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How to get Your Voice Heard to Improve Healthcare

December 3, 2020
48 min read
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In Episode 20 of the Arthritis Life Podcast, Jen Horonjeff shares how her journey with juvenile idiopathic arthritis led her to advocate for the patient voice to be prioritized in health innovations. She also shares her journey growing up with juvenile idiopathic arthritis, pursuing a phd and eventually co-founding Savvy-Coop.

Jen dives deep into how and why she co-founded Savvy-Co-op, whose mission is to empower patients to co-create new solutions alongside health innovators. This includes a discussion of her PhD studies in human factors. 

Jen walks us through what it’s like for a patient to get their voice heard and provide feedback to healthcare companies and health innovators through Savvy, all while being monetarily compensated for their time. 

She also explains why it’s crucial for health innovators to seek diverse patient voices. 

Cheryl and Jen also discuss the importance of quality of life (QOL) measures as part of patient-reported outcomes (PROs).

The episode ends with a summary of Jen’s life experiences as a young person with juvenile idiopathic arthritis, and her advice for newly diagnosed patients today.

Speaker bios:

Jen Horonjeff was diagnosed with juvenile arthritis as an infant and now has a laundry list of other conditions and surprises (like a brain tumor). She is passionate about elevating and valuing the patient voice, and went on to become a health outcomes researcher, human factors engineer, FDA Consumer Representative, and, most importantly, a patient advocate. Jen earned a PhD in Environmental Medicine from NYU, and studies patient-centered outcomes at Columbia University Medical Center. 

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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. 

Episode links:

Here’s the show breakdown:

  • 1:00 – Jen’s experience getting a phD in Human Factors, accessibility, and patient centered outcomes while balancing her Juvenile Idiopathic Arthritis (JIA). 
  • 4:50 – How Jen formed Savvy Co-op: a patient owned, public benefit co-op that connects health innovators with patients to provide feedback, where patients are co-owners of the company and are often compensated for their time and expertise.
  • 8:00 – Why is it important for health organizations to not only get patient feedback, but also seek diverse patient voices.
  • 10:50 – Jen walks us through what it’s like for a patient to get their voice heard and provide feedback to healthcare companies and health innovators through Savvy, all while being monetarily compensated for their time. 
  • 15:20 – Why it’s important to follow up with the patient after they complete their “gig,” and let the patient know how their voice had an impact.
  • 17:00 – What does “patients are the expert in their care” mean, and what does  “patient centered care” mean?
  • 18:15 – An example of the patient voice changing health systems: patient feedback about the importance of fatigue led to it being incorporated as a “clinical trial outcome set,” or something that’s measured. 
  •  21:50: Jen’s experience serving on the FDA’s Arthritis Advisory Committee, and explanation of why quality of life (QOL) measures are so important. 
  • 25:15 – Chery’s quick plug for occupational therapy in helping patients achieve the best quality of life possible.
  • 26:15 – Are the current quality of life measures still relevant today, and are they sensitive enough to measure what’s truly important to patients?
  • 31:15 – Issues with patient reported outcomes are not specific to rheumatology, they are common across health conditions; Jen’s example: cystic fibrosis. 
  • 32:30 – Cheryl discusses the difference between basic “activities of daily living” (like dressing oneself) and “instrumental activities of daily living” (more time-consuming and cognitively challenging tasks like caring for children, preparing meals, managing finances). 
  • 33:30 – Jen’s personal journey with juvenile idiopathic arthritis (JIA): from gold shots in the 1980s and being told to avoid movement and exercise, to a dance major in college. 
  • 37:25 – Jen’s advice to parents of children with JIA 
  • 38:25 – Why Jen feels her disease DOES define her. 
  • 41:10 – Jen’s message for newly diagnosed patients: take time to reflect and grieve, acknowledge that this will suck sometimes, then try to step back and see that there are still probably ways to get to where you want to go. 
  • 43:00 – where you can follow Jen and Savvy (+ Jen’s cat as a bonus!).

Full Transcript:

[00:00:00] Cheryl:
[Introductory note]

Hi there! I’m so excited to welcome you to The Arthritis Life podcast where we share arthritis life stories and tips for thriving with autoimmune arthritis. My name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis beyond joint pain. I’ve been living with rheumatoid arthritis for 20 years and I’m also a mom, occupational therapist, video creator, support group leader, and I created the Rheum to THRIVE self-management program. 

I am so excited to help you live a more empowered life with arthritis. We’re going to cover everything from kitchen life hacks, to navigating the healthcare system, to coping with friends who just don’t get it. Seriously, no topic is going to be off limits on this podcast. My interviewees and I share our honest stories of how chronic illness affects our lives. This includes discussions about mental health, sex, shame, pregnancy, body image, advocacy, self-acceptance, and so much more. You’ll hear stories from all ends of the spectrum from a person who’s living in medicated remission from psoriatic arthritis to somebody living with severe mobility restrictions and severe pain from rheumatoid arthritis. 

You’ll hear how people manage their conditions in different ways like medications, mindfulness, movement, social support, work accommodations, and so much more. You’ll also hear from rheumatology experts who just get it. We’ll dive deep into the science behind chronic pain and what’s the latest evidence for lifestyle changes that can help you thrive with arthritis, including exercise, sleep, nutrition, stress reduction, and more. This is your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.   

Hi, my name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say, “You don’t look sick.” Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness – no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.

Hi everyone. I’m so excited to have Jen Horonjeff today from Savvy Co-Op, and she is going to tell us all about why we should ask patients before thinking of solutions that benefit patients. Sounds obvious, but unfortunately it is not to a lot of people in the medical system. So, hi Jen!

[00:03:00] Jen:

Hi. Thanks so much for having me. 

[00:03:03] Cheryl:

Yeah, thank you for coming. I know you have a really busy schedule, so let’s just start with the basic introduction. Can you tell us a little bit about yourself and what’s your relationship to arthritis? 

[00:03:13] Jen:
Yeah, well, that’s first and foremost, I am a patient. So, I was diagnosed as an infant with juvenile idiopathic arthritis, along with several other related autoimmune diseases, which perhaps your listeners are well aware of. Things like Sjögren’s syndrome, and ankylosing spondylitis, and fibromyalgia, and Raynaud’s and uveitis. That’s a big one for me. All that kind of good stuff. So, I am fully ingrained in the arthritis space with my own lived experiences. And then, I went on to go work in healthcare and specifically in rheumatology from the very beginning of my career.

[00:03:46] Cheryl:
That’s incredible. And yeah, one thing that’s unique about you is that you have your PhD, which is a huge accomplishment. And I know a lot of people listening are also thinking about career paths, and what was it like to get to balance getting your PhD while balancing your chronic illnesses? 

[00:04:05] Jen:
Well, getting a PhD is horrible regardless of any sort of chronic illness. At least that was my personal experience. Shout out to my advisors if they are listening, who made my life very special for many years. No, it’s something, just as you pursue anything, be it higher education or any different type of career that you may be having, it’s just trying to understand the goals that you have personally. And then, ideally you’re able to just figure out how to get there. It just might look differently. I think that’s my sort of big takeaway for people that are looking to pursue their dreams. I fully believe that you should be able to, it’s just that it might not look the same as like a peer that’s trying to pursue the same path because you need to account for other things like rest and taking it at your own pace. So, it’s tough, but the best advice I could give is just not to compare yourself to those around you and just chart your own path. 

[00:05:04] Cheryl:
That is such wise advice. I love that. And what is your PhD in again? 

[00:05:10] Jen:
Well, it’s a mouthful and doesn’t necessarily make sense. It’s technically in environmental medicine. But what I was studying and my background, my master’s was in ergonomics and biomechanics. So, human factors is really what I was studying. And I was drawn to that because of having arthritis. And human factors is the science of trying to fit the world to the person as opposed to the other way around of like people, especially those with arthritis, just like trying to live their life for people in a world that was not designed for people with arthritis. And so, that, to me, was really frustrating as a patient with arthritis. And so, that was why I was drawn to human factors and trying to make the world more accessible for those people that maybe have limited mobility, or impairments, or just different mobility needs. 

And then, environmental medicine builds upon that. And what I was studying is known as patient-centered outcomes. Which means what matters to patients — which is obviously as we as patients know that — what our doctors care about, what insurance companies care about. All of these things may differ wildly from what the patient cares about. And so, we have to take the time to understand what patients care about, what their priorities and preferences are, so that we can develop new therapies, new drugs, new solutions to help meet their needs. So, that’s what I was doing in my academia. 

[00:06:34] Cheryl:
Let’s talk a little bit about, yeah, how you formed Savvy Co-Ops. So, you went from this, you know, academia sometimes is a little out of touch with the real world, but you were actually able to apply your PhD research and passion and everything you learned there into the formation, it sounds like, of Savvy. But for — I guess I’m jumping ahead of myself. So, what is Savvy Co-op? 

[00:06:57] Jen:
You got it. So, well, Savvy is a patient-owned public benefit co-op. Which I know is a mouthful, but that means that we are collectively owned by patients. So, it’s a little bit different than your typical patient advocacy organization, which is usually a 501(c)(3) non-profit. It’s different from your typical corporation, like an Amazon or whatnot, which is a different type of incorporation. A co-op is that. It’s a co-op, it’s its own structure, which means that it’s owned by its members. And the reason why started as a cooperative is because what we do as a company is we help to connect companies and innovators and researchers connect directly with the patients or caregivers they’re trying to build for. 

So, if somebody is building a new — I’ll give you a hypothetical example, but it’s a real one — that if somebody was building, say, a new biological syringe or an autoinjector, why don’t we actually get people with arthritis or Crohn’s Disease or ulcerative colitis or MS who might use this to give feedback on it prior to making it? So that then, when you get it and you’re like, “Cool, I can’t even open the package,” like, we should be doing that work upfront. And so, that’s what Savvy does across all different conditions to say, “Hey, innovators, before you build something, let’s go talk to patients. Hey, innovators, while you’re building it, let’s go talk to patients.” 

And, oh, you’re gonna do some marketing campaigns? Well, let’s talk to patients then. So, we’re trying to make it super easy and accessible for these companies or innovators to talk to patients at every juncture. And so, where the co-op ties back in is if you think about it, it’s really, it’s all the patients that are doing the work behind Savvy. So, that’s why we wanted to make sure that they could become co-owners of our organization so that they get to have a say in what we do and they actually earn dividends. They’re gonna share in our profits as Savvy grows.

[00:08:58] Cheryl:
That’s really incredible. And I know one of your mottoes is ‘Ask patients’, which I love that. You’re, as a patient, again, it seems like, wait a minute, this should be obvious. Like, why does somebody need to advocate for this? But, as your experience has shown, that sometimes people get their, you know, they get in their little silos or maybe they’re thinking about their own profit motives or something else, and they’re not necessarily thinking, is this actually going to be useful? The example of the syringes is a perfect one. Or there’s so many memes online of, like, I can’t open the medication container for the medicine that would solve the problem of why I can’t open it, you know?

And I know that, when you spoke at the American College of Rheumatology or American Alliance of Rheumatology Professionals Conference, a couple weeks ago, I loved hearing you talk about it’s not enough just to try to get maybe one little, quote unquote, ‘token’ patient’s opinion. Because and I know I’ve been asked a lot of times — I love sharing my opinion on my story, but I am a cisgender, privileged white woman, So, if everyone just asks the same kind of profile of patient, then they’re not hearing other voices. So. 

[00:10:15] Jen:
Yeah, the way that we help people understand that is look, if you’re only talking to a subset of the population, then you’re only innovating for a subset of the population. And you’ve drawn the exact example for why I started Savvy was I was also being asked to speak on behalf of all patients with arthritis, because I already had a seat at the tables. So, I recalled, like that’s the kind of work I was doing professionally, right? So, they said, “Hey Jen, will you be that patient for this committee or that project?” 

And it’s like, sure, but actually there are 54 million Americans with arthritis and I cannot possibly represent all of them. So, why don’t we go and understand those unique needs, either be it by diagnosis, race and ethnicity, geographic location, disease duration, like when were you diagnosed? How long have you had the disease? What kind of medications have you taken? What kind of insurance do you have? All of these different things that weigh into it. Socioeconomic status, health literacy; there’s so many different things when we think about the diversity of perspective. 

And I think that’s where what we try to help innovators understand is like, okay, well who exactly are you trying to reach? Let’s take, if they say something like, “Oh, well we just wanna talk to RA patients,” then we, what we do is we help them understand is, okay, so, we’ll go and find two people that are doctor diagnosed with rheumatoid arthritis, but we’re gonna also ask them all these other demographic questions so that if you’re talking to 20 people, you’ll know that you’ll have representation from all of these different types of demographics, so that you can start to see if there are areas that maybe you need to go deeper. 

And we certainly know that we need to do a lot more work in Black, Latinx, Native American communities. So, actually what we’re doing a lot of at Savvy these days is really talking specifically to many of these types of individuals so that we can understand the unique needs of these different populations. And so, it all just depends on kinda what the project is and helping those innovators or researchers understand that one person, and even a group of people can’t speak on behalf of everybody, but it’s a step. And we just try to get people to understand, okay, well you did that. Take it back. Reflect on what you’re missing. And then, you just iterate on it and keep building upon kind of the insights that you’re getting. 

[00:12:30] Cheryl:
That’s so great and I wanna take a minute to walk through step-by-step. Let’s say someone’s listening to this and they’re like, “Oh, I love sharing my opinion,” we just go on the Internet, oeople love sharing their opinions. And as a healthcare patient. I see a lot of other patients all the time saying, “I wish doctors did this. I wish my, I wish pharmaceutical companies did that.” So, what you’re providing, is an opportunity in a more formal way instead of just shouting to the Internet — which is fun, I do it all the time — But you’re providing a formal way for them to give that feedback. So, if someone’s like, “Oh, my gosh, yes, I want to get my voice heard.” And how would they do that through Savvy? What would be like, step-by-step? 

[00:13:15] Jen:
Well, not that this is meant to be a plug, but the first step is we go to savvy.co-op — S-A-V-V-Y, dot, C-O-O-P, that’s our website. And then, you would first just sign up and so you would sign up to be on our mailing list. We actually release new gigs every Monday, so every Monday in your inbox you will see a list of all the different new opportunities to share. And some of them are disease specific, but many of them are things like, you know, tell us about nutrition or testing out a new app. I know that we’re rolling out right now an app to help track things around COVID-19. So, that could be something that could be applicable for a lot of people. And that’s why Savvy is disease agnostic because obviously, your listeners are not just people with arthritis. They have either other comorbidities or other interests and all of this matters. And so, you’d see all those different opportunities. 

And what happens is if there is an opportunity that somebody’s interested in, they can select that and they fill out some questions about either their diagnosis or various different types of qualifying information so that we can make sure that you’re the right patient to talk to these innovators. And then, if you’re selected, you get notified. And depending on what it is, sometimes it’s a survey, sometimes it’s an interview, sometimes it’s an online discussion board that you’re weighing in on all these different things. But we are really trying to make it more direct with those innovators as opposed to kinda what you’re talking about. Let’s say, it’s in a Facebook group or something, which is also super valuable just to be able to share your experience with other patients. But we want — we don’t want even just like an innovator to say, “Oh, yeah, I like looked at somebody’s Facebook conversation and now I know everything there is to know about arthritis.” Wrong. So, we really wanna make sure that there are direct ways to connect with those patients. 

And I would be remiss if I did not acknowledge the fact that after you take part in whatever project it is, you get paid. Because we stand on a soapbox that patients should be fairly valued for their time and expertise. Your experiences have value. And so, we do not take on projects that are like, oh, well, patients should just share this out of the goodness of their heart. Well, cool, they might do that, but also they have bills to pay and their time matters. And so, we really have been helping innovators understand that You’re gonna pay other doctors, or designers, or statisticians, or app developers because they all have value. Well, so do patients. And so, that’s what is really important for our cooperative to maintain its integrity, is to protect the best interest of patients. 

[00:15:51] Cheryl:
It’s just a beautiful bridge you’ve built between the, quote unquote, ‘innovators’, like the companies, you know, that are providing these solutions, whether it’s an app or a syringe for the medication. And then, the bridge between that and the patients, ’cause it can become — and I think you and I both know as patients, it can, you can get into your echo chamber, right? So, you find a patient Facebook group and you’re like, oh, finally these people understand me. And that’s beautiful and so powerful. 

But then, if all you do is just echo back and forth, like, “No one understands us. Yeah, this sucks. Like, we’re in so much pain.” Then like again, on the mental health side, it can be really validating to feel like you’re not alone. But then the flip side of that is that there can lack like a constructive element to it where it’s like, okay, well let’s take this pain and channel it into a better solution in the future, which seems like what you’re doing. 

[00:16:45] Jen:
And what we really love doing is after these projects — which we call gigs, so it’s a gig that you’re doing. And after the gig, we like to get follow up from both sides. Imagine it’s like an Airbnb stay when people travel. 

[00:16:58] Cheryl:

I love that. Yeah, that’s a great analogy. 

[00:17:01] Jen:

Yeah. But afterwards, both sides get to rate how’d it go, any sort of feedback to give, but also really what matters to us is that our clients are able to share back with patients and say, “Hey, thanks so much for participating in this interview. Because of you and the others that participated, we learned X, Y, and Z, and that’s informing us to roll out a new app or a new service.” So, whatever it might be, because that is super validating to patients to know that their experiences had an impact. 

Too often in healthcare research, be it clinical trials or other sort of research, we just take from the patients, we take their data and we squirrel it away and we never tell them what happened with it. We don’t follow up at all. And so, it’s like, why in the world would a patient wanna participate again? Because they’re like, did that matter? Like, I spent my time doing that. But, like, for what? So, we really wanna make sure that patients understand that they had an impact ’cause it’s really empowering.

[00:17:59] Cheryl:
That’s so beautiful and it’s so congruent with some experiences I’ve had as well. You wanna know, yeah, did my feedback — even if you just provide, do that little doctor survey after the visit, you wanna know, did anyone actually read this? Did anything change as a result? If you had a, quote unquote, ‘patient complaint’ or a, if you wrote a letter that was like a suggested improvement for your — you want to have a connection to it. So, I love that. It doesn’t just, the interaction doesn’t just end when you take the survey, you know, or provide your input. You’re actually able to see the outcome of that and it’s, yeah, it just really elevates the patient voice and makes it seem we’ve we value you as the expert in your care. It’s kind of a new concept that patients are, quote unquote, the ‘experts’ in their care. Like in the olden days, it was like the doctors are the experts. They just, like, tell us what to do; we have to do it. So, what is like patients being the expert in their care mean to you?

[00:18:58] Jen:
Well, I think it’s something that we should know all along, but over the past several years, there has been a movement towards what the industry knows as patient-centricity, meaning that the industry cares about patients. I can’t really give you a better definition than that because everybody talks about it differently and says that their company is patient-centered, the verdict is out on what they do to actually deliver on that. And so, what we’re really trying to get them to understand is just that, that if you believe you’re patient-centered, you should also be believing that the patients actually know what they’re talking about. They know how to describe their symptoms. They may not have the same medical jargon, but that’s not only okay, it’s the point. It’s like let’s hear how people are talking about their own condition in a way that also really is informative to those innovators to understand the lexicon, the syntax that an individual is talking about with these things. 

I’ll give you an example in rheumatology is that for the longest time, fatigue was never mentioned. Fatigue can be debilitating. And I’ll just say from my own personal experience, while my disease, my arthritis may be under control from pain, range of motion, joint swelling, all that kind of stuff, like, the fatigue can sometimes be the number one symptom that I have. And so, it’s something that over the years we finally got that incorporated into things like clinical trial outcome measure sets. And so, what a clinical trial outcome measure set is, is sort of like a fancy term for, what are we measuring when we conduct a clinical trial. 

And so, clinical trials are a way to test out — so, usually it’s an experimental drug to see if it’s both safe, but also effective. And these things take like 15 years to come to market. So, I feel like after the pandemic, people are going to have serious expectations about drug development because this is bananas that we are bringing a vaccine to market in less than a year. So, know that is not a norm. I hope it can be, but usually these kind of things from developing it in the lab to getting it through all the different phases of a clinical trial and to market is like 10 to 15 years. 

And so, that’s why if people don’t do it right upfront, if those innovators, let’s say at a pharma company are not saying, “Hey, what matters to patients? Should we measure fatigue?” And they’re like, “Nah, we don’t need to measure fatigue.” And then, 15 years later, this drug comes to market and now you’re sitting in your doctor’s office and that doctor says, “Here are these two drugs that I’m considering for you. There’s Drug A and Drug B.” You’re like, “Great doc. I want the one that gives me less fatigue. Which one is that?” They go, “Oh, well we never measured that. Or the pharma company and the investigators never measured it, so I can’t tell you.” And you’re like, well, then I don’t have the information that I need to make a decision. 

So, this is a long-winded way of saying that patients know what they want, they know what they’re living with, but if we’re not listening to them, then it becomes moot and we put all the onus on those patients to then follow their treatment plans and all of these things. But yet we haven’t done the work to understand what they need. 

[00:22:24] Cheryl:
I was shocked, honestly, when I asked, my provider, “Well, which medicines are, yeah — which of these medicines actually work on fatigue?” Because my experience, my patient experience with rheumatoid arthritis initially was, I guess more the textbook, which is what they used to think is if you respond well to the drug therapy, that it improves your pain levels and stops inflammation, then your fatigue will just move in tandem with that. So, no pain equals no fatigue. Lots of pain equals more fatigue too, because they’re all – it’s like a Venn diagram where they’re, like, the root cause is overlapped. 

Yeah, where, so I, that was my experience on my first biologic. I was like, oh, I felt horrible before. Now I feel amazing. No worries forever. Then my other, with my other medication since then, that was like the only time I’ve been in complete medicated remission. I’ve realized, yeah, how complicated it is. I’m like, well, there’s some of the medicines I’ve been on that work really great for pain, but not fatigue or vice versa. So, when I asked my provider “Yeah, which, well, how many of them are approved for both versus one?” He said, “Oh, only one of them’s approved FDA approved for fatigue right now.” I was like, what? 

[00:23:35] Jen:
So, I used to serve on the FDA’s advisory committees, one of them being the Arthritis Advisory Committee. And so, people actually think that — what would happen with an advisory committee is that for certain products that are looking for FDA approval, that sometimes when the FDA is, “Ooh, we don’t exactly know. We want some input from other stakeholders.” They bring it to an advisory committee. And at that time, then the sponsor, which is a pharma company, presents their data, the FDA kind of presents the same data, but from their perspective, and then the stakeholders weigh in. And those are doctors, like clinicians, rheumatologists, statisticians, epidemiologists, patients like myself. Those kinds of folks are weighing in. 

Now, what we say doesn’t actually approve it or disapprove it. So, we vote and we say yeah, we should approve it. Well, the FDA gets final say, but they hopefully take into account what the advisory committee is suggesting. So, all that being said, when I was serving, really my biggest question always was what kind of more quality of life measures did you ask? And I served for many years, and over time I saw it shift a little bit. But remember again, that this, even though I was serving for many years, those drug trials started years and years before that, so they had to have evolved over time. But what was interesting was a couple things. 

Number one, there were times that after they, the pharma company gave their presentation, and I would ask did you measure things like fatigue or activity levels or any of these sort of, you know, what they think of as like these kind of fluffy measures. What was interesting is sometimes they said ‘Yes’ and then they would go into like their slide deck and pull up what’s like a supplemental slide of if I need it, but they didn’t present it as part of their initial presentation. And it was baffling to me because these meetings are actually open to the public. Where should any of you listeners be interested, you can log on the FDA’s advisory committee schedule, see the different things on the docket, and you can tune in and you can listen. 

And so, it was wild to me that they wouldn’t take that opportunity to spend like literally two minutes, you could have presented a slide and said yes, and we asked patients about quality of life and we saw that on this medication, their quality of life measures improved 10 points over those that were on standard of care. Quick and easy. But it’s like, oh, thank you for caring. So, some of them actually did measure these things, but they just didn’t think it was important enough to share, which I was always begrudged at. So, I’m glad that there’s now more of a movement towards measuring them, but time will tell how much weight and importance is put on it. 

We actually do know that the FDA is now really making a claim that they do care about patient engagement, but they actually stop short of telling pharma companies how, like, what their expectations are. They just say yes, we think patient engagement is great, and those pharma companies usually go, well, tell us how to do it. And they don’t. And so, then a lot of pharma companies go, ooh, too scary. And they won’t do it. So, we’re trying to shift that and keep nudging people in the right direction. 

[00:27:01] Cheryl:
That totally makes sense that I have to put a little plug in for occupational therapists because that is literally our entire goal is quality of life, like through engagement in daily meaningful daily activities and routines. That’s our like definition of what occupation is like a fancy word for meaningful daily activities. And so, yeah, I’m extremely baffled as both a patient and occupational therapist when quality of life isn’t looked at as the most important outcome. But like a lot of patients make fun of the commercials, as kinda like a therapeutic humor intervention for themselves to say, oh, my gosh, like they’re running through fields of sunflowers or but if you look at those commercials, they’re pointing to quality of life, right? They’re like, I can hold my grand baby’s hand again, or I can ride a bike. I can, like, that’s the idea, is to engage in life. And so, why are they not, or why, yeah, why is that not the primary goal?

[00:27:57] Jen:
Well, I think it’s interesting too if we take arthritis as we should be in this conversation as the example where there have been such advances that, you know, do those measures of yesteryear hold true anymore? And because I did a lot of like scientific research in rheumatology, what I would find is some of them are really outdated. The ones that are looking at, like, the health assessment questionnaire and whatnot that’s like button your shirt, which I’m not saying that is easy for everybody, but for a lot of people because the treatments that — when I was a child it was gold shots. Gold shots were the treatment, and then NSAIDs, and then flash forward decades later, and now we’ve got biologics and actual, like, medically controlled remission. So, are these questionnaires and/or other assessments, are they sensitive enough to recognize the advances that rheumatology has had? 

And the problem is that they then have either like a ceiling or floor effect, meaning like they can only understand like up to a certain level, and then they aren’t helpful anymore. And so, the challenge that perhaps your listeners are thinking of, okay, cool, well let’s like redo some of those assessments because now let’s change them so that we can get really granular and understand what is the next level of rheumatology and treat to target. But the problem is those measures — I told you how long clinical trials take to come to market. Yeah, well, it takes a long time, maybe not as long, but to develop out new outcome measures because you have to do all these tests to make sure that they do what they want them to do. And I’m not gonna call my research colleagues lazy, but in the interest of time, they’re oftentimes, they’re like, well, no, we don’t have time to do that, so we’ll just keep using the old measure. 

And so, part of it is that like innovations are moving fast-ish for healthcare research. But the measures that we’re using are getting outdated. And so, we have to figure out how to get those sort of up to speed so that when those patients are saying, you know, “I don’t wanna just be able to button my shirt, I wanna be able to go run that marathon. I wanna be able to sculpt all day long ’cause that is like my hobby or my occupation,” we need to be able to get more granular because a lot of those assessments really are triggered more about can you just like function, but how can we help people not just function, but excel and do all the things they wanna do?

[00:30:36] Cheryl:
Oh, completely. I, just in the last, you know, I’ve been seeing my rheumatologist for 18 years, and I’ve noticed at first they had that health assessment questionnaire. The part that’s just like, can you open a faucet? Can you put on your, can you plant your clothes? Can you wash your and dry yourself? And I’m like, yeah, only when I’ve been the most severe could I not do some of those things. But then, and so I was as an occupational therapist, it was such like a mixed feeling because I was like, well, I’m glad you’re like close. You’re asking about something to do with my actual life. But it’s like you said, it’s too much of a ceiling effect or floor effect, whichever one is the one where it’s not sensitive enough.

And so, but in the recent years, I wanted to point out that the thing I really like is that they added the bottom a little line that says, “Considering all the ways in which health and disability affect your life, how would you rate your life right now on a,” and again, it’s just you just get to put a little X mark and I’m like — because I’ve had days or times when it’s, everything’s a zero or very minimal problems in doing the very basic tasks like buttoning and turning on a faucet, but considering all the ways, and I would be like, I had a 40% of full health and quality of life. So, it’s a way for us as patients to actually indicate that wait, you’re not getting the whole picture here. So, I don’t know if that’s officially been a part of it, or that’s just my doctor’s office that’s done that. 

[00:32:04] Jen:
Yeah. No. It is. Well, some folks use that as like an official way. They use that dose both for doctors as like a catchall and for patients to ask them this overarching, like, ’cause same thing with doctors. They actually have the same things where, you know, based on your labs or this or that, they’re scoring what a patient gets. But then they have what they call the physician global assessment, which there’s a lot of controversy around. Do two physicians even rate that the same way? But that’s where sure, you may look fine, but they talk to you like something’s not quite right. Sure. Your labs look fine. And I’m describing myself, like my labs always look fine, but they’re like, oh, something’s just off here. So, they can use that as like a catchall. But it’s tough and those things rarely make their way into clinical trials or things like that. But it’s tough. 

And this isn’t unique to rheumatology. In fact, I could share. So, Ronnie Sharp, my business partner at Savvy Cooperative has cystic fibrosis and I’ve learned a lot about cystic fibrosis in our time working together. And so, he’s actually been in like dozens and dozens of clinical trials. Cystic fibrosis is a rare disease, but has had a lot of innovation. And right now, I guess the clinical trial was like almost two years ago, but I watched his life change completely because of this new drug. And it was wild. Like, I can’t even express, and it’s not even my life, but I’ve watched it change him. 

But even he’ll share the fact that what he might rate between like his — so with cystic fibrosis, it’s affecting your lungs and your ability to clear, I’m gonna butcher this, but clear the mucosa and whatnot from your lungs. And so, they’re looking at lung function. And so, his lung function at two different times could be rated the same. But he would tell you right now, his life is so different. He can do whatever he wants versus before when it’s, yeah, my lung function is what it is, but I can’t play with my kids. I can’t get on the ground without risking my lungs bleeding and all these different types of things. And so, that is hugely different. And so, how do we discern between those different things. And a lot of the time we’re just not equipped with the right questions to formally ask patients. 

[00:34:24] Cheryl:
I am gonna have to talk to some of my occupational therapy friends. I know we have as occupational therapists a lot of really detailed assessments for quality life and ability to engage and not just like in terms of functional independence, like, again, can you self-dress, but actual engagement in like what we call instrumental activities of daily living, which are the ADLs activities of daily living are like the tiny little ones. Can you — or the most basic — can you put on your pants, versus the instrumental ones are care of children, care of pets, care of finances, health management, and maintenance. So, it’s just, I wanna help connect some of these dots, ’cause maybe we should be getting some of those again outside of our little silo. 

[Intermission begins]

Hi, everyone. I’m interrupting really quickly to remind you that this podcast is brought to you by The Rheumatoid Arthritis Roadmap. It’s a comprehensive online education and support program that I created from scratch to help people learn how to live a full life despite rheumatoid arthritis. In the course, you get to learn how to manage everything from physical symptoms like pain and fatigue, to social and emotional aspects of living with rheumatoid arthritis. I even cover the logistics of things like how to track symptoms and how to advocate for yourself in medical appointments. To learn more, go to myarthritislife.net. 

[Intermission ends]

One of the things I usually talk about with somebody who’s a patient, whether or not they’re also like an expert in another area, is your kind of personal journey, your personal journey with juvenile idiopathic arthritis. I would love to just hear a little bit more of the evolution of — you said your JIA is somewhat well controlled now. And but when you’re younger, you did the gold shots and you lived through some of them less advanced just times. So, can you — I don’t know if there’s a way to summarize?

[00:36:14] Jen:
Yeah, setting the stage. I was diagnosed in, what, ’85? And so, things were very different then. The expectations for kids were very different then. I got involved in sort of arthritis advocacy and in volunteerism as a late teen, early young adult, and my world changed then because I hadn’t met anybody with arthritis. And it’s interesting because, in later in life, I asked my mom like, why didn’t we participate in things like camps or conferences or other events? And she said very earnestly to me that she did not wanna see what her kid was gonna turn out like, because back then the majority of my peers were in wheelchairs or had significant deformities. And I actually credit a lot of my prognosis to the fact that despite the fact that my early physicians, again, doing the best they could, sort of advised me not to be active because the, mindset in the eighties was like, don’t move, you’re gonna hurt yourself. 

So, instead, my parents enrolled me in dance because they just wanted to get me out the door and I had an older sister that needed to do something too. Meanwhile, everybody else in my like community and town, they all played soccer and did gymnastics, and I was not allowed to do either of those things. But dance now is like super early proprioceptive training, like motor skill training. And so, it was actually wonderful for me and gave me confidence in the ability to do things that I wanted to do. I went on and became a dance major in college as well. I danced professionally. So, it’s something that this is kinda like my, the story of my life is that when people tell me I can’t do something, I then doubled down into it. So, it was one of those things too. 

I remember in high school when I was flaring, my parents again, well-meaning, and physicians said, perhaps you should pull back from some of your academic course load because it could be really challenging and we don’t know how much school you’re going to miss. And I was always that super top student type mentality. And so, I was like, no. And so, I think that’s, part of the drive that I’m like, well, screw that. I’m gonna get a PhD instead. So, that’s where I think that that, for me, it really was like a motivator, but I also said that my path looked very different from my peers. So, it would have to be, I withdrew from undergrad, I got sick and had to withdraw one semester. But then, I actually made up the time, I graduated early after all of that. I graduated in three years instead of four, even though I missed a semester. So, I just, I will, it was hard, but I wanted to take things in a different direction then. 

So, I don’t know. I just, I think that it’s been ups and downs, and I’ve, yeah, failed a lot of medications, especially with early biologics. Before we knew things about combination therapy being important, I would kind of cycle through all the biologics, and they, probably about every 11 months for me, they would become ineffective until we learned that you’d need some sort of DMARD in there to help balance things out. But I don’t know. It’s something that I just got used to. And I think it’s something that I tell like parents and kids for sure — well, the parents of children — is that what your child is experiencing is very different from what you as the parent is experiencing. And I’m not a parent, so I don’t actually know that, but I know that the anxiety and guilt and burden that my mother feels, I try to alleviate from her because I have a fantastic life. I have accomplished a lot that I recognize. It, again, it’s been challenging. I’ve been in and out of the hospital. I, my plans have changed. I actually had a brain tumor removed while I was doing my PhD. That was fun. And so. 

[00:40:22] Cheryl:
Wow. Yeah, I remember that. That’s why I met, I think I met you then at the Juvenile Arthritis Conference, just when you had been receiving treatment for that? I can’t remember, but yeah, I remember being like, geez, what’s the universe gonna throw —? But the universe throws stuff at you and you are just like, okay, well that’s not gonna stop me.  

[00:40:40] Jen:
Yeah. And everybody’s going to identify in different ways. Like, for me — well, let me back up. I understand why many people say my disease does not define me, and I respect that. For me, my disease actually does, but in a really powerful way. I really own my situation because it has opened so many doors for me. I have really been able to have a seat at a lot of tables I probably wouldn’t otherwise. I’ve been able to be in experiences that have shown me, oh, I wanna go do that. Like, I’ve had such a random meandering path between being a dancer or a consultant or an academic and doing FDA stuff and now I’m running a company I never thought I would do. I’ve never been prescriptive about it. Like, I thought I was gonna be a doctor as a sick kid, but I was actually disenchanted by that because I saw that my providers couldn’t even practice the medicine that they wanted to do because of the limitations of our system, especially here in the United States. 

And so, I was like, well, I’ll go do something else. And I’ve had a great support system. I think that like my parents have always — they’re like, okay, you’re gonna go be a dancer. Cool. Like, we’ll be here to help support you. So, I know my privilege that should I need anything, I could always have support from my family. I’ve had great health insurance that has allowed me to do these things. I cannot speak highly enough about this that I’ve been able to do these things ’cause I’ve not been attached to an employer in the same way that others maybe because of where they get their health insurance. And that’s a whole ‘nother thing to unpack for another today. But yeah, I think it’s something that your disease does not have to hold you back. It’s just accepting that perhaps you just, your pathway might look a little different. 

[00:42:32] Cheryl:
That’s beautiful. And one of my favorite questions to ask, a lot of what you’ve already talked about would speak to newly diagnosed patients, but really specifically, what message would you like to share maybe with newly diagnosed patients who might be like, oh, my gosh, I had my life planned out. It’s going to be a certain way, and then this diagnosis has just hit me and I’m freaking out. 

[00:42:56] Jen:
I mean, that’s tough because actually I have not had that perspective. 

[00:43:00] Cheryl:
I was thinking that as I asked it. Yeah. Yeah. You’re like, well, at 11 months I had my life all planned out. I was gonna play every day. 

[00:43:06] Jen:
Well, big genius. No, I didn’t. And so, I fully appreciate that I do not understand that perspective. Certainly there have been times in my life where my disease was under control, and then I flare and you’re like, “Oh, great, this again,” but it’s always something that, in the back of my mind has been smoldering and about well, what if, what if, what if? So, I don’t have a great way to share on that except for the fact that I don’t, if I can draw on my experience that it has not limited me from doing what I wanted to do. I think it’s just taking the time to reflect and grieve is completely acceptable and necessary. I just acknowledge the fact that life sucks sometimes and it’s okay to go there. But then, to try to step back and see that there again are probably still ways to get to where you wanna go. But yeah, your plans would probably put in a jar and shaken up and it is what it is, but you just find a path forward. 

[00:44:11] Cheryl:
Grieving is so important and I think there’s definitely a lot of pressure, especially on like social media. And I try to, like, I sprinkle like realistic acceptance and then yeah, I sprinkle a little bit of inspiration in, but I really don’t like — and I think I’ve got a little flavour from you before that you probably also don’t like this kind of idea that, like, I got diagnosed with this, but I’m just gonna overcome it and I’m just gonna think positive and I’m gonna conquer it. And then, la dee da, it’s like there’s almost like a toxic positivity sometimes for newly diagnosed. 

[00:44:40] Jen:
Yeah, everybody can take their own approach to it, I think it’s like the whole social media effect, right? We portray on here is not reality, and that’s challenging when you live with a chronic illness and all you wanna know is that you’re not alone. You don’t need anything else. You don’t need somebody to solve your problems. You just wanna know that this is normal and just validate that you are going through this. And so, I think that is why it’s so wonderful that you’re doing podcasts like this and all the other work that you’re doing, and probably so much work that your listeners are doing too, just to help be that normalizer for the next person that is coming into this community they didn’t mean to be part of. That’s beautiful. 

[00:45:22] Cheryl:
Yeah. Yay! Well, thank you so, so much. And then, yeah, and I’m gonna, I always put this stuff on the show notes, but just in case someone’s like an auditory learner, where can they find out more? You did say savvy.coop for the website. Is there anywhere else you’d want people to check out, you personally or Savvy? 

[00:45:44] Jen:
Yeah. I mean, you can follow us on social. For Savvy, it’s S-A-V-V-Y-underscore-C-O-O-P. That’s both our Twitter and Instagram. You’re welcome to follow me if you care. Mine is, you gotta spell it because nobody knows my last name, but it’s Jeff Horonjeff, J-E-F-F-H-O-R-O-N-J-E-F-F, that’s my Twitter and Instagram handle. You’re welcome to find me there. Twitter and LinkedIn, I speak about more professional things. Instagram, get ready for my cats. 

[00:46:22] Cheryl:
We are all full human beings, right? None of us is just ‘I am an arthritis patient and I think about arthritis 24/7 and nothing else is important to my life’, you know, so that’s wonderful. And just thank you again for all the work you’re doing. It’s been a pleasure knowing you over the last half decade, I don’t think I got introduced to you longer than that. Maybe decade. Yeah. I don’t — what is time again? 

[00:46:44] Jen:
Exactly. I don’t know, but it’s, I was gonna say it feels like a long time, but for a good reason. It’s been wonderful to see all the great things that you’ve been doing for the community. So, thank you for really making a space for patients to understand that they’re not alone. 

[Ending note]

Thank you so much for listening to another episode of the Arthritis Life Podcast. This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online course that I created from scratch to help people live a full life with rheumatoid arthritis, from social and emotional aspects of coping with rheumatoid arthritis to simple physical strategies you can use every day to manage things like pain and fatigue. You can find out more on my website, myarthritislife.net, where I also have lots of free educational resources, videos, and more.

Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by Rheum to THRIVE, an educational program I created from scratch to help you go from overwhelmed to confident, supported, and connected in a matter of weeks. You can go through the pre-recorded course on your own, or you can take the course along with a support group. Learn more at the link in my show notes, or you can always go to www.myarthritislife.net. That’s life.net. 

And if you like this podcast, I would be so honored if you took the time to rate and review it. I also encourage you to share it with anyone, who might benefit from it. I also wanted to remind you that you can find full transcripts, videos, and detailed show notes with hyperlinks for each episode on my website, www.myarthritislife.net. If you have any ideas for future episodes, or if you want to share your story or wisdom on the podcast. Just shoot me an email at info@myarthritislife.net. I can’t wait to hear from you.