Including Patient Perspectives is Easy with Jen Horonjeff, Founder/CEO, Savvy Cooperative (transcribed by Sonix)

Welcome to the Outcomes Rocket podcast where we inspire collaborative thinking, improved outcomes, and business success with today’s most successful and inspiring healthcare leaders and influencers. And now your host, Saul Marquez.

Saul Marquez: And welcome back to the podcast. Saul Marquez here, today I have a wonderful guest. Her name is Jen Horanjeff. She’s the Founder and CEO of The Savvy Cooperative. Jen was diagnosed with juvenile arthritis as an infant and now has a laundry list of other conditions and surprises like a brain tumor. She’s 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. She has just been named as one of the Most Daring Entrepreneurs in 2018 by Entrepreneur Magazine and it’s important that we consider the patient voice in the work that we’re all doing in healthcare so it’s a privilege to have Jen on the podcast. Welcome.

Jen Horonjeff : Thank you so much. The pleasure’s mine.

Saul Marquez: So Jen did I miss anything in your intro that maybe you want to fill in the listeners on?

Jen Horonjeff : No I mean I think that I have taken a meandering path through healthcare starting with being a patient myself and then trying different facets of working in the industry and just really starting to see some of the differences in how patients think about things and how professionals think about things. So that’s really what I’m most passionate about.

Saul Marquez: For sure and I think that distinction is important. We don’t always consider the patient perspective. It could be a big miss. But then there’s the organizations and facilities that do. So there’s definitely people out there doing it. What would you say is a hot topic that needs to be on leaders agendas in healthcare today and how are you addressing those at the Savvy Cooperative?

Jen Horonjeff : Well I think that you know we turn around a lot of these buzz words like patient centricity and patient engagement and you know improving the patient experience and I’m a firm believer in all of these things but we want to take them from buzzwords to actionable deliverables that people can make sure they’re focusing on within their organization. So that’s really what we are focusing on at Savvy is a way to help companies not just talk about being patient centered but giving them the next step on how to actually talk to patients directly so they can learn from those experiences. So that’s really what I’m seeing as we’re transitioning to things like value based care and all of that we’re going to need more and more to make sure that we’re understanding how to drive more value to the patients than healthcare consumers.

Saul Marquez: Love that. And so I think this is a great opportunity to level set with the listeners and for you to really let them know kind of what the Savvy Cooperative is. What do you guys do? How do you do it for and why?

Jen Horonjeff : Yeah I would be happy to share. So Savvy Cooperative is actually a patient owned co-op that helps to connect companies or researchers or innovators of any kind, directly with patients or family members so that they can more easily learn from their lived experiences. And together we can accelerate the development of these patients centered solution. And so that’s really what we’re trying to do is help these companies that want to make better products or services learn what is actually happening in a patient’s life so that they can actually create meaningful products that are solving the real pain points that people like myself and patients are running into so that everybody wins. The companies make better products, they go make more money, great for them but the patients in the end get better products and services.

Saul Marquez: I think it’s a great initiative. Are there any specialties or say therapy areas that you’re focusing on or is it the whole gamut?

Jen Horonjeff : It’s a great question because it really stemmed out of my personal experiences and my background being in the arthritis and rheumatology phase that started playing matchmaker just organically because I was a professional on that side too when companies would come to me because I’m very open about my condition then I would be able to answer on behalf of arthritis patients. But when I kept getting asked over and over again I wanted to provide a way to have more diversity in the perspectives that we’re getting. And so I started to reach out to my own community so there was an organic way of drawing in sort of the arthritis, lupus, autoimmunity community from the start. My business partner also has cystic fibrosis and built one of the largest online communities for CF, cysticlife.org. So naturally we’ve kind of built these communities that have come along with us. But all that being said we meet made this disease agnostic for a reset where everybody can come because we’re I might be able to talk about my arthritis from a personal patient perspective. I might also be able to share if I had a bout with cancer or a child with asthma or a parent with Parkinson’s. So we wanted to create sort of a one stop shop for patients to easily find various opportunities to weigh in on. And same thing with the companies themselves that they don’t have to be reaching out to multiple different groups to get those kind of perspectives especially what we’re seeing sort of as the trends and like digital health. A lot of them are not specific to a certain therapeutic area. They’re really kind of bridging across their chronic illness or you know their personal health record apps or they don’t care what kind of condition you have. They just want to know would you use their products. So that’s what we are disease agnostic. But we do have strongholds in some of the auto immune phase, the pulmonary phase, cancer, diabetes, et cetera.

Saul Marquez: Makes a lot of sense. But overall just open and there’s your semi niche area of focus.

Jen Horonjeff : Yeah. And I guess I should highlight too that we have quote unquote healthy people as well because of course we need to understand their experiences and kind of keep them healthy and sort of their perceptions of the healthcare industry especially as we’re looking towards value based care. So anybody is eligible to join. I think that of course patients have kind of a loaded term but that’s really kind of what we’re trying to do is make it an open space for anybody who wants to contribute and share their insights to improve the healthcare industry.

Saul Marquez: Love it. And so maybe you could share something that you guys have done a story that you’ve done something different to improve outcomes.

Jen Horonjeff : Well I think that’s what our business model is is that ultimately we are trying to work with these companies or researchers so that they’re not wasting their time and money and resources building things that aren’t improving outcomes for patients. And to give you a little more background, my area of research is around Patient Centered Outcomes and making sure that we’re measuring them when we’re developing clinical trials or treatment guidelines because these things are useless to us if we don’t understand what the priorities are for patient. And so I’ll give you one example in the arthritis community we didn’t necessarily care about fatigue. We weren’t measuring it. But to patients, it’s a huge burden of their disease is how much between big experience beyond the pain et cetera. So now that’s something that’s becoming measured in various research projects. And so that’s the kind of stuff that we want to help the industry or research professionals get to those results faster so that they’re creating things that solve those problem. So that’s what we do as a service. Yeah. And I’ll pause or two…

Saul Marquez: I was just going to say that I think it’s a very meaningful perspective because we in healthcare we tend to fixate on outcomes and the numbers of you know things that got better and we sort of lose sight of the quality of life aspects like fatigue and you know can I go to the grocery store and things like that right. And so I think it’s important that we do incorporate the things that you’re incorporating to make sure that we address the entire life picture of people.

Jen Horonjeff : Absolutely. And there are certain disease communities of course that we’ll be very offended if you talk about a cure because they’re realistic that a cure isn’t coming anytime soon. So they want to understand how you’re going to help them today manage their symptoms, manage their access to care etc.. So I think what you just touched upon absolutely spot on. We need to make sure we’re understanding how we can help these patients because otherwise people in their ivory towers are dictating what they think patients want and that’s just not always in line with the reality of the patient care.

Saul Marquez: Love that. So great results. You guys are doing some wonderful things for patients and also helping companies that want to positively impact patients. Give us an example of something that hasn’t worked out, something that is a setback. What happened? What did you learn from it?

Jen Horonjeff : I mean I think is a great question to be able to learn from the mistakes or the challenges that people have. Oftentimes we come across you know just sharing the things that are always rosy but we often learn more from those that we have challenges in.

Saul Marquez: Agreed.

Jen Horonjeff : And I think some of the things that we see you know from a personal side is how hard it can be to reach patients in an authentic way that they think patients are of course quite smart and they can really sniff out whether or not a brand or a company is authentic. And so that’s something that we really put a lot of our sort of effort behind it’s creating and cultivating an authentic organization so that we can gain the trust of patients who have been put off by the healthcare industry. And we speak a lot about diversity. It’s really important. That’s why we started this. So you weren’t asking the same patients because in that case you’re only innovating for a subset of the population but it’s challenging. It’s something we care deeply about. But of course we are there yet where we would like to be. So I think it’s just acknowledging that none of us have met certain outcomes that we want in certain metrics and so we just keep trying to make sure that we are coming off as authentic and we can cultivate a more diverse community within our own organization.

Saul Marquez: Yeah. That word authentic I think is key. You know we definitely need to earn the trust of patients. And I don’t know my mind goes I was at the hospital the other day and I was walking through and you know they just had two different entrances I walked in and you know they’re wearing purple, it’s their color of the people working there and they were just very helpful and I walked to the other side and just these other two information people that were just super helpful and you could tell that they really wanted to be there that they really wanted to help me find where I was going. And and it made a difference. You know something so small but it really made a difference at the ground level. And then when you get to the community level when you’re running a company that authenticity is key. So I think it’s it’s really interesting that you guys have decided to focus on this authenticity piece.

Jen Horonjeff : Absolutely. I think you know what we see even outside of healthcare certainly people are making questionable choices about certain business decisions and ways they might be making revenue. So it’s really important. I think the wave of the culture to be able to be more discerning about companies that are practicing what they preach and trying to really do good and maintaining their integrity. That’s actually one of our core values is choosing integrity to make sure that we’re staying authentic with change with ourselves even if it means that it may take away from X, Y, or Z. If we’re not doing that then we’re not serving our community in the best way possible.

Saul Marquez: Jen what’s one of your proudest leadership experiences to date?

Jen Horonjeff : Oh gosh that’s a great question. Like I say I sort of meandered through the healthcare industry but really my passions have been around patient advocacy. I’ve always been a volunteer with various non-profit organizations. And I think giving a voice to patients is truly then what’s driven me. And obviously now I’ve started a company around it. But I think then to kind of follow that line by starting Savvy as a co-op. It’s something that’s very different and very challenging to get people to get their heads around the patients actually are our co-owners. We all collectively own the organization has been something that really brought a lot of joy to both myself and the community. To feel that we can restore the power balance back to those that really are the ones that we’re learning from and doing the work. So I think that that’s something that I’m proud of. It comes with its own challenges. But I think it’s really in line with what really motivates me and has had a really great outcome so far.

Saul Marquez: That’s excellent. Congratulations on that. Yeah. You know you definitely bring up a great point that patients are co-owners and and if we look at it that way we approach things will change. And whether it be from an industry or a provider perspective, definitely key. Tell us about an exciting project you’re working on Jim.

Jen Horonjeff : Oh gosh. Well I feel like there’s so many different places that we have all sorts of things. But you know I mean one of the things that we’re excited about is that we’re really ramping up our membership our co-op membership and providing more tools to our members so that they can go out and help you know engage their own community. It’s like a co-op itself is its own legal structure. And so therefore we’re trying to help people understand that they truly have the power to make this more successful. And I think it’s something that typically we’ve been more extractive from patients we’ve asked them to go how do these kind of things but it might be to the benefit of somebody else. And so we’re trying to give them the tools that they need. So that’s what they’re doing to help us grow. They will actually be the beneficiaries because we share our profits back with them based on how much they help us. So that’s I think one of the really exciting things that we’re working on not only getting these members on board but giving them the tools to thrive.

Saul Marquez: Unique approach and and definitely sounds like empowering to the people that get involved. Let’s pretend you and I are building a leadership course. I’m just including the patient one on one you know including the patient one on one. That’s what we’re going to call it. And with Jen Horonjeff and so I’ve got five questions for you. Lightning round style and followed by a book that you recommend to our listeners. You ready?

Jen Horonjeff : Yes. Go for it.

Saul Marquez: All right. What is the best way to improve healthcare outcomes?

Jen Horonjeff : It would be to talk to patients to understand which outcomes they want improved because otherwise we won’t be making a meaningful impact in their lives.

Saul Marquez: What is the biggest mistake or pitfall to avoid?

Jen Horonjeff : Tokenism. Thinking that by asking one patient you have done your due diligence to understand the patient perspective. It’s hard work and you need to be able to connect with diverse individuals to get a more representative sample to make sure that your product or service can be the best that it can and impact in both lives that it can.

Saul Marquez: Love that avoid tokenism folks. It’s not… an end of one is not good. How do you stay relevant despite constant change?

Jen Horonjeff : I think it’s listening to the people that you’re trying to serve and not just thinking that you know what the right track is doing we see of course things are accelerating fast with social media and the type of media that people want to digest. You really need to make sure that you’re actually listening to the end users that you’re working with to stay relevant in relationship to how they want to consume, whatever the information is giving, or how you can better reach them.

Saul Marquez: What is one area of focus that drives your organization?

Jen Horonjeff : Well certainly around making sure that the patient voice is heard. I think that’s really what our our staple is. We consider ourselves the Match.com for patient insight. So we’re just trying to make it easier for companies to actually get those insights to improve their products and services.

Saul Marquez: Love that. What is your number one success habit?

Jen Horonjeff : Success habit?

Saul Marquez: Yes.

Jen Horonjeff : Oh gosh that’s a great question. I think that I have recognized about myself that I am somebody who dreams a lot and has a lot of ideas. And I used to think that perhaps you know they were focused be more practical but truly some of these things have gone on to be successes. So even though you can’t focus on all the dreams and you know more wild ideas, every now and then one of them proves to be you know a real success. So don’t stop dreaming.

Saul Marquez: Love that. What book would you recommend Jen to the listeners?

Jen Horonjeff : Well staying in that line I would recommend Adam Grant’s Originals if you haven’t read it it’s a fabulous book and highlighting lots of different stories about people that he called are people who are people if you will. People sort of who think outside the box and you know. I hate the token word disruptor but thinking about that. So it’s a really great book to motivate you on how to think outside the box a little bit more.

Saul Marquez: Great recommendation and listeners if you want to get a link to the Originals, an entire transcript of our conversation with Jen from Savvy Co-op. You can go to outcomesrocket.health and in the search bar type in savvy coop. You’re going to find the episode there with all the links and resources. Jen this has been fun. I love if you could just share a closing thought and then the best place for the listeners to get in touch.

Jen Horonjeff : Absolutely. I mean I would just to motivate people to keep doing the good work that you’re doing and think about the various touch points to bring patients into the fold that can be from the very beginning and the ideation of you know sort of product or service you’re developing, let them help co create it with you to getting feedback on even what materials and resources that go along with it are there always opportunities to work with patients. And I truly believe that we will be stuck together. And if anybody wants to find out more about Savvy you can go to savvy.coop or you can certainly reach out to us at hello@savvy.coop. And we would certainly be happy to hear from many of you.

Saul Marquez: Jen, thanks again. You’re really doing a great job to raise the voice of the patient. It’s not that difficult. And with the services your company provides and the guidance you definitely are helping make it easier. So appreciate you making time for us.

Jen Horonjeff : No it’s my pleasure. Thank you guys for having me.

Thanks for listening to the Outcomes Rocket podcast. Be sure to visit us on the web at www.outcomesrocket.com for the show notes, resources, inspiration, and so much more.

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