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What’s it Like to Truly Partner with Your Doctor? Shared Decision Making, with Dr Liana Fraenkel
General Education, Podcast, Provider Interviews

What’s it Like to Truly Partner with Your Doctor? Shared Decision Making, with Dr Liana Fraenkel

3 weeks ago
49 min read
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Summary:

In this episode, Cheryl Crow and Dr. Liana Fraenkel dive into the crucial concept of “Shared Decision Making” (SDM) in rheumatoid arthritis care. SDM is a collaborative approach where patients and doctors work together to develop a treatment plan. It empowers patients to express their preferences and values, while doctors listen actively and consider these when recommending treatments.

The discussion also touches on the role of education in SDM, especially when it comes to understanding the pros and cons of different medications. Cheryl and Dr. Fraenkel address medication hesitancy, highlighting research that shows how patients benefit from hearing not only from their doctors but also from others who have firsthand experience with rheumatic disease medications.

Finally, Dr. Fraenkel and Cheryl emphasize the importance of ongoing research in rheumatology and the need to strengthen the rheumatology workforce, given the current shortage. They explore the efforts of the Rheumatology Research Foundation and discuss ways for patients to get involved in supporting these vital initiatives.

Video:

Episode at a glance:

  • Shared Decision-Making (SDM) in Rheumatology: The interview highlighted the importance of SDM in the treatment of chronic rheumatic diseases, where both patients and providers actively participate in making healthcare decisions.
  • Patient-Provider Collaboration: Effective SDM requires a strong partnership between patients and providers. The interview emphasized the need for trust, open communication, and mutual respect to achieve this collaboration.
  • Challenges of Implementing SDM (Time Constraints, Health Literacy): Practical barriers such as limited consultation time and varying levels of health literacy among patients were mentioned as significant challenges in implementing SDM in clinical practice.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Dr Liana Frankl

After a 20-year career at Yale University, Dr. Fraenkel is now Director, Patient Centered Population Health Research, Berkshire Health Systems and remains Adjunct Professor of Medicine at Yale University School of Medicine. Dr. Fraenkel’s research program has focused on improving our understanding both physician and patient decision-making and on developing methods to improve the quality of decision making for patients faced with complex decisions involving multiple options. She is now focused on building a population health research program to address some of the most pressing health problems in the region. Dr. Fraenkel is a grateful recipient of funding from the RRF and prior to becoming President, enjoyed volunteering as scientific peer reviewer, member of the board, and SAC.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Full Episode Transcript:

Cheryl:  00:00

I am so excited to welcome Dr Fraenkel today, who is a rheumatologist and researcher and all. And she has lots of hats that she wears, teacher. She works at the Rheumatology Research Foundation. And so, we’re very happy — we, me, is very happy to have her. Welcome to The Arthritis Life podcast!

Dr. Liana:  00:21

Thank you so much, Cheryl. I really appreciate it. I’m excited to be chatting with you today,

Cheryl:  00:26

Yay. And I just would love to hear like a very quick, you know, just introduction, like, where do you live and what is your — I already gave it away a little bit — but what’s your relationship to arthritis?

Dr. Liana:  00:35

So, I currently live in the Berkshires, which is the Western part of Massachusetts. I’ve been here for about six years. We moved here because I think it’s probably my favorite place on earth. It’s just a beautiful, beautiful area full of culture and mountains. And I’m really blessed to be living out here. Before that, I was at Yale for 20 years, and we lived in Connecticut. And prior to that, I did my fellowship training in Boston. And before that, I was living in Montreal. I was born in Canada and lived and did my internal medicine residency training at McGill in Montreal. Yeah, so that I’ve been around the Northeast, doing the tour of the Northeast, basically. But I did my fellowship training in rheumatology, and I have been a clinical rheumatologist and did a lot of patient-oriented research in my career, and now really focused on community-based projects, and spend a good deal of time volunteering, as you said, for the Rheumatology Research Foundation, which is really one of my joys that I’ve been involved with now. 

Cheryl:  01:45

And you’re right. I’m sorry, I said you worked there. You do work, you do a lot of work, but it’s volunteer work. So, I should specify that, so it’s out of the goodness of your heart and your passion for rheumatology. And I just would love, I always want to know what made people choose rheumatology as their specialty. 

Dr. Liana:  02:06

So, that’s, you know, I think in medicine where some of us are meant to take care of people over long periods of time, and a lot of us are drawn to rheumatology because we sort of get to meet our patients. And, you know, unfortunately, many of them have to live with their illnesses for, you know, throughout their lives. And it’s really a matter of managing things over their lifetime. So, that, you know, that enables really wonderful relationships with your patients, and a gift to see them get better and, you know, maintain good health, and that’s really a gift. 

The other, I think, thing that draws people to rheumatology is it’s really a whole person specialty. So, we don’t focus necessarily on one organ like cardiologists or pulmonologists do, right? We take care of patients with illnesses that affect multiple different parts of their bodies and multiple parts of their lives, and so sometimes that poses diagnostic challenges; and frequently, you know, all sorts of treatment challenges. And it’s a very interesting field to be in. So, I think that’s, you know, different doctors have different types of personality. Some like to fix something once, other people like to be challenged with many different issues as they arise over time. And that typically would be a rheumatologist. 

Cheryl:  03:33

Yeah, I’ve noticed that that there’s a lot of real, like, cerebral, kind of intellectual, like, let’s think about what it could be. And on my second ever interview for this podcast, actually, Dr. Balderia, who’s a rheumatologist in Seattle, I asked, you know, I asked him why he chose rheumatology. And he said he liked the diagnostic dilemmas and diagnostic challenges, just like you said. I thought, well, I’m glad you do, because I don’t. No, I like the helping people live with the condition, but I feel like the diagnosis part, I feel like I would just be haunted constantly that I could would be getting it wrong, because their diagnoses are so hard, right, to make. 

Dr. Liana:  04:13

Yeah, sometimes they’re hard, you know, we joke that when the rheumatologist has been consulting a person with many different issues going on, you know, it’s a complicated situation, you know. But we describe ourselves like, you know, the House, you know, the Doctor House, or whatever his name was? So, it’s intellectually, it’s very challenging, which all of us love to learn in medicine, you know. So, it’s fun.

Cheryl:  04:35

No, I’m so glad that, yeah, there’s so many, you know, I feel like now I’m going to sound like a commercial for rheumatologists, but I feel like I’ve had such a, you know, it’s been a blessing to be able to, you know, meet so many rheumatologists through being like a patient advocate and occupational therapist as part of, like, the, you know, ACR, American College of Rheumatology and Association of Rheumatology Professionals. That’s just really, yeah, it’s been fun. 

But yeah, one of one of your specialties in your, you know, research, and I’m sure clinical work, has been shared decision making. And I don’t — my experience with a lot of patients is they don’t — a lot of people don’t know that that’s like, it sounds just like shared decision making; okay, we’re going to share a decision. But what does it actually mean?

Dr. Liana:  05:22

So, it means, it means involving patients in choosing their treatment plan. So, I remember, like, night and day, how I got interested in this. I basically was a fellow in rheumatology, and I had a Hispanic woman who had lupus nephritis. And she did not want to take what then was what all rheumatologists were recommending, and that was cyclophosphamide, which has a risk of, you know, decreasing your ability to get pregnant after treatment. And I remember talking to her about that, and, you know, the other options, which all rheumatologists consider to be far inferior options, but to her, were the preferred option.

 So, she was willing to, you know, take a risk, a higher risk, of losing her kidneys, as long as there was no threat to her fertility. Because her whole being, who she self-identified with, was being a mother. And for her, any risk to that was unacceptable. 


And it was very, very interesting to me how we sort of assume that all, that everyone has our same values. So, I became very, very interested in this, and I started collaborating with people who know how to measure preferences, which are marketing folks. And I’ve worked with marketing researchers, really, for most of my career, which has been really fun, because it’s been fun to think about what works outside of medicine and think about how to adapt it so that we can, you know, really do things differently in medicine. 

So, I learned how to ask patients about what was important to them and what were their preferences, which I’ve, you know, which are really critical for doctors to know if you’re going to actually do share decision making. 

So, shared decision making means a doctor and a patient talk together. At the end of the conversation, they reach a treatment decision together. And it absolutely requires that the patient is informed of all their options, right, not what just the doctor wants to prescribe, and that the doctor really understands what’s important to the patient, right. So, that’s kind of how it works. It does not always mean that the doctor doesn’t give their opinion. You can absolutely do shared decision making right after a patient asks, “What would you do?” There’s no problem with that, right, but I still need to know what’s important to somebody else before I tell them what I would do. 

And the other issue is, it’s not always the right way to go, right? So, shared decision making really implies that the situation has more than one option. Because if there’s not more than one option, there’s no decision, right? You just need informed consent, right. 

So, if there’s only one way to go, the patient has to, you know, consent to that. But there’s no decision making. There’s no, you know, do I want to do this or not, right? So, I want to ask you, you know, “Do you want to stop smoking, or do you want to continue smoking? Let’s talk about those two choices,” right? That’s not a shared decision making conversation. As a doctor, like, my job is to convince you to stop smoking. That’s the decision, right? How you want to stop smoking, whether you want to use a patch or a lozenge or medication, that’s shared decision making, right. 

And very similar in rheumatoid arthritis, right? If you have active disease, we now like to treat to target, really minimize inflammation, right. So, improve how you feel now and improve how you’re going to be in 10 years from now, right. So, it’s not my job to say, you know, “We could treat you or we could not treat you,” right, my job is to say we would strongly recommend that we think about treatment so we really minimize any inflammation, right. And I give you all the reasons why.

Cheryl:  09:09

And you’re talking to treatments, you’re talking about medications and pharmaceutical.

Dr. Liana:  09:13

Yes, right. So, for this —

Cheryl:  09:14

Right, yeah. Just wanted to clarify, yeah.

Dr. Liana:  09:16

A hundred percent. So, I’m not only talking pharmaceuticals. I’m talking about disease modifying, anti-rheumatic drugs which would include many of the ones everybody, like, a lot of people are familiar with, right. It could be hydroxychloroquine or methotrexate, or the newer biologics that are given by injection, or even the newer ones that are given by pill. But we’re talking here about prescription medications exactly. 

Not that diet and exercise don’t have profoundly important roles, but for this conversation, right, it would be my job to say all our studies show that the use of these medications, the appropriate use of medications, is really important. 

Now, which one you want to use is absolutely shared decision making conversation. And ultimately, it’s always a patient’s decision, right. But. How we present these things is important, because we don’t want patient, I wouldn’t want my patient to think, well, you know, starting these medications or not are equivalent options, right?

Cheryl:  10:11

Exactly, exactly. No. And I’m — I’m sorry to interrupt. I just want to make sure that, like, the primary audience of the podcast is people who have or lived experience with these conditions, whether or not some of them are also health professionals. But sometimes words like treatments, like,  I didn’t know till I was kind of in the know that that’s often when doctors are using word treatments, they’re talking about the pharmaceuticals or, I mean, you know, disease modifying, anti-rheumatic drugs.

 And I’ve joked many times on this podcast or in my social media work, that I’m like an accidental methotrexate influencer, because I didn’t know how many people were scared to take medications. And I think it may be as a function for me of being diagnosed in 2003. Not only was there not smartphones or social media, and there was no social media, there was nothing. There was like, maybe I went to yahoo.com, and maybe looked up WebMD for arthritis, rheumatoid arthritis. 

But you know, it was like this relationship, me and the doctor, and I trust you, and you’re telling me that this is the best chance for me to put my disease in remission. Of course, I’m gonna take it, you know? 

So, but now, with access to more information, more perspectives, and unfortunately, some of them are very biased perspectives. Like, you know, the “natural is better people,” you know, it can be harder. Sorry, I’m just like going on a tangent, but it’s not a tangent, it’s related to what we’re talking about. It can be harder for patients to sift through, like you said, these are not equivalent — it’s not like, these are not equivalent in terms of which options are more likely to help you long-term like the medications are. 

So, by far and away, it’s considered unethical to even do a randomized control trial without treating the control group, right? 

Dr. Liana:  11:48

As you said, without treating with the prescription medications. Correct, correct, yeah. Because without them, you can develop damage to your joints. It’s irreversible. So, putting somebody on a placebo or sugar pill for any amount of time is not ethical because we know those medications prevent you from developing joint damage that’s not reversible, yeah. But it’s not, I mean, so I you raise a really, very important point, right? 

It’s not that — and I don’t want anybody to, you know, not understand the absolute important role of other treatment options, right? You know, exercise and good nutrition and good sleep are an activity modification. All those things are, I don’t even want to say less important, they’re just as important. All these things are critically important, right? But they’re not equivalent. They’re not — one doesn’t replace the other.

Cheryl:  12:51

Yeah, yeah. My rheumatologist had a great analogy. She said, you know — and I’m an occupational therapist, my entire domain is the non-pharmaceutical, the lifestyle — but, and I agree, I really agree with her analogy here, which is that the medications, if you think about your disease activity and disease control like a thermometer, your medications are going to move it by like 10s of degrees, you know, like getting your inflammation from like a 90 on a scale of one to 100 to, you know, a 60, whereas the lifestyle variables, depending on the person, can move it by ones, you know, like you might get from like a 65 to a 61 or something like that. 

But yeah, so this is, I mean, this is, I think this is super, super crucial. But you were earlier saying about, like, I think the core of the conversation is what’s, you said, asking the patient what’s important to them. It seems so obvious on like a humanistic level, but when you have these 15-minute appointments sometimes, it can be really hard, right?

Dr. Liana:  13:52

You know what, people say that all the time. I’m gonna, I would push back. I think actually doing shared decision making can make you much more efficient, right? When you learn what’s important to people, and you answer their questions, right, it increases the likelihood you’re going to have a smooth appointment. It increases the likelihood the patient’s going to walk out of your room understanding and going to the pharmacy and filling the prescription, right? 

Otherwise, I worry that if you don’t have that kind of really good communication and understanding together, you know, I worry that patient might be nodding to me, but then I’m not sure what’s going to happen when they leave, because I know it’s hard to take medication, and I know a lot of people don’t go fill their prescriptions, or they might fill their prescriptions but not actually take the medication. 

So, I’d rather spend the time to get onto the same page, right? I get that patients spend most of their life outside of my office. And it’s, I tell them all the time, please tell me what you’re thinking, right? I’m here to help you. It’s not to help me, right? So, let’s figure out what’s best for you, right? 

And that really, that differs. And it’s our job, though, to hear people and hear where they’re at and how they conceptualize their illness, you know, so that we can help them have, you know, the best possible current and future life.

Cheryl:  15:11

Yeah, I mean, I imagine it increases your job satisfaction and the patient’s job satisfaction. I always call it a job, having and managing your illness is a job, right? It’s unpaid, an unpaid internship in managing your health. So, you know, I can definitely, I can imagine the people listening right now are like, how can I get her to be my doctor? Or, how can I get my doctor — what are some, yeah, what has your research shown about shared decision making? 

Dr. Liana:  15:43

So, you know, first of all, we, you know, so, we should acknowledge, this is not always easy for all people, right? Some people, right, expect to be involved, right. So, it’s, that’s easy. Other people are like, “Why are you asking me what’s important to me? Like, aren’t you the doctor,” right? And that requires a little bit of extra introduction, which is fine, but not everybody’s ready, right. And some of its cultural, some of its, you know, differences in generations. But you know what, we have ways of helping people understand, right? So, if a patient asked me, “Why are you asking me? Why?” I tell them like, well, it’s like you asking me whether you should have cherry or apple pie, right? You need to tell me what you like, right? 

So, we have ways to help patients get involved and have input into their treatment plan, which, by the way, actually does improve outcomes, right. The more empowered you are, you know, right? Self-management makes a difference in your outcomes. We can help them, and not in any way make them feel nervous that they’re in charge of making the right decision. That’s really important.

 So, you know, we don’t want patients to feel like, “Aren’t you the doctor? Why aren’t you telling me?” right. So, I consult with a patient who’s not feeling very comfortable about like choosing A or B, even if I say the why analogy, right. I can tell them, you know, “Listening to you and hearing what you’re telling me, it sounds like this might be the better option, and this is why.” So, then they have a chance to say to validate that, yes, this is how I would think about it. And yes, that makes sense to me. But I’m using what’s important to them to come up with my recommendation. 

The simplest thing might be, you know, how you want to take methotrexate, right? This would be really simple, right. You want to take it by pill or by injection? And if somebody just told me that they just, you know, get queasy every time they think about a pill because of all the nausea they’ve had with other pills, I would be able to tell them, “Well, it sounds to me like you might actually prefer to start with the injection,” which would be absolutely fine, right. So, there’s ways to, I think, address people where they are. And for some people, it’s intuitive why you’re asking me. And for some people, it’s not intuitive.

Cheryl:  17:58

I think you’ve had something huge, which, as somebody myself living with anxiety, I do remember a couple times in my patient journey where my doctor has been, “What do you want to do?” And I’m like that introduces anxiety on my heart. If I’m not clear, if it’s not really clear, what the next best step is. Like, 

I remember when I was pregnant, this was 2013, we had talked a lot about planning the pregnancy. I know I got off methotrexate. Everything was going according to schedule, but then there were, at that time — this is over 10 years ago —different or a lack of good data about how long to stay on the biologics. I was on Remicade. 

Now, there’s a lot better data and more recommendations, but I remember her saying, okay, there’s pros and cons of, you know, this versus that, for staying on it for the first trimester or staying on it the whole time. And I remember her being, “So, what do you want to do?” And I was like, “Aah, I don’t know!” Like, I think there is, there’s a couple pronged approach I guess you’d have to take. Because, on the one hand, I think any patient living with a rheumatic disease at some point is going to confront an ambiguity, right? Where, like, even if you have your best evidence-based guideline, you don’t know for 100% sure, right, whether someone’s going to work. 

So, we have to build the skill of tolerating the gray areas, which is hard, and then also say, like you mentioned, I almost think of a scaffolding, like what a parent does to with a young child, like you kind of provide the scaffold for them to explore their environment, like in the case of you as the doctor and the patient, it’s like you’re providing that scaffolding of like, okay, here’s the pros and cons of each. 

Dr. Liana:  19:37

Yeah. And we can also — it’s overwhelming, like you said, there’s so much information out there — but the other thing is, we can also simplify it, right? I mean, there’s certain things that if things are common to all your choices, you don’t have to think about it. If you’re choosing between two different biologics, well, you don’t have to think about the risk of infection. That’s there with all of them. Like, what are the things that differentiate one from another. What is, and of those things, what’s most important to you, right? 

And so, we can, we can distill down to really, the critical things that are going to influence your choice and help sort of — not that the other information isn’t important, but you don’t have to deliberate over it, because it’s common to all your choices. So, we can, that’s also our job, right? 

It’s not just to say, “What’s important to you, what do you prefer?” It’s, let’s first review all the options, which is actually, in itself, extremely embarrassing, because many, many times when you know, patients are never given a choice, they’re saying, “Okay, let’s try this next,” they’re not even aware of all their choices. 

So, I think just realizing that there are options makes people feel more empowered. It’s more obvious now why I need to learn about all these things. But then we just, you know, we don’t say, “Go read about this, come back and tell me what you want.” That’s not shared decision making. There’s a there was a whole series published in the New York Times about this and was like, my heart was breaking. I was like, no, that’s not what we should be doing. You know, we’re there to help patients, you know, distill and learn about what are the things that really differentiate these options. Not just to hand this, it’s not handing over the responsibility to the patient. It’s working with them.

Cheryl:  21:17

No, yeah, having a real conversation, that makes perfect sense to me. What are some of the, I guess, frequently asked questions or frequently asked topics, I’m assuming, like, you know, concern about side effects, or being immunosuppressed, or are those kind of the — or what are some of the frequently asked questions patients have?

Dr. Liana:  21:37

Concerns about medications. Concerns about prescription medications. You hit them all. So, number — oh, this is easy. This happens all the time. So, there are patients who, just in general, do not like taking any medications and would prefer a non-pharmacologic approach to everything; not just rheumatic illness, everything. And it’s a health belief, you know. I’d like to say that I’m not any different, you know, I have bottles of vitamin D all over my house. I never take it. So, I get it, like, you know, I get it. It’s not an easy thing to do, right. And, but there’s that’s really important, because it makes no sense for me to say, “Do you want medication A or B?” If, in your mind, you don’t want a medication. Like, we need to address that. 


That’s why these conversations are so important. Like, we need to address that. And I need to be able to change a patient’s readiness to take a medication before I think about A versus B. Otherwise, I’m like talking up here, they’re down here, and it’s lousy, lousy, it’s a lousy visit, right. But there, but that’s really important. That’s what we’re here to do. We are here to really explain things, explain why it’s so obvious to a doctor that you should be taking medication, but it might not be to a patient. The other really important thing is understanding how the medications work, and probably most importantly, that there are side effects to untreated disease.

Cheryl:  23:10

That’s my point that I try to make on social media when I’m correcting people on the Internet, which I don’t recommend as a life hobby, but, yeah.

Dr. Liana:  23:21

Yeah, no, but you know, understanding that living with chronic inflammation is very bad for you, and also to bring up the things that we know but our patients might not know, right. It might be okay for you to get a joint deformity, that might not be important to you, right, whereas for other people, any joint damage is very important. But to most people having a heart attack or stroke is very important. And understanding the other long-term complications of living with inflammation, you know, is really important, you know. 

And then, basically discussing how the medications work, that we’re really trying to improve the function of your immune system, as opposed to suppress your immune system. We’re not trying to get people to live in a bubble, right? That’s not the aim. The aim is to get too much activity down to a more normal level of activity. And honestly, the other thing that scares people is, like, the long-term commitment, you know, being on these medications necessarily forever. And I found it actually very, very helpful to take a baby step. Like, we can always try things for a short term and see how you do. And the vast majority of people, once you start something, and you realize it’s not scary, and you realize you’re feeling better, and you have more energy, and you feel healthier, right, you know, ideally, you’re going to come back to me and say, at one point, you feel normal or close to normal, right. Then it’s less scary, because you realize you’re not sick anymore. And I think the buy in then after to engage in treatment is easier.

Cheryl:  24:55

Yeah, something Dr. Christine Stamatos said — so she’s a practitioner, but she has a DNP, so I don’t know what to call her — but she’s a, she’s awesome. I’m sure you know her. She said, “I tell my patients who are concerned about medication, think of it as like dating, not a marriage.”


Dr. Liana:  25:14

Exactly the same story. 

Cheryl:  25:15

They’re gonna be out of your system in a little bit. And, yeah, I really found, as a person living very publicly with my condition with rheumatoid arthritis for the last 10 years of my 20 years having it, that’s been really interesting to me to see the different perspectives. Because again, when I, when I chose medicated, it was, for me, it was a very simple decision. Now, I will say, my mom told me later on — actually, on Episode 100 of this very podcast, I have my parents on for Episode 100 — she said, you know, I didn’t know about this conversation, but so I got diagnosed the year before my senior year of college, right? So, I was going to Vassar College, flying all the way from Seattle to New York, I had gotten really sick. Didn’t know what’s going on. Finally got this diagnosis. I thought, great, we’re gonna go on Enbrel and methotrexate. We gotta refrigerate this medicine. Okay. 

Like, the concerns my mom had, or she said, “Well, this sounds like a lot of work. We’re gonna have to get her, like, a special fridge for the medicines. And, like, it’s really expensive. Like, can we just wait a year,” you know? Which, to the person not in the know, is, like, you know, oh God, why not? I mean, she’s gonna have this the rest of her life, just wait a year to start. And they said, “In one year she could be,” again, I had no idea this conversation happened, they said, like, “In one year she could be in a wheelchair,” like how severe my numbers were, how fast they had gotten that bad. And I, you know, had severe rheumatoid cachexia. I was, like, from 135 pounds to 102 pounds, like I went from so functional and so healthy to so sick. And so, anyway, so that’s what convinced her, and I think her certainty bled into me, but sorry, that’s my — I always love to sprinkle in my life story.

Dr. Liana:  26:55

But yeah, no important, but yeah, I’m glad you raised that, right. So, delay of a year, we don’t delay at all.

Cheryl:  27:02

No, and I mean, I was lucky back then. There was no insurance delay, no insurance delay for Enbrel because it was before they started having those barriers. But one thing that I was going to mention that relates to some of the research that you’ve overseen is the impact, the positive impact. So, you’re talking about, okay, the decision to medicate or not, we’re like zoning in on this as part of shared decision making, it can be positively influenced by the doctor conversation in the room. And I know your research has found it can be positively influence by a curated set of patient stories and patient videos, which I’ve accidentally done on social media. But yeah, tell me more about that. 

Dr. Liana:  27:47

Yeah. So, you know, as you’re saying, so this is not necessarily part of the shared decision making conversation, right? This is the decisions where, really, there is a clear path forward in terms of improvement of health, which is to start the prescription medications for rheumatoid arthritis. That clearly is really important for your health. But we know that this is still very, very difficult for patients. So, Dr. Betty Hsiao and I did a research project really taking a big step back and started by interviewing patients to learn what their mental models are. You know, we know what the physician, the rheumatologist, mental model is easy. You have active rheumatoid arthritis, you start a medication, or you increase the dose of medication, you switch a medication to minimize inflammation. End of discussion. For patients, however, clearly something else is going on, right? So, trying to understand how they think about this is basically what we’re talking about when we think about the mental model. All the things that are going in your head based on your culture, and your education, your background, and what your grandmother is telling you, and what you’ve seen on social media, etc., how do you think about this. 

And so, we learned from patients, and we learned a lot, but one of the things that struck me that was so interesting is we had a group of patients, not all, but for some, and it was for some who are hesitant about making changes, and that’s the target audience, right. We want to take the people who are hesitant to get them to move ahead so they don’t have delay in treatment. We basically heard from them that they said, well, they need, first of all, they need information, which was actually great news, right. But they need information that a rheumatologist cannot give them. Which was very humbling to me and very important for me to hear about, right. They said, the rheumatologist is the person they need to hear about in terms of the medical facts, the science, right. They want to know from them what is the science? What are the medical facts? What do I need to know? That is the person who they want. That’s a source of information they want to hear that from, okay. 

But then, when they’re thinking about a medication, or A or B, or any medication, they also want to know, what is life like on this medication? Basically, that’s what they want to know. What is my life going to be like on this medication? That means all the things you’re thinking about, you know, the burden of taking the medication, the nuisance stuff associated with the medication, the side effects that might be reversible and not too bothersome, the very bothersome, am I going to need to worry about monitoring — all the stuff that, as a doctor, I’m not living. I’m not a patient living on this medication. I really, I can tell you what the risks are in terms of science and the probabilities and the numbers. I can tell you how to monitor. I can tell you what we do if that happens, but I can’t tell you what it feels like to live on that medication, and how you might feel at the beginning, and how you might feel after a while, like, I have no idea. 

So, that was — it was a really enough for us that for a group of patients to be able to move ahead and feel comfortable starting something, they need two separate sources of information from two separate experts. The science expert is the doctor, and the disease experience expert is the patient. And that’s who they would like to hear from. And I have no business giving them that information. So, what we did is we took basically our initial step, which was hearing from people who are living with rheumatoid arthritis, and we went to a very diverse group of patients, and we presented them with different scenarios where patients struggle to basically give them that source of information that patients would be able to access depending on what information they needed, so that they hopefully would be able to get those two sources of information. 

Because, as you said, the big risk otherwise is a reliable source of information, right. We don’t have that as doctors. Now, I couldn’t say this, you know, this is a place you can go to get, you know, to learn from other patients there. It doesn’t exist. So, this gave us basically a way to do this in a scientific, rigorous way based on what we heard from patients, using a real scientific model to have a curated set, not a biased set, but a curated set of videos based on the questions that patients told us that were most important for them to learn about. So, that project is still ongoing. We’re figuring out now how to implement that in clinical practice so that rheumatologists will refer their patients to those videos, and then hopefully we can see if it makes a difference.

Cheryl:  32:35

Yeah, and was that in conjunction with Global Healthy Living Foundation or Creaky Joints? Yeah.

Dr. Liana:  32:41

Yeah. So, we worked with them at every stage, actually, of development. We worked for them at the initial stages when we were interviewing patients and then to develop the videos. They’ve been wonderful partners on our research projects.

Cheryl:  32:53

That’s amazing. And I always, I just try to, like, disclose any relationships I have. I didn’t honestly know that when I learned about your research at the Rheumatology Research Foundation Investigators meeting, but I do have a contract with Global Healthy Living to help them make short form social media videos. But, yeah, they’re a great nonprofit. And I think that that’s, you know, the takeaway I got, and let me know if I’m wrong, but from listening to to you right now and your research, is so huge that you’re honoring the patient experience, right. And the fact that not every patient, but a certain group of patients, really want to learn from others, and that is, like I mentioned, like, I’m kind of organically doing this on social media through providing my own story. 

But the problem with social media is that there is no external curator or quality control person. I am held — I hold myself to my own ethical standards and provide citations and stuff. But the algorithms are not prioritizing accuracy of information. They’re prioritizing what people are talking about the most. And you know, the stuff the algorithms show me is like, cherry juice, drink tart cherry juice, and that, you know, it’s gonna cure your arthritis. So, I think this is so crucial to provide this. And I just made a video that a friend of mine got diagnosed with scleroderma, and her doctor was like, “I don’t want you to look this up online. Don’t Google it, because you’re just going to get scared.” And was just like, bye. Like, she’s like, in the year 2024, to say that it’s just —

Dr. Liana:  34:31

Not helpful. That’s not possible, and it’s not helpful. Yeah, no, yeah, I agree. And I should, I should also just, you know, mention that, along with this research and also several projects where we developed shared decision making tools, because those are always better than not having a tool, have been founded by the research, the Rheumatology Research Foundation, so it’s a shout out to them for funding such patient-centered research, right. That’s really important to patients. It’s hard to get funded by other organizations. So, that’s been, you know, hugely important to my career.

Cheryl:  35:06

Yeah, that’s, that’s phenomenal. Actually, that leads to the next topic I wanted to bring up, which is what the Rheumatology Research Foundation does. Because, you know, honestly, it wasn’t something I knew a lot about. I think, certain, like patient-centered, you know, organizations like Arthritis Foundation and Creaky Joints and The Autoimmune Association, we patients hear about those, that the Rheumatology Research Foundation, we may not kind of come across it. So, can you just give a brief, I guess, what would you call it, I’m thinking, like, I was thinking like elevator speech. So, what does the Rheumatology Research Foundation do? Yeah.

Dr. Liana:  35:44

Yeah, so the Foundation, really what its mission is, is to ensure that patients are going to have access to the best care possible for now and for the future. So, what does that mean? It means having extremely well trained rheumatologists. So, the Foundation funds fellowship training and is expanding the number of fellowship slots actually now available, including in underserved areas, which is fantastic. And they also fund other not just rheumatologists, but also, as you mentioned before, advanced practice nurses and PAs, right, because we recognize that we all work in a team, and we really need to, you know, ensure that we have access with a shortage of rheumatologists as well as other doctors. So, they’re very involved in really thinking forward about making sure our patients have access to the care they need. 

And having access to good care also means that we have access to the best information and science available. So, the Foundation training, you know, provides training grants and research grants at all levels of our careers. So, from medical students and even now earlier, because we’re trying to attract people to the field as early as possible, all the way up to senior investigators. So, we support people early in their career to enable them to then become what we call independent investigators, applying for their own grants and doing, you know, really innovative type of research to make sure that we keep coming up with really wonderful treatment options and cures for our patients. 

And they are right now really a critical resource. Because, as we all know, the NIH, which is the National Institutes of Health, which funds most of the research in the United States, really is not funded well enough to support all the training and research that is needed in rheumatology. So, the Foundation plays really a critical, critical role in training future rheumatologists and making sure that we are in a position that we keep, you know, generating really important and innovative research, so that we come up with really important discoveries that are going to continue to improve the options for our patients. I mean, people are now feeling, you know what the benefits are of biologics? I mean, rheumatology is completely different than when I started practicing years ago. And it’s not just for rheumatoid arthritis. I think, you know, we’re seeing new drugs in lupus, new drugs in scleroderma. It’s an amazing time. But we, you know, we just, we need to invest in our future, and the Foundation is just a wonderful way to do that.

Cheryl:  38:26

Yeah, I second all. Then I think sometimes we think of, you know, oh, the pharmaceutical companies are the ones that are developing all the new medications, right? But it also is, it’s like this giant group effort between, you know, these PhD researchers, these clinical practitioners that also do research, and maybe people who work for the pharmaceutical company. There’s just, you know, there’s a huge amount of research that goes into finding out what does and what doesn’t work. Sometimes you find out, you find a research study, and it’s like, oh, shoot, you know, we really thought that was going to work in lupus, and it didn’t work. But, you know, and we just do the best we can. 

And you also mentioned that, I think it’s really important, the shortage of rheumatologists. I hear this a lot in the support groups that I run, that people are like, “I got diagnosed by my primary, or a preliminary diagnosis by my primary care, and I have to wait like six months to see a rheumatologist,” and that simmering of you know, you can’t even have that shared decision making conversation yet, you know, because you haven’t even seen a rheumatologist. And so, I heard that rheumatologists are the lowest paid specialists. Is that still true? Sorry if that’s —

Dr. Liana:  39:38

So, you know, I’m not — I don’t know. So, and I don’t think so. I can tell you, there’s concerns about the specialties that don’t do a lot of high-risk procedures, like rheumatologists or endocrinologists. Certainly, this is a big problem in all of pediatrics, both general pediatricians as well specialists. So, there’s really an ongoing effort to make sure that people are able to stay in practice right with the changing reimbursement codes, etc. But we need to really devote all the effort we can to, as you’re saying, staying, you know, staying at home worrying for six months really is just not acceptable, you know. 

So, there’s also, there’s many, many things being considered, you know, not only the training slots for fellowships, but also empowering other members of the team, as you said, but also education of primary care doctors, right. So that they can work collaboratively with a rheumatologist so that we use, we really use everybody’s expertise to, you know, to the best way that we can, so that, again, people are just not waiting for six months, right. So, efforts like that really improve access, and improve follow up within the constraints of the system, is what everybody’s working on. And I think we’re just, we’re not relying on just training more docs, because that’s just not going to ever fill the gap. 

Cheryl:  41:11

That’s not. That’s a great point. And you are the President of the board, by the way, very excitingly so. And it is a nonprofit, so people can go to, you know, rheumresearch.org, and if you feel so inspired by our conversation or the work that you see on the website, you are welcome to to donate there. I know we have a lot of us, unfortunately, are, you know, don’t — a lot of people don’t have a ton of extra cash lying around. But you know, it is an, in a way, it’s an investment, you know, in your future as a patient, right, to say, like, I’m going to, I want to donate to these people that are trying to find better treatments, better cures, you know, whether that’s through the Rheumatology Research Foundation, Arthritis Foundation, there’s so many places so you could do that. 

But I think it’s a very empowering step to even just become involved in a foundation and the Rheum, I will quickly say, the reason I met you in person in Denver in the Spring was that I was invited as a patient Rheum Champion through the Rheumatology Research Foundation. So, they brought like six patients there to help, you know, not just learn about the research that was going on, but also spread the word. And so, that’s been a really empowering experience as well. So, it’s something that anyone can apply to be, apply to be a Rheum Champion. So, I’ll put a link there. Any patient can to share your story if you’re interested. Yay. 

Dr. Liana:  42:37

Yeah. It’s wonderful. It’s been, you know, a really wonderful initiative this came out of also the efforts of the Rheum Lab, which is part of our Foundation, which is also a very patient facing resource. But I think you saw, Cheryl, that the having you there, as well as several other patients, added a tremendous amount of value to our meeting. The researchers gained a lot from hearing the patient perspective for their current and future research. So, it is a win-win situation. It was really a wonderful partnership, and we’re excited about continuing that in the future. 

Cheryl:  43:17

Yay. Thank you. And as we’re kind of getting to the rapid-fire part, well, I’m going to ask you questions that I’ve decided are rapid-fire, but they’re really potentially hour-long discussions on their own. But what is some of your best advice for a newly diagnosed patient with inflammatory arthritis?

Dr. Liana:  43:36

Find yourself a rheumatologist that you’re comfortable talking with, and get there as quickly as you can. Do not postpone. Don’t put your head in the sand. In the long-term, that’s not going to help. And be hopeful, because this is a time where there are many, many options available. And while things are very scary at the beginning, we all adapt over time, things are going to be okay.

Cheryl:  44:04

I love that. And you saying ‘Don’t put your head in the sand’ reminded me of one of the comments I get sometimes on my video. So, honestly, I have these grand ideas for my videos that I do. And when I first did videos on methotrexate, they were literally in my head, like, this is just a low hanging fruit. Like, I’m just going to show you how I do my injection, or when I was on Orencia, here’s how I do my own injection. When I was on Remicade, this is me getting a Remicade infusion. You know, I’m on Actemra, this is me giving myself an Actemra. You know, I’m just literally thinking, this is, like, the most boring, straightforward video, but like, maybe five people are going to want to watch it. Well, then people, they’ve said, they’re like, I’m literally sitting at home. I have this in this syringe. I’m petrified to give myself this injection, or I don’t want to do it, because I know that’s going to make it real. But just seeing — this is not like an advertisement for myself, by the way. But I’m trying to say like it’s amazing to see the power of, back to our point, of knowing that someone else has done this before you. And I’ve been doing this for, in my case, for over 20 years, and that is helping me, right. 

So, I wish I could say, like, okay, I can take, like, clone myself at age 21 when I was diagnosed, and have the one version of me that never did anything to, like, never took medication, and to see that side-by-side comparison, because I’ll say, well, how — well, I don’t know how my disease would have progressed, other than just based on my doctor’s prognosis at the time, which was really bad, you know, moderate to severe. I actually had asked her the other day after 20 years, like, am I still considered moderate to severe, even though the treatments have worked? Do you know what I mean? Like, I don’t have severe deformities. I have, I do have some deformities on my toes and my thumb. But she’s like, yeah, technically, like, that follows you like that, I guess. I was like, oh, okay. 

Anyway, so the commercials are talking to me, do you have moderate to severe —? But point being, yeah, like, do whatever it takes, whether that’s looking at other patients’ stories or talking to your doctor, or, you know, listening to podcasts, or whatever it is to confront this is happening. This has happened to you, like, you have this disease, and the more that you try to deny it, it’s just going to actually, not only is going to hurt more in the end, it’s physically going to hurt more in the end. But yeah, okay, little soapbox. Okay. What does it mean to you to live a good life and thrive with rheumatic disease? I guess what does it mean to when you’re thinking about that concept in terms of your patients.

Dr. Liana:  46:28

It would mean for them to have the best possible life that they can have, right. That’s going to totally differ for different people. For some people, it means being able to ski. For other people, it means being able to have a job that they can get up and move around in. You know, for other people, it means, like you being able to travel. Can they get their medications on their plane? It’s really going to depend. But it means living with their illness. That’s not going to go away. But having the best and most rewarding life they can living with their illness, which they can do.

Cheryl:  47:07

I love that. Yeah, I remember when we were talking about this with — oh, my gosh, who were we talking to? — at the at the conference, and there, I was saying, well, you know, yeah, we have it until there’s a cure. I don’t want to discount the fact that there’s probably going to be a cure potentially in my lifetime. I mean, three of my four grandparents lived till 94, so even if my life span’s a little bit lower because of RA, it’s still pretty long. But, you know, Dr. Michaud, Dr. Kaleb —


Dr. Liana:  47:40

Yes, Michaud. 

Cheryl:  47:41

Michaud, sorry. And he was like, but you’re still gonna live with effects of it, even if it’s cured. And I was like, okay, thank you for the truth bomb. That’s true. You’re right, you’re right. But I love that. Yeah, it’s very congruent with occupational therapy, you know, that you’re saying, what matters to you? You know, there used to be a tagline for the OT Association. We don’t ask, ‘What’s the matter with you?’ We ask, ‘What matters to you?’ That’s really true.

Dr. Liana:  48:05

And working with what you have. The same thing. I was an occupational therapist, too, before medicine. Yeah. So, I, you know, it’s, you know, if you need to, like, you know, build a bigger hand grip, right, then you can do what you have to do, fine, right? You know, so we can do multiple things to sort of make the best of things.

Cheryl:  48:24

Exactly. I love it. And I think, yeah, definitely, I, as an occupational therapist, can definitely feel your foundation of occupational therapy in the way you see the world, which is wonderful. They call them the OT glasses. I don’t know if they did when you were in school, but yeah, is there anything else you wanted to share with the audience? I’m sorry, kind of went on a few different directions. So, if there was, there any thoughts that I —

Dr. Liana:  48:47

No, I, you know, I would just let people to know, like, people know that, you know, I know out there it’s kind of tough with a shortage of rheumatologists, but that they’re, you know, the advancements in science going on now are incredibly exciting. And, you know, again, it used to take how many years to develop a thing new, right? Everything is exponential now, and I would really be hopeful, you know, that things are just going to continue to get better and better. 

Cheryl:  49:19

Wow, no, that’s really, really, that’s really incredible. Is like, artificial intelligence part of that, or is it was already happening before AI? Sorry.

Dr. Liana:  49:29

It was happening before AI. So, science, I mean, you know, science, again, just medicine, changes used to happen incrementally over time. Now it’s like, every five seconds. It’s so hard to keep up, which is very exciting. AI will only expedite that. So, this was definitely happening before. We’re just so much smarter about all things in medicine, but particularly about the immune system, than we used to be. And AI will just, you know, further hasten the process. So, you know, there’s, it’s definitely a very good time to be very hopeful in terms of sort of exactly what you said, you know, hoping for cures, and hoping for us to be able to predict who’s going to respond to what medication. Even thinking about osteoarthritis, we’re hoping one day we’re hoping one day we’re going to have a good treatment for osteoarthritis. So, it is, yeah, very exciting. There’s a lot of wonderful advances going on in medicine. 

Cheryl:  50:30

Well, that’s very exciting. And I know you’re extremely busy, so we really appreciate taking the time to chat with me today. I know you’re not on social media. Usually, we share social media links at the end, but they can find, they can find your more information on rheumlab.org, from the Foundation, which is awesome, and I’m going to link in the show notes to some of your publications, which hopefully will be very helpful to people. So, thank you so much.

Dr. Liana:  50:57

It’s been a total pleasure. Thank you. 

Cheryl:  51:00

Yay. Talk to you later, bye-bye.

Dr. Liana:  51:01

Take care now, bye-bye.

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