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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bellerophon Therapeutics & CVS Health.

Tom Krohn - phaware® interview 192

Sep 25, 2018

Tom Krohn is the Chief Development Officer at Antidote. In this episode, Tom details a collaboration between phaware global association® and Antidote Technologies to accelerate lung disease research. This partnership provides pharmaceutical companies with end-to-end clinical trial recruitment services through an extensive network of patients with chronic lung diseases. Tom is an experienced executive leader in multiple healthcare and IT settings including sub-Saharan Africa development, US hospital and retail pharmacies, and the pharmaceutical industry. He has a personal passion and commitment to use his talents to serve the marginalized of society.

My name is Tom Krohn. I work at a company called Antidote and we're a digital company helping patients connect to research and researchers connect to patients. Because, unfortunately, there's still a big gap and that's a gap we're trying to close.

My background is in pharmacy. In fact, I grew up in a small-town drugstore in small-town North Dakota. I've been in medical throughout my career, which is about 30 years at this point. It's been a mixture of international development, so I was fortunate to live and work in Madagascar for 10 years, helping build a nonprofit organization there. I came back, got back into hospital practice; I've worked in hospitals and in pharmacies. Fundamentally, I really got convinced that the challenges of health care were really the systems and the management of health care. I felt I had gifts in those areas. I pursued a graduate degree down in Texas and eventually landed in the pharmaceutical industry.

I worked actually at Eli Lilly for 13 years. Throughout that time, it was always in the clinical and regulatory space, especially clinical trials in changing and innovating in how clinical trials were done. Not so much from the scientific point of view, but from an operational point of view, from a business operations point of view and then, importantly in the latter four or five years at Lilly was about external engagement, particularly working with patients differently.

One of the fundamental things we held to was listening, and listening to patients. What's the perspective from a patient? Unfortunately, it's true that once you're in the industry or you're a researcher, you tend to think through the lens of your science, maybe your study, maybe your site or your hospital. It's important to really think through the lens of what it's like on the other side, particularly for patients?

One of the things we clearly heard... we actually brought in patients and did a variety of workshops, etc, was that practical reality is patients are not looking for a specific study. They're not looking for a Lilly study or a Johns Hopkins study. They're looking for a study that might help them. The assumption here is that these are patients who are not having their healthcare met by standard of care. That's not unusual in rare disease, it's not unusual in diseases that are complex. So oncology and cancer is a good example of that, where unfortunately the diagnosis of those diseases is a tough prognosis. It's a tough outcome.

The new therapies are really coming through research. But how do you think of that from a patient point of view? We focused in on really listening and practical aspects are things like, it's hard for patients to find studies that are relevant to them. That's because researchers generally communicate from a scientific point of view only, from a my study point of view and, arguably, a lot of the research is communicated publicly for the sake of compliance; because they have to. That's very important for the transparency initiatives and such. But it's really not to help patients to engage.

So we thought about it and worked on how do we help patients understand their options? We actually built some technology that allowed us to automatically match patients to trials. The patient knows their profile. Why can't we help them find a study, any study? Not only do they want to find them, they want to understand them. How do you engage patients from their point of view? Often it's a nomenclature or a language challenge. Yeah, it's science and there's still a lot of scientific concepts, but there are ways to do things in an interactive way with patients.

An example that I typically use is if I were talking to a nurse, she would ask me if I've had a heart attack before. She would not ask me if I've had a myocardial infarction. So the language we use often is a barrier or it can be used in a way to help patients engage and understand. Ultimately, to us, a big part of that is not only do you have information but what can you do with it? That's how do you take it to the next steps? How do you take it to your doctor to talk about it? How do I understand where the hospitals are that are running these and I can go learn more about these studies? All kinds of next steps. Because it's one thing to be aware, but it's much more to actually engage and be able to follow through.

We focused on that. Ultimately, we've had some good success and Lilly chose to spin out the technology, the platform, the process that we had primarily because Lilly was not in the service business, Lilly is in the drug development business, and it could not represent all the studies out there. If you are serious about serving patients first, you have to give them all the options. So that technology and capabilities was literally sold to a company called TrialReach, which is now Antidote. We just renamed ourselves. Myself and three of my colleagues actually chose to leave Lilly and continue what we started because we believe in what we're doing and there's such a great need here.

So we're involved in bringing that to people. We do that through partners. We're honored to be part of phaware's community and be in a partnership with them to help serve their constituents. But we actually have over 250 of these type of partners. It's because we take on the challenge of bringing order to trials and we make it available to partners like phaware global association®.

It's really to help patients and to close this gap between patients and research. It turns out the problem is just as much on the other side as well. Researchers have a hard time finding patients and we help researchers connect to patients, as well. In fact, if you look at PH, (pulmonary hypertension), there are over 90 studies currently recruiting or about to recruit in the U.S. If you look at how many patients they need, they need 21,000 plus patients just to fill the U.S. studies. Well, there's estimated to be 30,000 PH patients in the U.S. That's over 60%/70%, of all people with a known diagnosis of PH are necessary to participate in the studies.

The point is there's a real demand on the research side and we know that patients with tough diseases like pulmonary hypertension are interested in the new therapies, are interested in new options. We're really here to close the gap between the two.

So Antidote has made a capability we call Match™. We bring order to the clinical trials. We actually start with clinical trials.gov and then we have a team and some capabilities to bring clarity to all those rules. In fact, there are over 2000 ways to say the patient cannot be pregnant. So we have to bring some order to that. So that's what we do and all that's on our side. Fundamentally, a patient, if they came to phaware.global/clinicaltrials and they saw what we call the Match™ widget or the link there, they would be brought into a Match™ environment as if a patient walked into a hospital and wanted to talk to someone about what studies might be relevant and what research. "I'm still struggling and I'm interested in research options."

The interaction with the hospital person, let's say it's a nurse, would not be presenting them with a set of rules. The nurse would start to ask a series of questions. "How old are you? What diagnosis do you have? We've got hospitals around the area, or a network around the area, how far are you willing to travel?" Then they'd start to get into the questions that are more specific to the studies and that's fundamentally what our Match™ does. It presents questions to patients and as they answer questions, depending on their answer, it removes the studies which are no longer relevant to them. So if it's only for pediatrics and you tell us you're 40 years old, those pediatric studies for kids are not relevant to you. As you answer questions, you get fewer and fewer studies, and you can watch the number go down.

What's important is those studies that remain are still relevant to you. So it's not a recommendation engine. What it is, is really especially to take the noise out of the system, is the way I like to think about it and help patients understand their options. Those parameters can be changed: I'm willing to travel farther, all those type of things. But ultimately it's helping patients understand their options. That our Match™ process. Then, if you click through, you can then see which hospitals (we call them sites in the business) are running those [trials]. Because it may not be the hospital here but it may be five miles away or whatever, within the tolerance of your distance. Ultimately, you're getting options to be able to execute and engage in those options.

We are on a journey to cover all studies. We keep our platform up-to-date every night and if there's a change, if there's a new, if there's a subtraction, whatever it is, we're keeping our platform up-to-date because currency really matters and it matters to patients. Our goal is clearly that instead of thinking CT.gov first, you think Antidote because we are basically clinicaltrials.gov but now easy to use, easy to understand and clear calls to action. We don't think about bringing people to Antidote but we think about bringing trials to where the patients are. It's why we have our partnership network. I think over time, you'll see us fill out the rest of the studies across more and more rare diseases in different therapeutic areas, and help patients wherever they are to find the research that's relevant to them.

We've worked closely with phaware global association® leadership, its communities, its researchers, and we're always looking to improve our product, looking to improve our service for patients. That helps both patients, it helps researchers find patients, all that's involved there. So we're glad and honored to be part of the PH community just like we are with other communities. We'd welcome the opportunity to work more closely with you. If you have ideas to improve it, bring it on.

My name is Tom Krohn, and I'm aware that I'm rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware @antidote_me @accpchest