Jack O’Brien speaks with Dr. Maggie Czarnogorski, head of digital innovation and implementation science at ViiV Healthcare, about Chapters of Stigma, the virtual reality experience that acknowledges the stresses and micro-traumas that many people living with HIV still endure.
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From HLTH 2023 in Las Vegas, Nevada. It’s the MM+M podcast. I am Jack O’Brien. I am the digital editor at mmm here at the health conference in lovely Las Vegas. I’m proud to be joined by a very special guest today.
Yeah. Thanks for having me. My name is Maggie chernigorski. I’m the head of digital Innovation and implementation science at Vive Healthcare.
Excellent. Well Maggie, it’s a pleasure to have you on the show. Obviously any time that we can have somebody that works from one of the you know, largest drug companies in the world is a privilege for us want to ask you you obviously have an expansive title there. If you can kind of break that down for our audience in terms of what your role is.
Yeah. Absolutely. So I kind of wear to hats a thief both the head of digital Innovation and implementation science. So I started in implementation Science And for those of you that don’t know what implementation science is, it’s basically the research around Health Service delivery.
So at Vive we have done extensive clinical trials and really shown the efficacy of many of the new drugs on the market for both HIV treatment and prevention. But what implementation science does is look at Health Service delivery.
Of those new drugs as they go into the healthcare system because we know the Healthcare Systems vary across the world. So it’s different for an MSM in Atlanta compared to a young black woman in South Africa and wherever the
Patient may be we want to make sure that they have equal access so that the health systems are set up to be able to deliver our medicines and most of our medicines are long-acting and are the current medicines are long-acting. So it’s a huge paradigm shift in HIV. So we’re trying to understand how to deliver them in the health systems of today now covid totally transformed the healthcare system. And as we saw here at Health, right?
Covid just really accelerated digital health and many aspects of digital Health to bring Healthcare to the patient. And so as such we we’ve kind of had to adapt because we have medicines that are health care provider administered and what we realized is that we really have to embrace digital in the delivery of HIV care. And so we started to build in a lot of different digital Innovations into our implementation science work. So to deliver our new medicines, so we kind of embraced Telehealth. How does Telehealth work in a world where we still require Healthcare Providers to administer and injection to patients. How can we connect patients? You know, what are the digital peer-to-peer support strategies? How do we support patients at home to feel that? They’re confident that they are taking their medicines and that they have a suppressed viral load. So we’re thinking about how health systems are evolving and how digital
Patient can help support patients living with HIV and those that are seeking HIV prevention get the best care possible.
It’s so interesting to hear you talk about obviously the lessons that have been learned from covid that can then be applied to other disease states such as HIV and the work that Viva is doing on that front when you’ve been going around the conference here and seeing all the different conversations and presentations and all that sort of stuff. What is stuck out to you in terms of the digital Health aspect because I’m sure that you look around you’re like, oh well, maybe we hadn’t thought about that or oh, this is the trend that’s really of the moment.
Yeah. I know that there’s a lot of interesting.
Work going on across the field. First of all, the breath of different kinds of technologies that have been developed in the last five to six years is pretty impressive and a lot of the companies that I did not expect to be here that are pivoting into the health Space is really fascinating to me. So I was at the Best Buy Booth.
and I was kind of intrigued what is Best Buy have to do with health, but they’re pivoting a bit there. They’re using the infrastructure which is a pretty vast infrastructure across the us to start to set up home health systems for people to be able to take care of themselves at home. And they use their Geek Squad to kind of help assist with those Technologies and getting people kind of set up and know how to use the technology best and I just thought that was brilliant, you know, just using an infrastructure to kind of move with the times and adapt to the needs of today
and are there any sort of trends that you’re really looking at as a digital Health leader where you’re like, okay, this is kind of where the industry is moving.
Is there anything that may be Vive is all kind of participating in
so for us there was two major Trends. I think that
really stuck out one is
Care to the patient, right especially in our in our populations many of them are have difficulty accessing the healthcare system. And I think that’s why HIV is still been a problem for years to come. It is challenging.
if we could bring the healthcare system to the patient Walgreens is here for example and bringing like the community stores involved into Healthcare. A lot of the digital apps patient support apps a lot of the the different infrastructures to bring Healthcare to the patient. I think is a trend that is important for us in HIV. And I think it’s just in general important for proactive Healthcare. And then the other thing is AI technology involving in Big Data. So we do a lot of research at the healthcare and we run a lot of clinical trials and our clinical trials have always relied on patients accessing the healthcare system to know about those clinical trials, right but as we’re trying to reach more vulnerable populations understanding where those patients are and trying to reach them is a different proposition and so using Ai and machine learning on large databases to identify where those vulnerable patients are and
How to access them or what clinics have the more diverse patient populations so we can kind of change our mindset about where we go for a clinical trials because we want our clinical trials to reflect the population that we serve and I think there’s a great way to use data to kind of inform that
there have been so many conversations I’ve had here with leaders all across the Spectrum in terms of improving clinical trials really focusing on diversification Lessons Learned From the code pandemic and so interesting to hear you talk about another key point that I’ve heard from leaders, which is the rise generative AI the use of machine learning to really support these processes and say hey we’ve learned from the past couple years and now we have all this I won’t say new technology because AI has been around for so long but technology that has proven its value and being able to kind of flip the Paradigm in a way
and applying in kind of newer ways or more strategic ways. Yeah, absolutely.
So I want to kind of shift the conversation a little bit over to Chapters of stigma. If you want to give our audience a sense of what that is and how V is working in that space.
Yeah. Absolutely. Thanks for bringing that up. So
One of our biggest challenges and unmet needs is that stigma still plays a big role in our patients’ lives, right? But at the same time, I think it’s still it’s kind of unrecognized that not I will say underrecognized people know that stigma exists, but they still worry that we don’t have answers for stigma. So it’s something that people acknowledge but are
A little bit reticent to get into those conversations because it’s hard. It’s a hard problem to address for sure
I will say I’m an HIV provider. I see patients every Friday even though I work in Pharma and I feel like I’m an empathetic provider. I know my patients. I’ve been I’ve had the same clinic for 20 years. I’ve been seeing my patients and I feel like I know them and I know they’re problems. I know their lives. I know everybody in their lives and one day.
I had one of my patients come in and he seemed heavier than he’s ever been before. It was just something Weighing on a shoulders.
And we started chatting and he was telling me about his day and kind of those microments where he was experiencing stigma and I put my hand on a shoulder and I was like, I’m sorry. I’m so sorry you’re dealing with this but I understand and he looks at me and he’s like, do you do you really understand?
And I was like for some reason something clicked. I’m like, I’m not walked in my
I have never walked in my patient’s shoes and I thought about it and I was like, is there an opportunity for us to use technology to help providers walk in our patients’ shoes for just five minutes?
Could that help them just look at life differently and think about stigma differently. So what we did is we created this virtual reality experience. It’s a 360 point of view experience intended for hcps to walk in their patient’s shoes for just five minutes in one day and to kind of experience those micro-moments that
aren’t necessarily in the HIV Clinic but it’s in that larger ecosystem beyond the clinic that maybe we don’t realize ways heavy on our patients.
Shoulders on a regular basis. So we’ve created this first chapter that we launched at in the international AIDS conference back in July of this year. It was a Hispanic MSM and it was five different chapters of one day the first chapter if for example is a chapter where chapter of Shame where he is trying to take his morning Hill
and his roommate is just walking into his bedroom very casually not trying to be intrusive and he’s trying to hide his pills. So his roommate doesn’t see it and the nervousness the virtual reality experience. What are the allowed us to do is to help the hcps and the healthcare providers understand the nervousness. You can feel the heartbeat. You can hear the inner thoughts. You hear the draw drawer slamming, you know, it’s a whole experiential scenario and we walk through the day of multiple microments of this one patient’s life and I will say the feedback we got was phenomenal. It was an experiment at first but the feedback was phenomenal. I had numerous providers walk away crying because they had never realized what their patients were really experiencing one provider said that it would change how they practice forever. And so I realized that this is a very powerful tool and that and that this kind of tech can really help.
Us change the narrative and change the story by putting people in different people’s shoes and really having them experience it we’re building out the chapters of stigma. So at an upcoming conference, we have a female character a black female and from the kind of her journey experiencing stigma and then I’m hoping to kind of evolve over the next year or so and building a trans Woman character and Adolescent character other characters because everybody has their own story.
It’s so interesting sounds like a brilliant way to be able to incorporate that story technology that is so immersive and can really give you an experience that like you said, even if you’re empathetic you can’t fully understand until you experience it yourself, but also being able to say it’s not necessarily people. I think we’ve come a long way in the HIV and AIDS discussion where it’s not so blatant anymore. It’s not like the movie Philadelphia where there is that sort of like, you know, everyone being so naive and and bigoted in that way but there are still those microaggressions that people talk about where it’s like. Oh, yeah, I can still make it hard as a patient once you leave the
Like to go through your day-to-day life and still try to adhere by your medication still try and live your life the best you can and that’s just such an interesting way of saying like here’s the way that you as a provider can Now understand what they’re going through so that you can you know Model A care Journey for them that incorporates those, you know, I won’t say prejudices, but you know microaggressions within mind.
absolutely, and that’s exactly what we were trying to get at is just
change the pers.
Pects and I count myself in this group of HIV providers feel that we address stigma in our own clinics very well. And I feel like it’s a non-stigmatizing environment where people feel welcome. There’s I mean we do it I would say I’m hoping that me and my colleagues feel like we do a good job about this, but we can’t necessarily control the the greater ecosystem but
You know what? There is a role that we play where we need to start bringing that to light and educating that larger ecosystem. Like we need to do better than just changing ourselves. We need to start changing the greater environment if we’re really going to have an impact on HIV stigma in the world,
which is also a universal concept for other providers too where it’s like there are the social determinants of Health. There is the world outside of your clinic where you have to account for because it’s not yeah you control if they’re in there for the hour to in clinic but beyond that it’s anybody’s guessing that can really have an impact on their what their health and a number of facets
And other social determinants of Health add to mental health stress adherence challenges, you know how they interact with the healthcare system in general. So there’s so many Downstream impacts that can be kind of addressed if we start thinking Beyond just the Healthcare System.
I want to ask you on the stigma front because obviously you are so well versed in the HIV space and you have these interactions. I think a lot of people and maybe a lot of our listeners truly have an experience before when it comes to the state of HIV and AIDS conversation and that narrative in 2023. What are still some of those misconceptions or misunderstandings? Because again, I think it’s changed from what it was 30 years ago where it was a lot more of like, you know, the Magic Johnson of it all and and people really coming to it for the first time but now we’ve had 30 years and I’m sure there are people are like, you know, they still have their their prejudices. They’re misunderstandings about it.
Yeah. Well now it is and I don’t know if everybody knows.
But this is what we this is what we need to communicate better is first of all, the treatments are incredibly effective for HIV, right? So if somebody starts treatment for HIV, let’s say they are diagnosed in their 20s. There’s no reason they’re not going to live till they’re 80 90. I mean the lifespan of somebody living with HIV is the same as anybody else as long as they’re on treatment and suppressed if they’re suppressed. We have the same you equals you
undetectable equals untransmittable, right? So if you’re virally suppressed you are a no danger to anybody else around you, right and the treatments nowadays are so good that to keep you suppressed quickly safely easily and keep you alive and healthy for a long time. So if we could spread that U equals U message to the Greater Community and they really understand that if they you’re on undetectable you really are on transmittable. I think that’ll go a long way
and I know a lot of other in addition to be there a lot of other drug makers that have made campaigns and awareness efforts around that same concept because they’re saying if you stay on your treatment and again, but it can be impeded by stigmatization where it’s like well, I don’t know if I you know, I don’t want to be singled out because I am HIV positive or whatever and then that gets in the way of being able to get to that point that you talk about in addition to the larger Public Health effort. I know the goal is by the end of the decade to have HIV defeated in the US. It’s a very ambitious Public Health goal, but I know it’s the work.
Of your organization and others that are trying to make that possible for patients in the broader public
absolutely and the U equals you message the stronger that we can kind of amplify that message. I think the the closer we’ll get to that goal. I think it is an achievable goal. It’s an ambitious goal, but I think it’s an achievable goal, but we really need to have the Greater Community understand it.
Excellent. Well, Maggie, I’ve really appreciate you being on the show here and talking about obviously your experience at health and the work that you’re doing in the HIV space want to take kind of a hard left turn here as we’ve been asking leaders who have come to Vegas that you know, obviously they’re here for the health conference, but beyond the conference, there’s the shows shopping all that sort of stuff. What are you most look forward to when you come to Vegas?
So I haven’t been to Vegas in 20 years. I will say yes, I will say this whole experience has been quite new to me. I have loved the strip. I love the vibrancy and the action and everything going on my colleague and I were talking about going to the sphere tonight. And I think that’s a pretty exciting just very jealous. Yes. So I I think that’s probably one of my highlights that and the restaurants I have to say the food around here. It’s good food is incredible. Yes. I am so excited. I’ve not eaten the swell in a long time.
No, you can go anywhere and get you can get Steak Seafood. You name it Mexican food. It’s incredible out here.
well, Maggie, thank you again for stopping by our show and our finger insights. We really appreciate it.