This is part two of our PACK Chat with Jen Horonjeff of Savvy Cooperative – an award-winning entrepreneur with a passion for bringing the patient voice to the table, and not just her own! In the first half of this conversation, Jen shared her journey as a patient and researcher – the path that took her into the field of Environmental Medicine, human factors research, and multi-stakeholder consulting. Today we’re digging deeper into what Jen means when she says “nothing about us, without us,” and how she’s revolutionizing the way industry leaders incorporate patient perspectives into their work.
Time to read: 7 minutes
INTERVIEWER: Have the dynamics in healthcare shifted much since you started your career?
JEN: I’d like to say that they have. The healthcare industry has been talking about these buzzwords, from “patient-centricity” to “patient engagement,” for years, but only recently have they started to act on it.
There are many different ways companies can infuse the patient voice in their work. One thing we are seeing more of is the rise of the Chief Patient Officer or dedicated patient advocacy professionals.
This can be a way to hold a company accountable, but in some cases, those people may not be the decision makers nor have budgets to act on the initiatives that they want to do. So there’s an important difference between having a figurehead and empowering that person or team with the resources necessary to, in fact, make the company more patient-centered. That’s where I think we still have a lot of work to do in order to make sure we deliver on the sentiment that people are preaching.
Innovators in the space who are taking the necessary steps to listen to their stakeholders will end up being the leaders in the industry going forward because they’re going to be the ones better serving the end-user.
INTERVIEWER: Makes sense – what other steps do you typically see companies taking to listen for the patient perspective?
JEN: Some companies or researchers will reach out to existing patient communities. An example of that would be online communities that patients use to provide peer to peer support. What’s challenging with this approach is that not all patients engage in these support activities, so there’s a selection bias here. Same goes for reaching out to key opinion leaders. This is not to say that these groups aren’t important to engage, but it should be noted that it may not be representative. The industry needs to do a better job of engaging diverse individuals so that we can innovate for all, rather than a subset of the population.
INTERVIEWER: That seems like a natural segue to what you’re doing now with Savvy Cooperative. Can you tell me a bit about how that got started?
JEN: Certainly! Savvy Cooperative was really born out of my personal experience. I have grown up with chronic illness, specifically juvenile idiopathic arthritis. I am very open about my condition, so my professional colleagues started asking me to serve as a patient representative on various projects and committees. But I am just one of 54 million Americans with arthritis, so when I kept getting asked to be that sole patient representative, it really signaled a diversity issue, which stems from an access problem. I am white. I have Ph.D. and I live in New York City. I couldn’t possibly be representative of the whole patient population.
So I started taking more the role of a liaison. I’m very active in my patient community and on social media, so would post opportunities for patients to give input on Facebook, and in my patient community. I was flooded by responses from other patients wanting to share. Nobody had ever asked them for input before, and they wanted to be heard.
I had this “aha” moment: The professionals need to hear from patients, but they don’t know where to find them. The patients actually want to contribute, but they didn’t know anybody cared. It’s not rocket science here, I just wanted to bring the two sides together and create best practices around engaging patients. So that was the genesis of it all.
INTERVIEWER: That’s awesome. How have you gone about making sure more patients have an opportunity to engage and share their insights?
JEN: We really wanted to make sure the gigs Savvy posts are accessible to everybody. We post the opportunities transparently, for all to see so that anyone can seamlessly find ways to engage and give input. We didn’t want these opportunities to be lost inside patient support forums, which may exclude those who aren’t engaging in such a capacity – whether it’s because they don’t have time balancing multiple jobs or family commitments, or they just don’t want to participate in patient communities.
INTERVIEWER: I love this focus on accessibility and transparency, and am curious about how you’ve put these ideas into practice. What can a patient expect if they wanted to use Savvy to find ways to share their experience with innovators?
JEN: There are a number of ways we try to make it very democratic and transparent. We have this virtual bulletin board where people can go and see the opportunities, what we call “gigs,” to participate in. We list the general eligibility criteria, and if they see something they’re interested in, they can easily apply to participate. If not, then they can just keep their eyes peeled for when the right one comes along. We post new gigs every Monday and members received these in their inbox. We make it as easy as possible for everyone to have access to opportunities to contribute.
In an effort to engage more individuals, we also work with local community groups who perhaps have not had an opportunity to share their perspective in the past. We also empower our members to take a more grassroots approach to reach out to their communities. We want to make sure we engage in culturally sensitive ways, so our members can do that more effectively by bringing opportunities to their communities themselves.
INTERVIEWER: Awesome. Who in the industry do you think benefits the most from talking to patients?
JEN: Really, everybody. Anyone with the end goal of helping patients should be working to understand how what they do drives outcomes. One area that I find particularly interesting is digital health. There’s a massive number of products being built in the space, as evidenced by the $11 billion in investments last year.
That said, if we’re going to cut through the noise and really help patients, we have to be developing products that can seamlessly integrate into a patient’s life and produce a meaningful impact.
There are a lot of companies out there that might have what they think is a brilliant idea, but when their product hits the market, they don’t understand why patients aren’t using it. It’s then they may actually do some research and find that it doesn’t solve a real problem, or it’s too cumbersome to use. That’s where I feel there’s a lot of waste happening – waste that could be avoided by just asking patients.
INTERVIEWER: That makes a whole lot of sense!
JEN: Yeah! I may have a biased perspective, but I do believe that the future of healthcare is co-designed with patients. We have to find mechanisms to incorporate the patient perspective across the board, at every step of the R&D journey, as well as throughout the commercialization process.
We need to make sure we create things that are going to work within the patient’s life and solve their problems, rather than just shoving more apps and tech at them. This can lead to added headaches and hoops they have to jump through. If we aren’t solving for patients’ needs, then we’re just wasting everybody’s time and money.
Don’t start building something unless you can validate that it is something that that particular community wants and will be helpful. That’s the way that I hope healthcare will continue to develop: it’s the human-centered design approach.
Want more perspectives?
- Read Part 1 of our conversation with Jen Horonjeff
- See what Pat Dunn of the American Heart Association had to say about health literacy
- Check out VP of Member Services M’Kayl Lewis’ perspective on the Social Determinants of Health