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In today's episode, we sat down with Daniel Hernandez, MD, and Shilpa Venkatachalam, PhD, MPH, of CreakyJoints, to highlight health disparities in marginalized communities and introduce their exciting new venture, CreakyJoints Espanol.
In today's episode, we sat down with Daniel Hernandez, MD, and Shilpa Venkatachalam, PhD, MPH, of CreakyJoints, to highlight health disparities in marginalized communities and introduce their exciting new venture, CreakyJoints Espanol. We discuss how health disparities impact Spanish-speaking patients, what rheumatologists need to know and chow to encourage their patients to use it, and why offering bilingual health information is so important to the Hispanic community.
Rheumatology Network: Hi, thank you for joining me today. To begin, the COVID-19 pandemic has exposed health disparities in historically marginalized communities, including Spanish speaking communities. What are some of the ways in which CreakyJoints is addressing these long-standing disparities?
Shilpa Venkatachalam PhD, MPH:So I can jump in here. So you know, again, thank you for having us. This is a really important conversation to be had. We know that COVID-19 has exposed decades long systemic inequalities and systemic inequities, specifically in populations that have been consistently marginalized, not just now, but over decades, and have had lesser access to quality food, job security, health care, housing. And all this has led to poorer health outcomes in these communities. CreakyJoints is part of a larger umbrella organization called the Global Healthy Living Foundation. And this sort of amplifying the voices of marginalized communities, Black communities, Hispanic communities, people of color, indigenous communities; this has been a commitment at the Global Healthy Living Foundation, not just this year and last year, but for a long time. So we've done a few different things. By way of addressing these inequities and inequalities. I'll just touch upon a few just to give you an idea.
So very early on last year, when sort of racism and healthcare, the intersections came together, we saw that with COVID-19, we saw that with the murders of George Floyd and many others, we very early on as an organization, put out a very firm statement standing with Black Lives Matter. But I think beyond that, what we wanted to do is work with our communities of patients to really amplify the link between health disparities, health outcomes, and racism. So you know, what does being marginalized for decades actually do to healthcare and to health outcomes? That is something that we talked very, very strongly about.
Another example: CreakyJoints, as many people might know, is an online community of people living with all kinds of arthritis with all kinds of rheumatic and musculoskeletal diseases. And so 1 of the things we do through the CreakyJoints platform is education. And part of education is having uncomfortable conversations exactly around topics like this. And so we held something called CreakyChats. CreekyChat is really using the Twitter platform to engage our communities to talk about certain topics. And we engaged our patient community to really talk about the link between the Disability Rights Act, and movement, and health care. So we brought in people from, you know, from Black communities from Hispanic communities that would participate. And then you know, I mean, I can go on about this, but I'll give you 1 last example is: we do all kinds of all kinds of things for our community. We do education, we do research, which I'll touch upon a little later. But 1 of the things we do is we bring experts from various fields to talk to our patient communities. And so we hold webinars for our patient communities. And we brought in the Hispanic experts from the Hispanic community, experts from the Black community to talk about specifically how marginalized communities today continue to experience the impact of decades and decades of unequal access to almost everything to do education, to job security, etc, and how that actually impacts very specific, for example, chronic pain conditions, rheumatic conditions, and musculoskeletal conditions. So, I'll stop there. There's a lot more to be said in terms of how we address it. But I think suffice to say that this is a commitment of the organization to continually amplify the voices of marginalized people.
RN: How have health disparities impacted Spanish speaking patients living with rheumatologic conditions like arthritis?
Daniel Hernandez, MD:Sure, I can I can jump in. So historically, it's hard for Spanish speaking communities to find comprehensive health information and education in Spanish. This is very important because it helps them understand their own experience of the disease, as well as explain it to family and friends. This latter point is so vital to the success of the quality of life of the patient because, especially in the Hispanic community, the importance around the support network of family and friends is very, very important. If family and friends aren't on board with the treatment plans and with reminding the patient of their appointments or making sure that they are held accountable for the treatment of their condition, it usually doesn't turn out as productive as we'd like.
Therefore, here at CreakyJoints Espanol, which is part of the Global Healthy Living Foundation that Dr. Venkatachalam was speaking about, and how we all we are all in it 100% to expose these health disparities and to find ways to address them. So 1 of the ways that we do that is we provide all of our education, support, and research opportunities in Spanish entirely free for our community. And as Dr. Venkatachalam also mentioned, our materials are all informed by science and health care experts. We work with them. We work with key opinion leaders to make sure that what we are creating resonates with our community. It's important to us that people living with arthritis proactively participate in their disease management and contribute to a better understanding of people living with these conditions.
RN: What are some of the specific barriers that the Hispanic community faces securing access to doctor's diagnosis and treatments?
DH: So, the specific barriers are basically this rampant misinformation that we've read about, and it has been exposed even more during this pandemic, especially in Spanish speaking communities. This along with the data that we know where the Hispanic patients are nearly twice as likely to become disabled from arthritis and experienced joint damage. And those are the barriers, the specific barriers that we're facing. And they go hand in hand, right. So, this rampant misinformation creates a lag in diagnosis, lag in treatment, therefore, an increase in drawing in structural damage to patients where otherwise they could they could avoid it by an early treatment and diagnosis.
RN: Hispanics have been underrepresented in medical research. Why is that?
DH: So that's a really good question. I'd love to give you a very straightforward answer. Unfortunately, I don't think anybody has that. And there are some there are many points to this, right. So, the rampant misinformation is 1 of them. Of course, lack of resources within the community. Lack of trust in research institutions due to structural racism is 1 that is a pretty novel thing that the medical community is now seeing and accepting as a whole. So being able to identify these and address them as a community is very important. And I think is a step forward in the right direction to close that gap in representation within medical research.
RN: CreakyJoints launched ArthritisPower more than 5 years ago. Why did you create Arthritis Power Espanol when the app was already available to all US people living with forms of joint bone and inflammatory skin conditions as well as arthritis and rheumatological manifestations of gastrointestinal tract conditions?
SV: Great question again. And I can jump in here. So, ArthritisPower was developed about 5 years ago and the initial funding came from the Patient Centered Outcomes Research Institute. Right now it serves a double purpose, so to speak, ArthritisPower. It is a research registry as well as a tracking app. And as such, it provides infrastructure and capacity to conduct what we call “patient-centered research.” So, you know, I think it's really important to understand the push and the drive behind patient-centered research, in order to understand why we offer it in Spanish. And 1 of the central sort of pillars of patient-centered research, is that it's meaningful for those who want to use it for our communities. And traditionally what we've done with research is we've sort of looked at population level research, we haven't looked at the individual.
So, 1 of the things about patient-centered research is that it looks at the individual as a unique person with certain characteristics. And having this disease, whatever the disease is, and so every sort of, you know, we now know that rheumatic diseases, musculoskeletal diseases, like many other diseases behave very differently in different populations for a variety of reasons. And it behaves very differently in individuals who are different based on their unique characteristics, values, and path preferences, as far as treatments are concerned. So it's in part, I think, because we are doing patient-centered research, we want to be as inclusive as possible, because part of patient-centered research. Advancing research and rheumatic and musculoskeletal diseases is not understanding just a piece of the puzzle, but to understand the entire picture. And to understand the entire picture, you have to include everyone. So, you can't keep people out and just do research with a certain part of the population and then expect to advance our understanding of these disease conditions. So that's 1 of the reasons.
The drive behind doing patient-centered research is we have to continue to address differences, both at the population level and at the individual level. And 1 of the ways to do that is to be as inclusive as possible. And this is why we translated and, you know, I use translation as a sort of a very loose term, because there's a lot of cultural sensitivity in the way we do our translations that Dr. Hernandez can probably speak better to, but this was part of the reason why we wanted to bring ArthritisPower to our Spanish speaking communities.
RN: What do rheumatologists need to know about ArthritisPower Espanol to encourage their patients to use it?
SV: So I again, I can I can take this question as well. And again, Daniel can help here as well. But what arthritis power essentially is, is an infrastructure offers capacity to conduct research. Now, with rheumatic diseases and musculoskeletal diseases, we know that there's a piece of the puzzle that comes from lab reports and blood tests and what we call referred to as clinical data. There's also a very important part of the puzzle that comes from people who live with these conditions every day, the sort of the hindrances they face when they're going through a diagnosis or accessing treatment, right? How that leads to outcomes, how do people manage their symptoms, day in and day out? How do they respond to certain treatments, right? Whether that's those are newer treatments, or much older ones. So I think what we want researchers and clinicians to know is that we are able to offer an infrastructure and a capacity to integrate the patient experience in a very validated and scientific manner with clinical data. And when you put these 2 pieces of the puzzle together, what you are inevitably doing is advancing understanding of these disease conditions.
RN: Why and how has CreakyJoints Espanol increased its communication platforms to reach Spanish speaking patients and their families?
DH: I could jump in here. So as Dr. Venkatachalam was saying, that sense of inclusivity has been baked in to everything that we're doing within the organization and 1 of those things is cultural sensitivity and taking the information to where the patient is or where the community is, right.
Within that for the Hispanic community, specifically, what we've done is CreakyJoints Espanol, which is a website full of articles. You can find that at CreakyJoints Espanol, all of them in Spanish. But we're also taking this information to the community through WhatsApp, which is widely used by our Hispanic community. Also social media, obviously, Facebook, Instagram, and ArthritisPower Espanol, which is the new mobile and desktop application which will help people with all forms of arthritis track their disease using the same questionnaires that doctors use during appointments. Plus, they can also participate in voluntary research studies. So that's what we’re highly motivated in, in including the Hispanic community into this this type of research. And that's how we're doing it through this application.
RN: Why is offering bilingual evidence-based health information so important to the Hispanic community?
DH: I feel like the only way to combat this rampant misinformation plaguing our community is to actively and proactively work against it. And the best way to do that is by doing outreach, right, so education support research, we're continuously aiming to do that, with all of the effort with all of the resources that we offer.
RN: Looking ahead, what do you hope to learn from Spanish speaking arthritis communities about their experience of arthritis?
SV: So, you know, I can jump in here again. I think the easiest answered your question is we want to learn what our communities want to teach us about living with these conditions. The person living with the condition knows best about their condition, right? They know the challenges they're facing every day. And so, because we want to learn about the experience of living with the disease, from those who actually have them. I think that's what we want to learn from them. Because, again, we use the term precision medicine very often today, in our field, but I think this is precision problem solving. Right? So, unless we know the specific needs of our community, the specific challenges that our community is facing, we cannot stop thinking about meaningful solutions. So, it's really precision problem solving and making research relevant and meaningful for those who need the research to better their lives. And that's what we hope to learn from Spanish speaking communities as well.
RN: Thank you so much for joining me today. This is very informative.