build your own community but also in certain ways it's slightly harder because you also have to be able to cut through the noise so having a niche can also help yeah so there's one disability advocate that I know who has very much concentrated on sexuality and disability and that's her thing you know for myself being of South Asian heritage has been a very, very important part of my advocacy. And that is very prominent part of all of the things that I do. So also having a niche that can help as well. So there's lots of different ways that you can go about it. What I would say though, is if you're comfortable with it, grab the opportunities, take the time to build your confidence. If you're not confident in the first place, you know, doing these things and just remember that this is your story to tell and you're the expert in that story so you can tell it in the way that you want to and in the way that you're comfortable don't let anybody tell you that it should be told in a certain way because at the end of the day you have to be able to own your story because that's what will retain that authenticity and that relatability which will then make you trusted by the patient community and also the public as well.

Clarinda:

That's perfect and that's really something for our listeners to take away.

Caitlin:

It's been really fantastic thank you and as we said I'm sure we could have talked to you about a variety of things but you're the only person I know who's been on Strictly Come Dancing so that had to be the key topic but I think this one in particular you know a lot of advocates find it easy to get a speaking position at a conference or on a webinar or in a advisory board easy is probably the wrong word but there are sort of set channels for that whereas it is difficult to go to that next level and sort of make yourself appealing for that mass media piece where obviously they're not just looking in the patient advocacy space they're looking at the whole world so it's been really interesting to sort of hear your stories and get your advice on that and i'm sure a lot of people find it interesting i think we are ahead in the uk as you said and that is happening a lot more all the reality tv shows appear to always have someone with chronic illness on them but Clarinda in India I suppose that's not really the case so much

Clarinda:

yeah yeah we still have a long way to go but we're getting somewhere small baby steps thank you so much this has been amazing and it's always always a pleasure to talk to you every time I talk to you I learn so much

Trishna:

oh thank you no thank you for having me

Clarinda:

so Caitlin I got so much out of that conversation and I was wondering if we could talk a little a bit about some of our top takeaways?

Caitlin:

Yeah so I think firstly we covered an awful lot in this conversation with Trishna and she has so much experience in patient advocacy using all kinds of different channels so I think on this podcast and maybe a lot of people think when they're thinking about patient advocacy they're thinking about using patient organizations or going to speak at conferences, publications, speaking to doctors maybe and it's all very sort of targeted and aimed at specific stakeholders who are already in the healthcare system. But what we touched on with Trishna today is using more kind of traditional channels of communication and marketing to reach broader audiences through mass media. So we're talking TV, we're talking radio, we're talking social media. And those kind of channels means that you have a broader reach, which is really great because you can reach people and educate them about diseases or topics that they might not even know about and that's sometimes really good because not everyone is necessarily searching for this themselves so if someone isn't already diagnosed or they aren't aware of specific channels or you're trying to reach more people to raise awareness in the general public that's what these channels can be really beneficial for there are some cons that come with these channels as well so you're speaking to a lot of people but it might not hit the right kind of people you aiming at so you really have to think about what messages you're delivering and whether it's appropriate for a sort of wider more general audience so things like disease awareness education around what it's like to live with a disease or even just talking about what you do as an advocacy group can be really good for the public likewise if you're trying to kind of make change at a political level that kind of mass media can help reach politicians who maybe aren't specifically working in your disease area but there are some drawbacks as well in terms of you know the wider the net you cast the more attention you'll get and hopefully that's positive but then occasionally you might get some people who are negative and disagree with what you're saying or doing as well and that's where Trish had some really good insights about sort of making sure that as a representative of a community on a much broader scale you have to make sure that what you're saying resonates with the community but also saying that you are just one person sharing your individual experience and that actually the community experience does vary so it won't always be necessarily reflective of what everyone's going through and I guess the last thing is just that it is a lot harder to access those channels so if you're trying to get published or at a conference that's specifically about your rare disease you're only sort of fighting for that spot with other people within that disease area or particular area of expertise whereas if we're talking about radio or national television or something then actually you're completing with news from all over the world not even just in your disease area not even just in health everything that's going on so it's a lot harder to get access to those channels but Trishna had some really great advice as well on how you can get more involved in that kind of thing

Clarinda:

yeah it was really interesting to learn all her insights and hear her own story actually in terms of how she's evolved as a patient advocate I think a lot of what she said about her early years and her journey resonates with me and is very similar to what what I found for myself as well getting started in this whole advocacy space which is staying open to serendipity saying yes to everything that comes my way you know even for me it was not necessarily necessarily having a plan per se I don't think that there is a stepwise journey or a career ladder in patient advocacy it is very much following your passion doing stuff that you like grabbing those opportunities and one thing that I found really helpful is looking for mentors Trishna happens to be someone I call a mentor but I think and she also spoke about this that there are people willing to support and offer advice and the value of that cannot be underrated I've personally benefited from a lot of people in this community who have been more than willing to you know share their own journey and their own experience and point me in the direction of more advice or connections or opportunities and I think just not being abashed about asking for for advice or asking for help is definitely a great idea at the start of this journey because it's just been fascinating to see how she's taken that from where she where it was 15 years ago from her diagnosis to everything that she's doing now and to imagine that that's possible for any patient advocate starting out is really really an optimistic thing

Caitlin:

yeah absolutely and I think in taking those opportunities you build your network you get to meet more people who might become your mentors or might have another opportunity build a profile for yourself for someone who can get involved in these activities and I think one of the other things she said was you know start local with those smaller maybe more accessible channels and stories and from there you'll get more and more exposure more access to those opportunities as they grow so it's about really building that profile for yourself over time and the opportunities will go come but and I'm saying this Clarinda for you as well one of the things you mentioned and we've heard a lot before from advocates that we've spoken to and we've spoken about it ourselves but say yes to the right opportunities and protect your health first is always that really careful thing that you have to balance so saying yes to things you enjoy and things that won't be detrimental to your health as well as a disclaimer

Clarinda:

that's a great pointer thank you so much for listening today This has been Not Just Patients with our guest Trishna Bharadia and your hosts Caitlin Rich and Clarinda Cerejo.

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Caitlin Rich

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Clarinda Cerejo

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