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As a part of our partnership with CreakyJoints, Rheumatology Network sat down with Lauren Gelman, Director of Editorial Services, for the Global Healthy Living Foundation. CreakyJoints is a support, education, advocacy, and research organization for people living with arthritis and rheumatic disease.
As a part of our partnership with CreakyJoints, Rheumatology Network sat down with Lauren Gelman, Director of Editorial Services, for the Global Healthy Living Foundation. CreakyJoints is a support, education, advocacy, and research organization for people living with arthritis and rheumatic disease. We delve into a brief background of CreakyJoints, the research that they publish and present, and how rheumatologists can benefit from this organization.
Rheumatology Network: Hi, Ms. Gelman. Thank you so much for joining me today.
Lauren Gelman: Thank you for having me, Lana. It's great to be here.
RN: So to begin, can you give me a little bit of background on CreakyJoints?
LG: I'd love to. So, CreakyJoints is a nonprofit, digital community for millions of people who are living with arthritis and their caregivers. We've been around for 20 years. We were founded by Seth Ginsberg, who is a person living with arthritis and his mentor Louis Tharp, and they're still running our organization day-to-day today. And when CreakyJoints was started more than 20 years ago, at the dawn of the internet, it was really about building community for people who are living with chronic illness and were having a hard time finding each other. And it really started out in a very organic way from a dorm room bunk bed, as a message board and a blog site. And over the past 2 decades, it's expanded dramatically to meet the many different needs of people living with arthritis and rheumatic diseases. So, we have a focus on research, advocacy, education, and support, and our organization has evolved to cover patient needs in each of those areas.
RN: How do rheumatologists benefit from CreakyJoints?
LG: So, this is a great question. Rheumatologists are a big part of our community and we really want to partner with them because we want to help patients feel better. They want to help patients feel better and when rheumatologists know about CreakyJoints, they can refer patients to it, or they can make patients aware of the resources that we offer. And/or they can be familiar with us when patients come to them, you know, mentioning CreakyJoints, [eg] I read this on CreakyJoints, or I took this assessment on CreakyJoints. It all at the end of the day serves the patients and their wellbeing. So, we want rheumatologists to be well informed about the education, the resources, the community that we provide; we want them to be able to tell their patients who have questions about their disease to go there for more information. And when you think about it, you know, the typical patient is seeing a rheumatologist, you know, every 3 to 6 months, for 10, 15, or 20 minutes at a time. But we get to be there for patients every single day through our website and through our social media channels. And so, we really see ourselves as being part of this surround sound community where we want to make sure that we're providing expert-backed scienced-backed information that's going to support what patients are hearing from the rheumatologists in the clinic.
RN: What tools and resources do CreakyJoints have for patients that rheumatologist should know about?
LG: So many. I'm really glad you asked this question. I think, you know, a good way to think about it is you can go to CreakyJoints and find a variety of tools and informational resources to help you learn more about your disease, and live better with it and improve communication with your doctor about it. One of the main tools, one of the first big pushes that we had at our organization about 6 or 7 years ago was the launch of our ArthritisPower research registry. We really want rheumatologists to know about this, because it's a great opportunity to give patients the ability to do 2 things. One is ArthritisPower, at the end of the day, is a symptom tracker. So, you can sign up for ArthritisPower, it's available in any app store or on the desktop. And you can use it to track what we call “different patient-reported outcomes.” So, patients are struggling with different aspects of pain, fatigue, sleep disturbance, mood issues, and they want to get a better grip on how the symptoms are changing with their environment with the medications they take. And they can use ArthritisPower to do that, and then communicate with their doctor about it. Which is so important because as we know, you might not really recall how you were feeling 3 or 4 weeks ago, but that matters when you're discussing long-term disease management and whether you know the treatments that you're on are working for you and whatnot. The second thing that ArthritisPower does, which is so important, is it offers patients the opportunity to participate in voluntary research studies. So, ArthritisPower is a research registry. And we do we partner with major medical institutions and academic and clinical rheumatologists to conduct studies that are meant to share the patient perspective on what it's like to live with chronic disease. So, this is a really great way to contribute back to the community, to share your voice and your concerns, and to make sure that research and the academic and clinical community is aware of what you're going through on a regular basis and can address your needs accordingly.
RN: Can you tell me a little bit more about why CreakyJoints developed eRheum.org and PainSpot?
LG: Yes. So, eRheum and PainSpot are 2 other really important resources that CreakyJoints offers to patients, and they address different aspects of unmet needs. And rheumatologists should be aware of these tools as well. So, let's start with PainSpot. PainSpot is what we call a diagnosis accelerator. And it's simply, you know, you think about, people wake up, and they have pain. They have pain in their shoulder, they have pain in their hand, they have pain in their foot, and what's causing that pain? It could be a type of inflammatory arthritis, it could be a musculoskeletal disease, like osteoarthritis, it could be an injury, and there's really not a great way for patients to know that. They certainly will Google. But until they get in to see a doctor, you know, they're kind of struggling to figure out what can be causing their pain. PainSpot doesn't diagnose patients, of course, but it offers a series of clinical questions; the same kinds of questions that doctors would ask during that during an appointment to help patients figure out different possible explanations for their pain. So, they can go in to a provider a little bit more informed, a little bit more educated about. Well, could it be this, could it be that, you know, I experienced pain that is of this nature. It might give them tools to describe their pain better. And when patients finish a pain spot assessment, they're given a customized email series that helps them learn more about their possible diagnoses. And they're given education from CreakyJoints about what those diagnoses mean and how they're typically treated. So, all that really makes them a more informed patient to go in and speak to a doctor. And it kind of takes them outside of that “Google universe” where they might be poking around and not really finding what they're looking for. One of our goals, because we've seen from our research with ArthritisPower is that diagnostic delays are really challenging for patients. Not only are they living with symptoms and pain and fatigue for years and years and years, and they're going around just feeling frustrated by not knowing what's wrong or potentially getting misdiagnosed. And PainSpot is a great tool to help address that issue. It was actually founded by a rheumatologist and clinical practice, Dr. Doug Roberts, who partnered with us to help bring it to a larger patient community last year, and eRheum is a new tool that launched during the pandemic, because we saw right away, as early as the middle of March of 2020, that there was going to be a huge shift toward telehealth visits during the pandemic. And our patient community at that time was largely feeling very positive toward telehealth utilization. They viewed it as a way to continue to see the doctor while they were able to stay safe in their homes. We could talk about this a little bit today as the dramatic effect of the pandemic on our patient community and their mental outlook and their approach to daily living. But we saw both from our conversations with patients and rheumatologists that there were problems a little bit with how people were addressing telehealth. There's better ways to approach an appointment and less better ways to approach an appointment. And we wanted to make sure that patients were getting the most out of those visits. So, eRheum is a personalized tool that lets you check off the criteria that you have, whether it's a first time visit or what kind of treatments you're getting, or what your main issues and concerns are, and it gives you information about how to optimize your visit with your doctor in a telehealth environment. It educates on the pros and cons of telehealth and how to navigate technology challenges. And we really want to make sure that patients are getting an optimal experience when they're seeing their doctors in a virtual environment.
RN: What kind of research does CreakyJoints publish and present?
LG: So, research is a huge part of our organization. As I mentioned earlier, ArthritisPower is the research registry that we offer patients. We have more than 30,000 people who are consented in the ArthritisPower app. These are people with all kinds of rheumatic disease who take our assessments regularly and participate in voluntary research studies. So, a big emphasis of this research is on patient-reported outcomes, and what that says about how patients are managing their diseases. So, a goal of our research is to shed light on patients lived experiences with different types of arthritis and promote shared decision making with their doctors. Some of our latest research has focused on wearable devices and how patients tracking their health for wearable devices might help assess things like disease activity, and studies about patient engagement with digital health measures. We think about what are issues that patients really care about. We have a group of patient governors that help weigh in on the resource that ArthritisPower does. And that also helps us think about what are issues that are coming up in the patient community that more research needs to be done around. So, a couple of years ago, we did a big study, for example, on medical marijuana and CBD and patients experiences with that. We've done research on how patients feel about various symptoms and which symptoms are most important for them to track and how patients think about different important parts of the disease journey, such as what motivates them to seek medication changes to facilitate getting diagnosed more quickly. Things like that.
RN: Is there anything else that you would like to include about CreekyJoints before we wrap up?
LG: I think a big part of our mission, as so many organizations have had to shift and pivot during the pandemic, CreakyJoints and our parent nonprofit, the Global Healthy Living Foundation, really made a big shift last year to address the needs of the rheumatic disease and chronic illness community during the pandemic by launching a COVID-19 Patient Support Program for chronic illness patients. And this is a free program, you can sign up for it at GHLF.org, the Global Healthy Living Foundation's website. And basically, we want to make sure that patients who have rheumatic diseases and other chronic illnesses, such as comorbidities that go with those rheumatic diseases, feel like they're being served with information that's specific to them during the pandemic. So, this could be about, you know, how their diseases are affecting COVID-19 susceptibility and complications, how their treatments are being affected by COVID-19, how to utilize telehealth more effectively, lots of questions over the past few months about vaccines. And this is information that certainly is widely available to the healthcare professional community, but not necessarily to patients and certainly not in an organized robust way. So, we've been providing regular resources and support to patients for over a year now. And it's a really important part of the way we fulfill on our mission to be there for patients in every aspect of their disease management. And I would also add to that CreakyJoints Español has been a big push for us over the past year and a half or so. We want to provide the same education and support that's available in English to people and their loved ones who are more comfortable communicating in Spanish. So, in addition to our CreakyJoints Español website, which is growing rapidly, we've also started to develop and enhance our Spanish language social media channels on Facebook, Instagram, and WhatsApp. And you can learn more at CreakyJoints, CJES.org. But that's a really important thing for rheumatologists whose patients are more comfortable communicating in Spanish to know that we're not only serving the English-speaking audience, but that we're trying to reach people where they are in other languages as well.
RN: Absolutely. That's wonderful. Well, thank you so much for speaking with me today. I really appreciate it.
LG: Thank you for having us. It's great to be able to inform the rheumatology community about the ways that CreakyJoints can help patients and that we can all work together to improve care.