Expert Conversations: Optimizing Care in Rheumatology Through Telehealth
A peer-reviewed white paper that describes the best practices for telehealth in a rheumatology setting is being developed. The recommendations will address what telehealth-related care delivery should include, how to deliver it, and how to standardize high-quality care. The paper will be a product of the newly launched Telehealth-delivered Healthcare to Improve Care (THRIVE) study, which is evaluating the quality of telehealth services in rheumatology. In this podcast, the study’s co-investigator, W. Benjamin Nowell, PhD, and its primary investigator, Swamy Venuturupalli, MD, discuss:
- benefits and challenges of telehealth in rheumatology
- the need to standardize telehealth care in rheumatology
- the long-lasting impact that telehealth can have on the practice of rheumatology
- suggestions for a productive telehealth appointment
W. Benjamin Nowell, PhD, is the director of Patient-Centered Research at CreakyJoints and Global Healthy Living Foundation. He is also the principal investigator of ArthritisPower.
Swamy Venuturupalli, MD, is the founder of Attune Health in Beverly Hills, California, and an attending rheumatologist at Cedars-Sinai Medical Center. He is also an associate clinical professor of medicine at the University of California, Los Angeles.
W. Benjamin Nowell: Hello, my name is Benjamin Nowell, PhD, and I am the director of Patient‑Centered Research at CreakyJoints, a digital patient organization for people with all forms of arthritis.
I’m also the principal investigator of our ArthritisPower Research registry, which was created by CreakyJoints in partnership with the University of Alabama at Birmingham.
Today, I’m here with Dr Swamy Venuturupalli, MD, FACR. He’s the founder of Attune Health and an attending rheumatologist at Cedars‑Sinai Medical Center in Los Angeles. He is also an associate clinical professor of medicine at UCLA. We offer our thanks to Rheumatology Consultant for hosting our expert conversation today.
As background, the American College of Rheumatology Research Foundation recently awarded, only for the second time, the Norman B. Gaylis, MD, Research Award for Rheumatologists in Community Practice. That’s also called the Gaylis Award for short. This year it was awarded to Swamy to support telehealth‑delivered health care.
The Gaylis Award provides funding for rheumatologists in community‑based practice who, in addition to taking care of patients, want to test their own observations through research.
Launching in January, Dr Venuturupalli will be the lead of a 2‑year study called the Telehealth‑delivered Healthcare to Improve Care, or THRIVE study. CreakyJoints will be contributing to the study as it progresses.
I’d like to welcome Dr Swamy Venuturupalli to this conversation as well. To start, Swamy, some questions for you. First of all, how have you integrated telehealth into your own private practice? Why do you think it’s important for us to study the delivery of rheumatology telehealth at this time?
Swamy Venuturupalli: Ben, thank you so much for that introduction, really appreciate it. Thanks for the opportunity to have this lovely conversation with you.
As soon as the coronavirus hit and our patients started getting worried about coming to our offices and we started thinking about how to protect them the best, telehealth emerged as an important and viable alternative.
The statistics on this are quite staggering. The uptick in telehealth in the first few months of the pandemic, in March, April, and May of 2020, saw more than 80% or so of most community rheumatology practices going to a fully virtual platform.
When we started doing this, we didn’t have anything to base our decisions on how we conduct telehealth: Which patients are particularly suited for telehealth? Which patients are absolutely not suited for telehealth? What should a telehealth encounter look like? Which platform is better than others? What about HIPAA compliance? Etc.
The rules were changing by the minute if not by the day. We had to become inventive. We had to look for resources that answered all of these questions. The ACR put together a position statement that was helpful. There were other societies that also did similar things. We started looking at the literature.
I actually personally reached out to a friend of mine who had been a researcher in the telehealth field, Neil Suarez, who helped me think through all of these aspects of how to conduct an optimum telehealth encounter from the home‑based office setting or your office setting in your private office.
We started integrating very quickly. Initially, it was pretty much everybody who wanted to be seen was told that we are limiting the number of patient visits in the office. We started breaking our own group of doctors into separate teams so that we reduce the overall traffic of humans in our office itself. [laughs]
We started integrating telehealth right off the bat. Some of our patients preferred FaceTime. We knew that it was not HIPAA compliant. Luckily, we were able to ignore that because of directives from the government that said that was OK to spend strict HIPAA‑compliant software solutions, etc. for the time being.
We used the combination of things like Zoom, FaceTime, Doximity which had a very nice app. Some of my patients were on Android phones. There is a software there called Duo. We figured out that we need to be available to our patients. They were freaking out a lot [laughs] about the coronavirus pandemic. They needed answers.
They were all told initially that autoimmune disease is the highest risk category for coronavirus complications. We have to take this extremely seriously. We were able to use a mishmash of different software, different approaches. With all of the societal support and all of our collective discussions amongst our own groups, we figured it out.
My office, like every other office, had to think on the fly and come up with some solutions. Then within a month or two, we got adept at doing this in faster style. We started figuring out that this is the best way to do it for us.
As we kept doing it, we got better at it. We figured out that a patient with a hot swollen knee joint, for example, was probably not the best patient to be offered a telemedicine appointment; that patient really needed to be seen in the clinic.
On the other hand, a patient who had some labs drawn a week prior and needed discussion about laboratory work may be a very appropriate patient to be seen through a telemedicine appointment. I don’t know if I answered your question that was how we did it in our practice.
BN: Thank you. That’s really interesting. As you mentioned, it came up all of a sudden. It sounds you responded pretty rapidly in your clinic to figure out how to minimize people being in contact with each other and then adapted, and figured out some platforms to use like Zoom, Doximity, FaceTime, Duo, and so forth.
I guess that leads me to my next question, first of all, congratulations on the Gaylis Award; that is very exciting, and a prestigious award...
SV: Thank you.
BN: ...fantastic to get that. It couldn’t come at a better time. I know the THRIVE study that you’re leading is going to evaluate the quality of telehealth services when it’s provided to a rheumatology patient in their home. It will also provide some recommendations for physicians about best practices for telehealth care and rheumatology.
You mentioned some of your casual observations, even just thinking through the fact that some patients are more appropriate than others for telehealth, but some you just really have to see in person. I guess the bigger question then is, given the different platforms and the option, why do you think it’s important to have some standardized telehealth care, especially in rheumatology?
SV: One of my senior partners at the beginning of the pandemic was extremely worried about how they might be able to handle the whole technological transition.
Even financially, we were all wondering how things would work out. Besides technology, a lot of patients really take to this platform. We grounded ourselves by thinking that, “Hey, we’re rheumatologists; we’re problem solvers. That’s what we do for a living. This is another problem. We’re going to figure it out, and we’re going to solve it.”
That’s helped us ground ourselves a little bit and come up with the solution. If you think about rheumatology, we have all these different diseases, which are chronic in nature, or autoimmune in nature. Historically, our field has been able to make sense of these diseases, which are really hard to diagnose.
To confirm a diagnosis, it takes a long time and longitudinal follow‑up of a patient to see different kinds of symptoms that start with one thing and then progress to another thing. We’ve learned from those experiences that the only way to move the field forward is a systematic approach.
By systematic approach, breaking down the main components of the disease, measuring labs, measuring clinical signs, measuring symptoms, coming up with composite outcome measures, then keep measuring them over time and keep improving them over time.
As rheumatologists, we have learned from taking care of extremely complex patients with chronic diseases that a systematic approach is extremely important to move our field forward. That was the basis of the way that we wrote our grant, which was, can we think about doing telehealth in a systematic manner to benefit our patients?
One thing that stuck with me was that patients who come to see me in my practice sometimes drive for 2 or 3 hours. I live in Southern California, sometimes traffic makes a 2‑hour drive into a 4‑hour drive, even though the pandemic forced us into the whole telehealth game.
We felt, and across conversations with other rheumatologists, we felt that this might be an important tool for us to use in appropriate situations. We don’t have any literature to guide us on what the best telehealth mechanism, platform, or way to collect all of the important data that we need to make important decisions.
How do we do all of that in this new world and approaching it in a systematic manner was the basis of this grant that we wrote, including a lot of academic partners like Jeff Curtis of the University of Alabama; yourself, Ben, from the Global Healthy Living Foundation and your team, which is extremely talented; and Neil Suarez, my friend who’s a telehealth researcher.
Putting together this multidisciplinary team to solve this very, very important problem was the basis of how we thought through this grant. We felt that it’s important because telehealth might actually be here to stay beyond the pandemic. We, as rheumatologists, feel that the way to solve these complex problems is a systematic approach. This is what this grant tries to address.
One important thing is that most of the literature that we looked at in telehealth was based out of an office‑based telehealth program or a center‑based telehealth program. These are places which have high‑definition internet connections, and the patient might be also in a similar center with high‑definition, telephonic, or video connections, etc.
But in this new situation, we were using all kinds of different platforms that were commercially available from the patient’s home with variable technology capabilities. That’s never been studied before. We felt it was important to study and come up with some sort of recommendations to our peers in rheumatology on how to conduct telehealth when our patients are in their home.
BN: That’s great. It’s sort of necessity is the mother of invention. It sounds like the necessity now is to get some standardization in place to help guide people now that we have more time to reflect on it.
SV: Well said. Ben, let me ask you a question, because you and your research collaborators at the Autoimmune Research Collaborative conducted a telehealth survey with rheumatic disease patients during the COVID‑19 pandemic. What were your main findings? Can you share it in this platform?
BN: Sure, I’d be happy to. We presented results of this year’s American College of Rheumatology meeting at Convergence this year from analysis we did of more than 20,000 patients seen by rheumatologists who are part of the American Arthritis and Rheumatology Associates—our AARA network—and that’s the national rheumatology practice group.
What we found overall was that during the first half of 2020, as the COVID‑19 pandemic was spreading—roughly from between January and May–we found that people with rheumatic diseases frequently, as you would expect, avoided in‑person office visits and also avoided laboratory testing.
Even in some cases, they discontinued their immunomodulatory treatments without the advice of their rheumatologist. At least 10% or more of people, at that time, were doing that. That’s concerning, of course.
One of the things that we found is that even as the telehealth visits did increase during that period and office visits declined, the frequency of missed or canceled in‑person appointments also increased. In short, even though there wasn’t definitely an uptick in the use of telehealth, it didn’t quite catch up to the number of cancellations that were happening.
SV: That’s very interesting. I remember during that time that a lot of our patients were concerned about the COVID pandemic and how it would relate to their own condition, oftentimes having autoimmune diseases, needing frequent lab tests, etc. Most of the visits were really consumed and addressing some of those concerns. It sounds like your survey really picked up on all of these trends.
Again, that data is amazing that you were able to capture 20,000 patient visits. I commend you for that. It was certainly very interesting abstract that you guys presented. It will...
BN: Thank you.
SV: ...definitely be part of data that we are going to look at in this study too.
BN: Absolutely. One of the things we found, you mentioned, that sometimes your patients have to travel a long way to get to their appointments, for 2 or 4 hours. One of the things that we thought we would expect to see is that people in rural communities would make a greater use of telehealth because practices are more spread out. It requires traveling farther to get to an appointment.
But our studies show that actually people in urban centers had greater concerns about COVID‑19 because of population density in cities. Those were the folks who are actually more likely to make the switch to telehealth at that time. It seems like in some cases, urban centers adapted quickly like yours did, to maintain access to care.
SV: That’s fascinating that you actually were able to see that. Fast forwarding seven to 9 months later, we know that concerns for the pandemic were certainly much more heightened in urban centers. It makes sense retrospectively, but you were able to see that in real time. That’s fascinating that you were able to find that particular observation to be valid.
BN: Definitely. As you mentioned earlier, even before the COVID‑19 pandemic, people living with autoimmune rheumatic diseases were at high risk for an infectious disease or might have other physical or mental health reasons that might make it hard for them to come into the office for an in‑person appointment regularly.
Thinking even beyond the sort of urgency of this year and the adaptations that a lot of folks had to make this year, what do you think makes telehealth particularly important for rheumatologists and their patients, even beyond this current era of social distancing?
SV: Thanks for that question. We all know in rheumatology that there is a significant workforce shortage of rheumatologists and rheumatology‑trained mid‑level practitioners to service the growing needs of our patients.
As urban centers expand, driving distances increase, as people move into different rural parts of the country—those all kind of things that we’re seeing now—telehealth allows rheumatology to be practiced, and I suspect it will improve our overall effectiveness in dealing with our huge backlog of patients that need to be serviced by rheumatologists.
It offers another convenient way for our patients to have access to rheumatologists. In some cases, I can see it improve access to tertiary medical care centers, for example, now that telehealth is getting established as a viable option. And hopefully, the peers might follow suit and continue paying for some of these telehealth visits.
It would be interesting to see how tertiary care centers adapt to this. For example, it might be interesting to get opinions on rare diseases like, myositis, etc., from experts who see a lot of these cases. They can opine using telehealth. That will be an advance in our field.
It’s interesting, even before the pandemic hit, Rohit Aggarwal at the University of Pittsburgh, and I collaborated on an NIH‑funded study. It was funded as an RO1. The whole question was, can we provide adequate care for patients with myositis using a telehealth platform? Also, can we recruit patients into clinical trials?
The premise of the study was that the average patient travels about 3 to 4 hours, even more sometimes, to get tertiary‑level care for rare disease like myositis. I think this whole movement towards telehealth will certainly add to the access issues that our patients face, but it will probably help, and hopefully help, get access to tertiary‑level care as well.
With patient convenience factors, I think it will be well‑accepted for patients who might have difficulty making it into a rheumatologist office, or other specialist office even, on a regular basis without...The travel time is cut out.
Overall, I think this is a move in the right direction, as long as we are able to troubleshoot and figure out what are the kinks in the system and how do we approach telehealth in a systematic manner so that we don’t miss some of the important things that we have learned are critical in the care of patients that have chronic autoimmune diseases.
Ben, I wanted to ask you actually. You work with the CreakyJoints community and the ArthritisPower research registry in the app. You’re seeing a lot of patient feedback, and you’re seeing it in real time and you have a very vibrant community that engages about all of these issues.
What do you think they are talking about? Could you share that with us? What do you think are the opportunities to improve the patient experience? What would you tell us rheumatologists that we’re doing good and what can we do better?
BN: You mentioned the importance of telehealth in rheumatology is to respond to the sort of workforce shortages in getting the number of rheumatologists trained to respond to the demand in patients.
We witnessed a sudden and unplanned shift to telehealth this year, and through the eyes of the patient, what we were a little bit surprised about and even alarmed at CreakyJoints is how inadequately prepared people were, which is natural, right? It’s a new thing.
But one of the things we learned that was the patients weren’t always taking full advantage of the benefits of telehealth. That it is that there’s some opportunities there, which is why a project like this one is so important to help provide some guidance. Because there’s some opportunities to enhance doctor‑patient communication.
Also, one of the barriers we found was that patients were hindered by some pretty basic or avoidable technical glitches to the extent that we’re able to help smooth those over how people experience something that’s predictable. There’s a protocol or something that they can expect will happen during a telehealth visit, that will help a lot for sure. Those are kind of the broad areas that we found.
People, of course, are excited about the opportunity to interact with their doctors, but we have some work to do in terms of viewing telehealth as a true professional encounter because patients may be able to get the sense that it’s more akin to a personal or social visit since they’re more used to using those kinds of platforms like FaceTime for those kinds of encounters with family or friends.
We just have to think about how can we make it a true, optimal experience for both the patient and the doctor?
SV: Right. Thank you for sharing that.
BN: Another question, when we’re thinking about this amazing project that, it’s so needed at this time. I know it’s part of the THRIVE Study Project, a peer‑reviewed article describing telehealth and rheumatology best practices will be published.
That will be working in CreakyJoints, working with you and other experts to produce a patient‑facing training video to show rheumatoid arthritis patients how to perform a joint self‑assessment and then compare its accuracy with the gold standard, which, of course, is an in‑person clinician joint exam, the 28‑joint count and so on.
I’m wondering, though, in the meantime, until we have those resources developed as the study progresses, are there things that you recommend that rheumatologists can do now and in the short term and the near term to increase their patients’ comfort with telehealth and to have productive appointments?
SV: That’s a great question. Some of the things that we as rheumatologists can do is to explain to patients that this is a viable option, that we are honing our skills. We have gotten better than we were at the beginning. We are able to achieve a lot through telehealth.
Raising the confidence levels of patients through communication directly with them is important. Talking to staff members and explaining to them, “From a patient perspective, what are the expectations?,” and setting the expectations of what can be achieved in the telehealth encounter.
While we’re waiting for more systematic data on this particular topic, we can make some common‑sense decisions about which patients are appropriate for telehealth vs which patients are not appropriate for telehealth.
The ACR has put out a position statement on telehealth best practices. It’s not very comprehensive yet. It’s not systematic and peer reviewed, as we’re trying to do in this route, but it’s a good starting point. Other groups, such as yours, have also put out some position statements on this.
Again, we’re looking for what’s out there right now. Even though it’s not systematic, it’s usable. It does enhance the overall effect of telehealth‑delivered care in the interim until we have more robust guidance to afford our patients.
I think talking to patients, talking to staff, talking to your peers, seeing what everyone else is doing, comparing notes, using good audio and video equipment and good lighting equipment, educating patients.
What has been critical in my practice has been having a knowledgeable staff member, like a medical assistant, groom the patients beforehand and lay out the expectations and what to expect from the visit, how it might go, answer all of the patients’ questions and help them troubleshoot any of the technological issues that they might be having. I would say those are quick tips that I would like to share with the listeners.
BN: That’s super helpful. Even at CreakyJoints, some of the similar issues we’re trying to respond to, patients’ need for information and guidance quickly, even without full information.
We stood up a website called erheum.org that is intended for patients to help them get the most out of their telehealth visits. That helps walk them through preparing on the technical end and so forth to get them accommodated.
SV: I like e‑documents a lot.
BN: Thank you. What I’m excited about is our project together is going to help improve some of the resources and knowledge that we already have and hopefully build on that so there’s a more standardized experience for everyone.
With that, I would like to thank you, Dr Swamy Venuturupalli. It’s a pleasure to talk to you here in this format, and also it’s great to work with you on this project. I really appreciate your time today.
SV: Same here. I would like to thank you as well for everything that you do and for your expertise and help with this project. A huge shoutout to Dr Norman Gaylis, who’s funded this Community Practitioner Innovation grant administered and funded through the Rheumatology Research Foundation.
This is really exciting for members of the rheumatology community, particularly in practice. We see a lot of patients, we make a lot of clinical observations.
To be able to participate in high‑level research with groups such as yourself and Jeff Curtis and his group, Neil Suarez and his group, that’s quite amazing. I’m excited to be able to do this. Thank you.
BN: Likewise. Thank you.
- American College of Rheumatology Committee on Rheumatologic Care. American College of Rheumatology position statement: telemedicine. American College of Rheumatology; 2020. Accessed January 11, 2021. https://www.rheumatology.org/Portals/0/Files/Telemedicine-Position-Statement.pdf
- CreakyJoints launches eRheum.org to educate patients on getting the most from their telehealth appointment. December 4, 2020. Accessed January 11, 2021. https://creakyjoints.org/press-releases/creakyjoints-launches-erheum-org-to-educate-patients-on-getting-the-most-from-their-telehealth-appointment/