Spencer Health Solutions invited Jen Horonjeff, co-founder of the Savvy Cooperative to join our podcast today. We had a great conversation about the JP Morgan conference and a simple statement she made there that got some national buzz. We also dig into the difference between patient centricity and patient-reported outcomes. I hope you enjoy our conversation on “People Always, Patients Sometimes”.
Janet Kennedy (00:21):
With me today is Jen Horonjeff, one of the founders of Savvy Cooperative and this is going to be a really important podcast to listen to if you are a patient or you need patients for a clinical trial. Jen, welcome to the podcast.
Jen Horonjeff (00:44):
Thank you so much for having me. It’s my pleasure.
Janet Kennedy (00:47):
I love the fact that you are not only putting patients first, but you have built a business that is by and for the patients a true cooperative.
Jen Horonjeff (00:59):
That’s correct. I know people don’t necessarily think of what we’re doing as being something in the cooperative space that they are used to in farms or co ops or housing, but we decided to use a traditional model. It’s been around for several hundred years and apply it to a way to more fairly work with patients.
Janet Kennedy (01:17):
Now before we get into a discussion of what is the Savvy Cooperative, I’d love to get a little bit of your background because that’s the very reason that the Savvy Cooperative exists. So do you mind telling me a little bit about your situation, which I would have to amend to say your health situation that really made you aware of the challenges that patients face?
Jen Horonjeff (01:39):
Absolutely. I know firsthand the challenges that patients face because I am a patient. That term does not offend me. I have been a patient almost my entire life. I was diagnosed as an infant with juvenile idiopathic arthritis and several other related autoimmune conditions. It’s similar to what adults have as rheumatoid arthritis, but now it affects almost every single joint in my body. Now as an adult, I had a brain tumor removed about seven years ago almost exactly. So I’m somebody who just has been living and breathing in the patient space. I actually thought I was going to go into medicine. I was premed and in the college, but truly I saw the limitations of what my clinicians could actually even practice because of our healthcare system. So I became a little bit disenchanted by that and ended up then instead becoming a human factors engineer, so really doing human centered design and how can we better design the world.
Jen Horonjeff (02:36):
In my case for people with disabilities or other impairments or challenges that the world was not designed for and then I became an academic. I got my PhD just technically in environmental medicine, but that’s a really loaded term. I was studying patient centered outcomes and of interest to perhaps your audience. I was looking and doing a lot of research around outcome in clinical trials to make sure that they were including things that mattered to the patients so that if we wanted to, you know, when a drug rolls out, we want the patients to have shared decision making with their clinicians. We need to measure the things at the very beginning that they care about and so that’s something that I was really passionate about. Just making sure that we included everybody’s priorities, not just the payers and the providers, but also the patients.
Janet Kennedy (03:24):
Explain a little bit about what exactly all that is. Patient reported outcomes, environmental medicine. That’s a really confusing term. And as you mentioned, maybe a little loaded. So what does that mean?
Jen Horonjeff (03:38):
And I’m glad that you brought up patient reported outcomes because patient reported outcomes are different than patient centered outcomes. Patient centered outcomes, and you could argue whether or not you like the term, but patient centered outcomes are meant to be things that matter to the patient. Patient reported outcomes are something that somebody actually reports. And the reason why they are different is because just because a patient reports something does not mean it’s important to them. You could ask the patient, you know what color is your hair? That’s not going to change how their MS is. And just because the patient does not report it does not mean that it is not important. So take my expertise in that area.
Jen Horonjeff (04:22):
I live in arthritis and rheumatic diseases. To them it is very important to understand whether or not there is joint destruction. So that oftentimes means making sure there’s some sort of radiograph to track any sort of changes there. But that’s not a patient reported outcome. That’s not a survey they’re doing. So I think it’s just important to remind people in the space that just throwing what are known as PROs – a patient reported outcome – in your clinical trial protocol does not mean you’ve done all the work to understand what patients care about.
Janet Kennedy (04:53):
That is fascinating. Now I understand patients also care about hearing how the clinical trial went or what was the result that came from their efforts. And I guess rarely do they hear that.
Jen Horonjeff (05:05):
I think this is something that’s being discussed more and more about returning results to patients or just how are we thinking about their participation and valuing it in a meaningful way.
Jen Horonjeff (05:15):
And that’s going to come in a couple of ways of, you know, how are we making sure that they feel taken care of throughout the clinical trial itself while they’re doing it, but also what is the end result? Is it, you know, sharing some sort of data back with them. You know, a lot of them are doing it because they’re just trying to find new treatments. They’re paying it forward to the next generation, but nobody wants to feel like they’re being used. Like their bodies are literally being used, like this whole podcast, you’re people first. And so I think there needs to be a way to communicate and to value these human beings in a better manner and thanking them for their participation.
Janet Kennedy (05:51):
Now, Jen, had you been a participant in any clinical trials up to that point?
Jen Horonjeff (05:58):
I’ve been participant in several different trials, never to test out a new therapeutic, however, which was a lot of what my research was around.
Janet Kennedy (06:07):
All right, and I think I’ve made you jump ahead to some of the exciting stuff we’re going to talk about in a minute. Let’s go back. I still want to hear the history; of how did you evolve from getting your PhD to founding the Savvy Cooperative?
Jen Horonjeff (06:19):
Yeah, sure. So as you can tell, I am quite open about my conditions and talking about it. I’ve been very involved in patient communities, so what started to happen was that when I was on the professional side of the equation, I had a seat at the table. I was low hanging fruit to these other researchers and innovators and colleagues of mine and because I did a lot of work specifically in rheumatology in the areas that I am a patient, people will say, Oh Hey Jen, you’re a patient. Will you weigh in on this project or will you be the patient rep on this committee?
Jen Horonjeff (06:51):
And at first, sure, I was happy too, but there was actually one weekend time that I can remember. I was asked to join several different projects specifically in my disease area and I thought, hold up, this is not right. Clearly this is an access problem and this access problem is a diversity problem because if you are only talking to me who is white with a PhD living in New York city, that is not representative of the 54 million Americans with arthritis, so how can we do better to make sure that we’re hearing from all sorts of different participants so that we can make more inclusive innovations. Our research can include people that have diverse backgrounds and so that was kind of like the aha moment. Then I just started playing matchmaker. Organically. When I would get these requests, I would go to my network and say, Hey, does anybody else want to weigh in on this?
Jen Horonjeff (07:45):
And then I started getting flooded by patients who did want their voices heard because they’ve never been asked before. And then I had to kind of operationalize it. So I just slowly started piecing this together and then seeing, wow, this is a problem it needs to be solved. It’s not actually unique to any one condition. This disease agnostic. And we need to create best practices to make sure that when industry or academics or anybody is working with patients, they’re doing so equitably. Because that is what I as a patient have seen over and over again, is that my insights are taken so somebody else can benefit or profit. And yet I am left with nothing. And yet I’m in a position of privilege where I can do that. But not everybody is. And that’s part of what’s driving the diversity issues. So through our work at Savvy Cooperative, we provide an online marketplace that helps to connect companies and innovators or agencies and firms directly with diverse patients and caregivers so that they can connect and do user research.
Jen Horonjeff (08:56):
They can de-risked their innovations by talking to the end user. That could be getting feedback on a clinical trial protocol in a certain disease area. It could be giving feedback on a new app that somebody is building for a particular community. It could be developing something new in a rare disease and you just want to talk to people to understand what the heck it’s like to live with that. So you can even start to understand where innovations need to happen. So that’s what we do is make that part so seamless and easy that there’s no excuse not to work with patients.
Janet Kennedy (09:27):
I’ve been a member of a variety of communities, both hobbies and for fun as well as in business, and it’s a lot like cat herding. So I’m curious how you decided to go from what I assume might be a closed forum or a Facebook group into creating this platform.
Jen Horonjeff (09:46):
Yeah, really because I am so drawn to making sure that there is more inclusivity and all that we do. We want it to make it open and democratic and there’s a lot of patient communities out there they can take on the forums of patient advocacy organizations like you say, closed Facebook groups. There are a lot of other online social networks for patients to, you know, do peer-to-peer advice, et cetera. But the challenge is that not everyone participates in these kinds of things. I thought about it for myself personally. Well I belonged to several Facebook groups. I’m not on there daily chatting about my experiences because that’s just not where I am in my patient journey. But if somebody said, Jen, will you do this interview, give your insights and give some feedback. Sure, I’m happy to do that. But we don’t want that to get lost in the middle of a discussion about somebody talking about a dire diagnosis that they just had.
Jen Horonjeff (10:40):
That’s not the place to say, Hey, take this survey. So we created a platform that’s open and democratic. Everybody can see all of our different opportunities. And then anybody can apply to participate. There are usually some screener questions to make sure it’s the right person for the right opportunity. But we really believe on making sure that we want to spread that around so that we can pull in more and more diverse voices into the conversation.
Janet Kennedy (11:03):
How does it work? I mean you are a business, so there’s gotta be a business model here and yet it is a cooperative, so it should be what? Shared efforts. Shared reward.
Jen Horonjeff (11:14):
Yeah. The way we make money is we charge companies or clients for access to patients, to our network to help promote that. And then let’s say a company comes to us and is looking for 20 patients to participate in a series of interviews.
Jen Horonjeff (11:31):
Well then that then gets posted to our second Trello virtual bulletin board or marketplace. Patients see that they opt in to participate. They then go and do that interview. They then get paid for that opportunity right then. But as a cooperative, people who decide to join the co-op, they’re not required to. But for those individuals that do join based on their participation at the end of the year, we look at our surplus profits and we redistribute it back to those members based on their participation through dividends. So a co op is a for profit company that gives its profits away. So that means that we’re not a five Oh one C three nonprofit, we just give our profits back to patients. That’s our model. Is it a calendar year? So you’re right now writing a lot of checks to your members. So it’s something that, you know, we’re still a young company and we’re looking at the best way to continue to grow while distributing dividends.
Jen Horonjeff (12:27):
But yes, that is the goal that at the end of each year we are looking at and where we’re doing our accounting now to look at, you know, what can we distribute out to our members and still make sure we have enough to be able to continue to grow.
Janet Kennedy (12:38):
I do find it really interesting that this isn’t specifically just clinical trials. I need a patient to join a trial or I need a patient to do a survey. You have marketing agencies wanting to know is their messaging on point?. I’m really curious to know how they get that feedback and have they learned lessons where they really thought, Oh gosh, we have this nailed and then we’re really surprised to find out that no, you missed the starting gate there.
Jen Horonjeff (13:05):
Oh yeah. And probably for a point of clarity specifically for your audience, I should be clear, we do not recruit for clinical trials. There’s a lot of people that do that. That is not what we do. Our touch point with clinical trials is making sure that people are getting feedback on it earlier on. We of course know that when you have to amend a clinical trial, it can take a lot of time, a lot of money, a lot of lost time getting that drug to market. And so what we’re you trying to do is help to connect those researchers or whomever early on so that they can have patients review the protocols, make sure it’s feasible for patients. You know, it’s, you know, one of the biggest problems is just getting patients to enroll and stay in the trial. So let’s flag those issues earlier on. It might be the marketing material even for that trial. Is it something that makes sense to patients? Is it accessible, does it resonate with them?
Jen Horonjeff (13:55):
Is that the kind of information they want? So that’s the kind of way that we interact in the clinical trial space, both on looking at protocols, marketing materials, understanding what should be measured, the clinical outcomes, etc.
Janet Kennedy (14:08):
Oh, I really appreciate that clarification because I’m sure other folks may not have quite understood the difference there. And that makes you valuable literally to every clinical trial.
Jen Horonjeff (14:19):
Well we like to think so. I mean that’s why it just so many people are guessing and this is what I experienced when I was on that professional side really well. Meaning people trying to do the right thing, they just didn’t have all the information and that’s not their fault. They’re not responsible for they themselves to come up with all of that information. But they are responsible to make sure they’re doing the work to go get it from other people.
Jen Horonjeff (14:43):
And I think that people think about patients as – when you get put with like the patient label, every other bit of intellect that you have often is wiped out. And so people are like, Oh, they don’t know anything. Let’s go ask the doctors or payers, no, no, no. They have very important information that is as important, if not more important at times to the other types of professional qualifications that you may possess. And it’s just complimentary. So we’re just trying to encourage more of a multi-stakeholder approach so that everybody wins. In the end, if a clinical trial is successful, that’s a win for the patient. So we want to be your partners on this journey to make sure that it’s all accelerating so we can get those new treatments, new solutions, new tools to patients faster.
Janet Kennedy (15:24):
And the patient’s role in clinical trials really hasn’t been front and center for very long. If it is even something I could say is happening now.
Jen Horonjeff (15:34):
Yeah, and I think one of the things, and I know you asked about some other ways that we engage with companies as well. One of the things is we’ve done some really horrible things to people in the past and clinical trials, things that certain communities still really hold on to and we need to earn their trust again. And that’s why we offer all different types of opportunities that are not enrolling in a clinical trial. It could be a survey, it could be giving feedback on how does this marketing campaign for Crohn’s disease make you feel? Oh, you know, they’re talking about my bowels. This is making me uncomfortable or portrays me in a way that I don’t see myself. Those are important conversations. So what we find is that if we can give patients different ways to engage in a survey and interview, et cetera, then they start to see, Oh, this things are okay.
Jen Horonjeff (16:25):
I’m able to engage with this community of professionals and they’re valuing me and I’m starting to trust them. You don’t have to only do clinical trials to do that. So I think it’s important to let people engage in ways that feels appropriate for them, comfortable, culturally sensitive. We need to just be a little bit more thoughtful about how we’re working with patients.
Janet Kennedy (16:44):
How are you able to recruit into diverse populations with people of color or individuals that might be at lower income? Are you finding it easy to reach this via word of mouth? How’s the word getting out?
Jen Horonjeff (16:59):
So it’s our secret, but not secret sauce. It’s our co-op. Our model incentivizes and empowers our members to go into their communities to places that I shouldn’t go. You shouldn’t go like it’s, you know, it’s for them to go in and culturally sensitive ways and share these opportunities. That’s how we’re able to recruit fast. We’re able to recruit quality participants, diverse participants, even though this co-op feels like a cute little warm and fuzzy business model to other people. Our unfair advantage is our fairness of how we treat people and that’s what makes us do our job better.
Janet Kennedy (17:36):
Oh, I love that idea. Well, I know you have advocated for patients in very public ways. You’ve spoken at conferences, you all are doing a great job putting out content, but recently you kind of laid it all out there. For some folks and I’m very curious to hear more about your experience at the JP Morgan conference. You were on a panel and you were hospital casual.
Jen Horonjeff (18:02):
Hospital casual. I like that. Not – hospital glam. You will hear that term passed around a little bit. Yeah, I’m in a little wardrobe choice and apparently it resonated with people.
Janet Kennedy (18:15):
What was the panel about?
Jen Horonjeff (18:15):
So the panel was actually about innovation in the pharma space, probably conversations that were relevant to your audience. Where do we see this going? And so I served as sort of the provocative patient there and as you and your listeners may know, the JP Morgan healthcare conference is predominantly an investor conference where executives attend and deals are made and people are scoping up trends for the coming year. And I’ve been attending this meeting for several years now, written about it. When I get back, I’ve, gosh, you know, there’s just a such a lack of patient voice and told every time, Jen, this isn’t the place for patients. But again, I just, it doesn’t make sense to me. It is a poor business decision to not understand the people who are supposed to be using your product or service. And so I just took a different approach.
Jen Horonjeff (19:08):
Again, I had no idea that it would blow up like it did, but if people weren’t going to listen to my voice, my blogs, whatever it might be, I just wanted to have a visual portrayal of this dichotomy of all of these people talking about how they’re going to make money in the next year off of new deals and forgetting that there are humans that are actually affected by their decisions.
Janet Kennedy (19:30):
I am getting a warm and fuzzy just thinking about this and for those who are listening, if you pop over to spencerhealthsolutions.com to where we’re going to post the podcast link, you’ll see a picture of Jen on stage wearing a hospital gown and I assume fuzzy slippers?
Jen Horonjeff (19:48):
Just sneakers. But yes, it was cold and it was meant to be. This is the reality of a patient is that in their scariest, darkest moments, we literally strip them of their clothes, their agency, we put them in a cold room and we tell them what to do and give them a treatment plan and tools that we did not design with them.
Jen Horonjeff (20:09):
Then we say, you know, you didn’t follow your treatment plan. You are noncompliant when they’re just trying to first of all negotiate whatever their diagnosis might be and then somehow reconcile integrating these tools or treatments into the life that did not meet their needs. That was the statement that I was just trying to make amongst all the other suits and everybody else in attendance. This is the reality for patients.
Janet Kennedy (20:33):
Well and I’m very happy that you got a lot of buzz out of that. You got some national media coverage and that is exactly the kind of message that people should be taking away from any healthcare conference. It is about the people who are the patients couldn’t agree with you more. I’d love to get your thoughts on how inclusive the conversations are with patients. In your time from launching the Savvy Cooperative to now, are you being approached more consistently by more companies and are there any that in your mind have really stood up and embrace this idea of patient inclusivity?
Jen Horonjeff (21:13):
Yeah, it’s really interesting. We’ve been doing this both kind of unofficially before launching Savvy and then what became Savvy Cooperative for many years. I would say even last decade people have been throwing around the terms patient centricity for a long time and now the grace period is over. You have to finally do something actionable about it. We even put out a white paper last year that was interviewing people across the life science industries, biotech and pharma companies asking them what does that term mean for them, their company, how do they act on it? And some of the things that we heard were that we don’t listen to like the term patient centricity, but we have to say it because if we don’t say it, then people will think we’re not patient-centered. But it’s kind of even lost its value because everybody uses it. And just throws it around. We’re trying to say, okay, you care about patients proven now let’s go work with them.
Jen Horonjeff (22:06):
So that’s what we’re trying to solve. That little piece of the puzzle when they’re saying, yeah, we’re patient centered, but we just don’t know how to work with patients. We don’t know where to find them in a way that meets all of our regulatory and compliance needs, et cetera. So we say, Oh, don’t worry, we solved that part for you. And to that end, we have really seen an uptick, both of our pharma clients, digital health, we work with a ton of agencies or firms, management, consultancies, investors, all these people need to understand how to de-risked their products, their projects for their clients, their portfolio. And so working with patients as part of that answer. Oh, that’s amazing. I love it. Well, what’s up for the Savvy Cooperative in 2020 anything new and exciting coming down the pike? Well, we launched towards the end of last year a new model for sustained engagement for companies.
Jen Horonjeff (23:01):
So where we used to help companies engage in what we call just gigs. So that could be, like I say, putting out a survey or doing 20 interviews or things like this. We now, based on our clients requesting it, have a way for people to have sort of on demand patient insights so that they can have more regular touch points without having to wait six months to convene a focus group. And so that’s been really exciting to see how people are utilizing this, both with our startup and digital health clients, our agencies, our big pharma clients. It’s been amazing to have them every month getting on the phone with new patients to get insights, just as sort of gut checks to de-risked the steps that they’re taking on a weekly basis as opposed like I say, to waiting until they get the next big project and all the contracting and all the framework around it signed off. So that’s been really terrific. So we’re looking to engage more and more clients and kind of a sustained model going forward as well so that we can help be their partners along the way.
Janet Kennedy (24:00):
Excellent. Well tell me if you were able to change one thing about clinical trials. Right now. What do you think you’d like to shake up a little bit?
Jen Horonjeff (24:09):
Well, I don’t think that I’m going to have some new epiphany. I think it’s a lot of what people have been talking about, about both things like virtual trials and making sure that we can include people that are not around centers where the trials are being conducted. I think that’s a really important thing to figure out so that we can get more diverse participants so we can be learning. This is one of the biggest imperatives around AI and machine learning going forward is if we’re learning on crappy data sets, then that is not going to be something that’s going to create inclusive innovations going forward.
Jen Horonjeff (24:42):
So we have to start thinking about how to change that conversation now. I think the other aspect that people are already talking about of course is having real world evidence or thinking about what are the inclusion, exclusion criteria of a trial that makes it more applicable to others. I can tell you for me personally, there are certain medications that I cannot be on because of other things that I have had because people have been excluded from trials. So they just don’t know how the body would behave because people like me were excluded. And so that’s a real problem. So we need to be thinking about that going forward as well.
Janet Kennedy (25:17):
And I do have a question about protocol design in working with protocol designers, do you find that they are too far removed from the end product? I hear so much from some of the folks that have innovation in their title in pharma and they’re all thinking about this is going to be amazing. Oh, but you know what? It still comes down to, if it’s not written in the protocol, it’s probably not going to happen. So what’s up with protocol designers? Are they living in ivory towers? Are they accessible? Are they as a group interested in these digital health innovations? Patient-Centered information and feedback?
Jen Horonjeff (25:55):
You know, I think that we need to think about it is just there are so many new tools that are being added and we need to make sure that we’re leveraging all of them. So thinking about digital tools or what other sort of resources or is it a virtual trial or whatever it is. Those are all great, but they’re not great unless it’s going to be working for the patient. And so that’s sort of my soapbox is let’s not design trial protocols in a vacuum and just guess it is not good for your business to do this because you’re going to waste time and money if you invest the time and the budget, frankly upfront to work with patients, to get feedback, to have them flag certain things.
Jen Horonjeff (26:38):
I mean, we’ve had trials where they’re working with communities that frankly, it’s very hard to leave the house and to travel and their trials may say, we need you to come in every week to give us feedback on how you’re feeling. We’ve had simple things like that and just flagging this is not feasible. Why do I have to come into the office? Why can’t I just get on a phone call? They go, Oh yeah. Simple things. We’ve looked at what are the inclusion, exclusion criteria of a trial and been able to flag. You are not going to enroll people in this trial. That person that your eligibility criteria was designed for does not exist, so why not have those conversations up front even if it feels scary to somewhat brush against what you may know. Don’t you want that information? Our patients are not here to be combative. They’re just sharing their experience so that we can do this faster.
Janet Kennedy (27:31):
Excellent. Well that is definitely going to be a key to making sure that people are adherent, persistent and that they’re staying into the end of the trial. It’s designed it around their needs, their lifestyle and how they’re going to interact with your trial rather than, you know, going to click the box a, B, or C.
Jen Horonjeff (27:51):
Janet Kennedy (27:51):
Well, I’m so excited that you joined me on the podcast today, Jen and I really look forward to meeting you in person at an event. I think the Savvy Cooperative is an amazing thing and I would consider myself a very healthy person. I take a little pill for this and a little pill for that. But generally speaking, I’m a very healthy person. Is there a place for me in the Savvy Cooperative?
Jen Horonjeff (28:14):
Absolutely. I know the term patient is loaded. It means different things to different people. We use that term because it’s what resonated with our population early on. But we have all sorts of opportunities as people say, we’re all patients and I’m supportive of that when it is galvanizing us all around a common goal. But it’s then talking about is that the right patient at the right time. But we get requests for people who care about their fitness and they’ve used some sort of fitness tracking app. We want to talk to you. We’re talking to mothers in underrepresented communities, so we want to talk to you. We even had one that was wanting to talk to people who wanted to improve their sex life. So tell me about the people that this is excluding. So I think that there’s opportunities for everybody, whether or not you consider yourself a patient, we encourage you to join Savvy, Cooperative. You can at least just get the different opportunities. And the whole model again, is to be able to share them. So even though it might not be applicable to you, you might say, Oh, my aunt has cerebral palsy, so I’m going to share this opportunity with her. Or my friend was recently diagnosed with breast cancer. I think she’d really like to be able to weigh in on this experience. So that’s why we keep it so open.
Janet Kennedy (29:27):
I love it and I wish you lots and lots of success and do look forward to meeting you. Jen, thank you so much for being a guest on the People, Always, Patients Sometimes podcast.
Jen Horonjeff (29:39):
It’s been a pleasure. Thanks for having me.
Reach out to Jen:
Savvy Cooperative website
Savvy Cooperative on Twitter
Janet Kennedy is the founder and host of the Get Social Health podcast series that began in 2014. Kennedy is the senior digital brand manager at Spencer Health Solutions and is a founding member of the Healthcare Podcasters Network. She also is a member of the external advisory board of the Mayo Clinic Social Media Network.