As Chief Instigator of The Unpatient Revolution, I made the foray into the health-care space from a non-clinical background. Attempting to create solutions in a well entrenched, complex space with no direct academic subject matter background may seem impossible. But I believe we “outsiders” likely and literally are able to apply a true beginner’s mind in designing fresh solutions to health care challenges.
I’ve made it my informal practice to scour the industry landscape for established and emerging non-clinicians who are disrupting and re-making the health industry. Pondering their process and observing their accomplishments help me know what is possible. These maverick mavens who are upending the industry demonstrate remarkable boldness, creativity, ambition, and courage. Their work is inspiration for aspiring health innovators from many backgrounds, of which an entire generation appears to be rising, together grappling with how to make the most of the unique opportunities that come from multiple simultaneous Gutenberg moments.
One of my favorite places to look for great outsider-disruptors is the Exponential Medicine (XMed) Conference, one of the top health and technology innovation conferences in the world. It is held yearly at the Hotel del Coronado in San Diego. I’ve been attending and/or following XMed since 2013, when it was still called “FutureMed.” From the beginning, I’ve been taking particular notice of individuals who started off with no medical or related background but are now movers and shakers in the space. Majority of XMed faculty are physician scientists, overwhelmingly MDs, many MD/PhDs, some RNs as one would expect, but a few, a significant few with none of the familiar suffixes to their names, are transforming the industry. I credit the Executive Director of Exponential Medicine, Dr. Daniel Kraft and his team for selecting faculty that includes a growing minority of non-clinician innovators. XMed takes the mantra of interdisciplinarity seriously and itself ventures out of traditional silos into brave new ways of making health care radically better.
I define the term “non-clinician” broadly. These are individuals who did not graduate with an MD, MBBS or RN or any medicine related or life sciences degree at the undergraduate or graduate level. That means physicians, nurses, NPs, PAs may not be in the list. Research scientists or engineers in any of the life sciences may not be included in this list. People who have received education as clinicians or therapists of some kind such as clinical social workers or even psychotherapists may not be included in the list.
These 10 individuals were selected from the faculty of the Exponential Medicine conference held last month (November 2018). To be sure there are others, even from previous years of XMed conferences, and I would be remiss to not mention two powerful standouts in this category: Robin Farmanmaian, entrepreneur, angel investor and author of the book, “The Patient as CEO: How Technology Empowers the Health Care Consumer”; and Dr. Jessica Richman, Oxford trained DPhil in Computational Social Science and Co-Founder and CEO of a leading and history making microbial genomics company, uBiome. But they would be the subject of another piece.
Here’s my list of top 10 outsider-disruptors from #XMed 2018:
10. Jamie Metzl, Senior Fellow, Atlantic Council and & Author of Hacking Darwin: Genetic Engineering and the Future of Humanity
When Jamie Metzl came to talk on the Xmed 2018 main stage, he apologized for sounding a bit hoarse, as he felt a bit ragged having ran the New York marathon the day before. He then launched into his talk articulating his understanding and vision on the future of humanity framed by rapid developments in AI and multi-omics. Jamie says that the most advanced developments in both AI and Genomics today and their applications in healthcare represent only the Pong phase of how these technologies can potentially impact human life. I believe he is referring to Pong, one of the earliest computer games, originally manufactured by Atari in 1972, as a metaphor for being in the beginning phase of a technology.
He then talks about embryo selection, which sounds about as benign as IVF but possibly at the cusp of crossing some ethical boundaries. Then Jamie started to talk about embryo mating. Imagine a 5 day old embryo mating with another embryo to produce another embryo. Apparently this is possible. It sounded so far-fetched, an Israeli physician on the front row at Xmed stopped him in the middle of his talk and asked him to explain. He didn’t actually explain how it works but rather apologized and told her to catch him after. I’m sure I’m not alone in wanting to know like she wanted to know. He also talked about how it is possible with Crispr and similar technology to make Genomic adjustments to embryos and try to control at least partially the characteristics of the infant human that will be birthed from it.
He is right in saying that we enter into terrifying territory here, because the marriage of advanced AI and multi-omics pushes the boundaries of its application beyond health care to evolution. Therefore we’ll need to ask questions about who we are, to consider our identity as a species. He says health care professionals are very important “nodes” in the conversation that help to shape what actually happens. Health care professionals can help manage the process so that outcomes are inclusive and helpful rather than terrifying and harmful. Jamie is a deep, strategic thinker and true polymath, who can forecast directionally through ambiguity.
I found it valuable when Jamie later in the conference stood to have a conversation with Daniel Kraft and Peter Diamandis the day after the US midterm elections. Jamie suggested that we in the Xmed community need to lead the conversation about all these technologies in our networks and communities as early as possible so that stakeholders and the public become aware of the science and their safety considerations, so that technology adoption does not become a issue when the time comes, when it is most needed. Leery as I am with some of what Jamie predicts, I appreciate that he’s catalyzing a serious conversation on a topic that could deeply impact the future of humanity, ready or not.
Jamie Metzl is a Senior Fellow at the Atlantic Council, Co-Chair of the national security organization Partnership for a Secure America, a member of the Council on Foreign Relations, a former White House Fellow and Aspen Institute Crown Fellow. He holds a Ph.D. in Asian history from Oxford, a JD from Harvard Law School, and is a magna cum laude, Phi Beta Kappa graduate of Brown University.
9. Mariya Filipova, Chief Innovation Officer at Anthem Inc.
According to Mariya Filipova, “The curious mind is the greatest antidote to fear and self-destruction. The curious mind is also a creative mind.” She proves this concept by telling the story of Bertha. Faced with the discovery of a 6 pound, football sized kidney tumor in her body, a “gentle” anomaly she named Bertha, Mariya chose curiosity as a way to deal with her situation. At last year’s XMed (2017), Mariya shared her situation with Dr. Shafi Ahmed, who within 48 hours would be looking at the scans she had shipped to the Hotel Del. This started a process where various XMed alumni and experts started to collaborate on figuring out a solution to Mariya’s dilemma.
Mariya’s thoughtfulness, curiosity and empathy were important factors in keeping despair or depression at bay. For example when told that Bertha would be too risky to excise given her size and vascularity, Mariya “curiously” questioned if it were not possible to somehow lower this risk. The only way to lower the risk of surgery was if Bertha could be embolized, which apparently had never been done before with a tumor of such a large size. Without embolization, Bertha could be inoperable. Against all odds, Bertha was successfully embolized, and eventually completely excised, while somehow saving both of Mariya’s kidneys. Mariya’s story is an example of what happens when exponential thinking and exponential medicine are applied to a seemingly impossible challenge.
Before her foray into healthcare, Mariya worked in credit research at Barclays Bank and more recently at Deloitte with their Global Innovation Initiative on the Future of Work. Today Mariya is Chief Innovation Officer at Anthem, Inc. She helps organizations accelerate their digital transformation by deploying the full potential of exponential technologies and business models to optimize their talent, product development and revenue generation capabilities. In Healthcare, Mariya curates high performing ecosystems to identify, pilot and scale initiatives that transform care management and delivery. Mariya holds an MBA from Harvard Business School and a BA in Economics, summa cum laude, from Mount Holyoke College.
8. Parker Moss, Health Technology Entrepreneur-in-Residence at two Fidelity backed funds, F-Prime and Eight Roads
Vanessa Moss, a beautiful 9 year old child who loved to sing and who sang beautifully, passed away in 2017 after a 5 year battle against neuroblastoma, a cancer found in the adrenal glands. She had been diagnosed when she was 4 years old and had spent 800 nights in the hospital bravely enduring multiple procedures and clinical trials. Her father Parker Moss, slept in the hospital watching over her all 800 nights.
Parker is a former telecoms executive who had no previous health care industry experience. Before 2012, Parker Moss held roles such as: Vice President for Strategy & Marketing for Alcatel Lucent’s global wireless & IP divisions; Prime Minister’s Strategy unit on telco policy; Head of Strategy for the GSMA; Telecom Equity Research at Sanford Bernstein. His journey as devoted caregiver to Vanessa birthed a passion in Parker to transform the health industry, becoming the impetus to a major shift in his career. Today, Parker is Health Technology Entrepreneur-in-Residence at two Fidelity backed funds, F-Prime (Biotech & Therapeutics Fund) and Eight Roads (Tech Fund) where he focuses on Series A&B Health Technology Venture opportunities in Europe & Israel. Parker’s specific area of investment focus is Genomics & Informatics – looking for companies that will accelerate the translation of molecular insights in cancer and rare disease into the clinic.
He’s also working with Dr. Jack Kreindler MD, Founder & Director of The Centre for Health and Human Performance on the Baroness Tessa Jowell Brain Cancer Mission and the UK National S.M.A.R.T. Grid for cancer. Parker wants to see a better strategic approach to the evolving heterogeneity of cancer, and suggests that dealing with a challenging cancer be treated like a chess game. This calls for an adaptive trials program where multiple steps are planned ahead of time, where intelligence is drawn from a growing dynamic system that delivers evidence, bolstered with the application of AI and multi-omics. As a strategy geek and a stage 4 cancer survivor, Parker’s ideas are like music to my ears. Parker Moss acquired his education in Physics, Economics and Philosophy from Durham University.
7. Mette Dyhrberg, Founder and CEO of MyMee
Mette Dhyrberg is a trained economist who would not accept the status quo for dealing with auto-immune disease, a health issue she herself was diagnosed with as a teenager. The current standard of care in the industry for auto-immune disease almost always involves the use of drugs, which Mette says is largely ineffective and can even lead to organ failure. She mentions Selena Gomez who after treatments required a kidney transplant. Her own doctors did not paint a rosy picture of her future. Mette would not accept their pronouncements however, and decided to take matters into her own hands. As a trained economist, she applied Deming’s business optimization process to her own body and used data analytics to solve her own health issues.
Today Mette is a master diagnostician of auto-immune disorders through the use of pattern recognition and causality in data analytics. Her company MyMee helps auto-immune patients by generating personalized N=1 recommendations based on their own data. Several patients who have gone through MyMee’s program have partially or completely reversed their condition. One patient who had been on disability and unable to work for nearly 2 decades, after going through MyMee’s program was able to return to work as a full-time teacher.
Moving forward Mette would like to bring machine learning and AI into her practice and MyMee, which in its current form is already quite disruptive, achieving significant health improvement for patients that had not been achieved by drugs or the current standard of care. Mette Dhyrberg holds an MsC in Economics from Aarhus University in Denmark.
6. Matteo Lai, CEO and Co-Founder of Empatica
Matteo Lai’s experience prior to starting Empatica, a company that designs and develops wearables that function as intervention and care tools for neurological diseases such as epilepsy, includes working as an Architect, IT Director, Creative Director, and Product Designer. His intellectual/professional journey as he moved from one point to another is very interesting. Educated in Italy and England, Matteo holds five separate bachelors and masters degrees in Architecture, Interior Design and Computer Science. He holds a double Masters in Architecture, and a Masters in Innovation Management from Alta Scuola Politecnica. The most recent degree he acquired is a BSc in Computer Science from Goldsmiths, University of London, earned in 2013.
One could imagine how he must have pulled from his rich multi-modal background to create “Embrace”, the beautiful sleek smartwatch that can sense, record and monitor adverse neurological events notably epileptic seizures. The design of Embrace is such that you can’t tell that its a medical device at all, which is what Matteo talks about in his speech at XMed this year. He urges our community of innovators to think about the patient, and what is best for them, and often that means making the technology invisible. To paraphrase: You can make the technology disappear, while it still does its work.
Matteo’s speaking style is somewhat low-key, but every point he makes packs a punch. Matteo reminds me a bit of Steve Jobs in the sense of how Jobs helped ideate the iPod and iPhone series, which felt simple and sleek on the outside, but what must have been complex to create. Jobs was also a stickler for design who constantly pushed the envelope on a seamless user experience. That’s what “Embrace” looks like to me. The difference is, “Embrace” can save the lives of millions of people suffering from a neurological disorder like epilepsy.
“Embrace” has also been approved by the FDA as the first SmartWatch for use in Neurology. It might be the first time an actual trained architect (different from a software or hardware architect, though Matteo seems to have become those as well) created and shipped such a product. As someone with a loved one managing epilepsy as a chronic condition, I am so glad he did.
5. Onno Faber, Rare Disease Warrior and Founder of RDMD
When Onno Faber was about 10 years old, his mother complained about the bits that flew around when he clipped his nails in the kitchen. Onno displayed his talent for solving problems even then by designing a different kind of nail clipper that would stop any bits from flying. That nail clipper design, created by a 10 year old Onno was eventually patented. Onno says he has always loved to go after problems that way.
At 17, Onno had already started his first internet company. After studying architecture, he went back to working in technology. Onno moved to San Francisco as a startup entrepreneur in his early 30s, touting his creation, the mobile app “TapTalk, which he says is a new way of doing messaging. It was at this time that suddenly the hearing on his left ear went awry. As it progressively got worse, Onno sought help from doctors in the US, Berlin and the Netherlands. An MRI scan revealed a tumor, that was later identified as a rare genetic disorder called neurofibromatosis type 2 (or NF2). Half a year later, another MRI showed not just one but three tumors, including one in Onno’s spine. These tumors were benign but very dangerous as they could permanently take away Onno’s hearing, eyesight and mobility. Since NF2 is a rare disease, Onno’s doctors are not able to provide a lot of good treatment options.
So Onno took matters in his own hands, and enlisted the help of his friend who had just purchased a genome sequencing machine. After Onno’s tumor excision surgery in 2015, the excised tumor underwent full genome sequencing. Onno took that data and used analytics to research how to approach his treatment. Taking it a step further, he helped organize a hackathon backed by Google where 400 hackers competed for 150 spots. Hackathon participants were divided into teams who analyzed Onno’s genomic data and came up with actionable insights. Onno calls it one of the craziest experiences of his life. (I believe he means in a really good way. Geeks know.)
As a patient and founder living with NF2 Onno responded to his challenge the way a founder would, and that is to start a company to solve the problem. Onno wanted a company that would have a genuine drive to accelerate drug development for rare diseases. So Onno co-founded RDMD with Nancy Yu, who had been head of corporate development at 23andMe. Onno is Chairman and Head of Product at RDMD. Nancy is CEO. Onno wanted to build a platform where patients can aggregate their own data, inclusive of full genomic information, and have it analyzed by RDMD. It would also be a platform where unstructured data from medical reports can be analyzed and interpreted for usable information and insights. Onno actually coded the first version of RDMD himself and then re-coded it to be HIPAA compliant. Right now the platform is specific for NF diseases, but may be rolled out to all other rare diseases later on. RDMD is going to be such a godsend to research as it would be able to aggregate insights from multiple patients with deep data plugged into the system. RDMD is backed by Lux Capital, Village Global, First Round’s Healthcare Co-Op, Garuda, Shasta Ventures and a number of angel investors.
Meanwhile Onno is still living with his condition, and could probably use his platform and its benefits just as much as anyone dealing with rare disease. I myself was diagnosed with a rare form of cancer and I hope eventually I can use RDMD or a platform like it because right now it is such a struggle to see the patterns and connections from several disparate and sometimes inaccessible sources of patient data. RDMD truly has such a revolutionary approach to patient engagement that can accelerate research on rare diseases. For more information, take a look at the trilogy of articles Neo.life published on Onno: Part 1, Part 2, and Part 3, or check out his website. Onno is an MSc in Architecture, with honors from the Delft University of Technology in the Netherlands.
4. Mei Mei Hu, Co-Founder and CEO, United Neuroscience
I wondered about Mei Mei Hu after watching her presentation live at Xmed and then a few times from reviewing the recording. I also viewed her talk last August when she spoke at the Singularity University Global Summit. She sounds like a scientist and a strategist, but it wasn’t clear to me contextually how she became the entrepreneur who’s transforming modern vaccinology. She sounds like she can be an MD/PhD. Turns out Mei Mei graduated with a BA in Economics, magna cum laude from the University of Pennsylvania, a JD from Harvard Law School, and from the General Course at the London School of Economics.
So where did the interest and passion for vaccinology come from? Perhaps a clue is that her mother was the scientist who invented the vaccine to make boar taint (or balls) disappear from male pigs, a successful vaccine that is produced and consumed at scale. Talk about “mothers who scare dates away” says Mei Mei. It’s a story she tells to illustrate how United Neuroscience could potentially do the same thing for neurological diseases using a new class of medicines called endobody vaccines. Endobody vaccines are fully synthetic and train the body to safely and efficiently treat and prevent neurological disease. Currently they are in clinical trials for Alzheimer’s disease and shortly thereafter for Parkinson’s disease. She is passionate to create a true Vaccine Revolution 2.0 from which will emerge new, safe, and effective vaccines that is accessible to everyone, and she means everyone, worldwide. Quoting her talk: “The greatest leaps in humanity are when we are able to treat everyone equally.”
Mei Mei is a member of the executive committee of United Biomedical, Inc., a member of its Board of Directors and previously co-CEO. During that time, she oversaw the launch of one of the first endobody vaccines in the world and the successful spin-out of three companies. Mei Mei is formerly a consultant at McKinsey & Company, where she advised pharmaceutical companies on strategic, operational and organizational issues. Prior to that, she was in the Securities group at Cravath, Swaine and Moore. Mei Mei is also co-founder of an investment and advisory group with active investments in real estate, energy and life sciences. Mei Mei Hu is one of the co-founders of United Neuroscience and serves as the company’s Chief Executive Officer and a member of its Board of Directors.
3. Dave deBronkart a.k.a. ePatient Dave, Patient Advocate Extraordinaire
Dave deBronkart is probably the most famous patient voice that’s rocked the health industry in the last decade. At XMed this year, Dave makes an appeal to the audience to “liberate the data” and in so doing “give patients power to save their own lives.” Famous for the phrase “Gimme my Damn Data”, he reprises this battlecry with a new one that comes with a hashtag: #WeAreNotWaiting, a phrase first penned by patient-innovator Dana M. Lewis. With her boyfriend, Dana co-created an open source artificial pancreas to help manage her own diabetes, a remarkable solution that other patients can build on their own if they wished. They have made blueprints on how to do it, and made them publicly available. Solutions that are reported to work, with no doctors involved.
Dave puts forth the reality that when patients and the people who love them get the proper tools and data, they can create their own health interventions that actually work. They are not going to wait for the industry or physicians to solve the problem for them, thus the hashtag #WeAreNotWaiting. Dave asked the Xmed audience to support this movement and not hold it back.
I honestly wanted to stand on my chair and shout, ‘Yes, this is exactly what needs to happen! Dave deBronkart has done it again!’ How well he represents the community of patients whose lives are at stake and that want to do everything they can to help themselves and their loved ones. I could sense in the silence and the thick atmosphere as he spoke that there were minds and hearts being challenged and possibly old paradigms being shattered. I just loved it, it was invigorating!
The image behind Dave in the photo above is of Tim Berners Lee giving a TED talk in 2009 where he got the crowd to chant “Raw Data Now”. Dave says he got his Ted Talk audience to chant “Let Patients Help” as a riff to Berners-Lee’s chant. Dave then quotes by Mr. Berners-Lee, the creator of the World Wide Web, “When you connect data, you get power.” A powerful end to a profoundly true message. And so direly needed, for only 1% of healthcare venture capital goes to projects that help patients to analyze and manage their own data (all of it) and that help them to manage their own health.
Dave, though hired as Visiting Professor of Internal Medicine at the Mayo Clinic in 2015, and having keynoted 600 health related events worldwide, is not an MD. Dave graduated from MIT with an SB in managerial psychology. I guess one could argue Psychology falls under life sciences, but managerial psychology is not the therapeutic kind. Dave is a pioneer and a trailblazer that shows us how someone with no clinical background can make a profound impact on a medical industry suffering from inertia.
2. Naveen Jain, Founder and CEO of Viome
Naveen Jain is a successful serial entrepreneur who goes after “Moonshots.” And I mean that literally. His company Moon Express is the only venture of its kind that has permission to leave earth’s orbit and land on the moon with a goal “to harvest planetary resources and to develop infrastructure to make humanity a multi-planetary society.” He also is pursuing a figurative moonshot in the health space with his company called Viome, which aims “to make illness optional.” Viome uses AI to analyse a patient’s microbiome data to come up with personalized nutrition recommendations that can vastly improve one’s health. Whether or not the patient follows the recommendation is the optional part. On the subject of innovation, Naveen asserts that experts can become experts to the point of becoming useless. He says that the most experts can improve a system or technology in the health space might be 10% or 15% better, but if you want a 10x or 100x improvement, you need people who challenge the foundations.
“I know nothing about medicine. And that’s the reason I’m the most dangerous person disrupting this industry you’ve ever met.”
Jain is a BS Industrial Engineering graduate of the Indian Institute of Technology and an MBA in personnel management from XLRI Jamshedpur.
1. Mary Lou Jepsen, Founder and CEO of Openwater
If I held a contest for most disruptive technology that could transform cancer care, I’d give Openwater first prize. Openwater is technology that makes obsolete the huge bulky MRI machine in a hospital and replaces it with a light wearable. Using red or benign near infrared light to see into the human body, Openwater uses holographic technology and ultrasonic scanning to produce images and scans at higher resolution than its bulky expensive predecessors, and at 3x magnitude lower cost.
Mary Lou Jepsen draws from her industry making experience as engineering executive in Intel, Google, Facebook and Oculus and her work as a entrepreneur, inventor and professor to create and catalyze this next generation of imaging. Openwater technology has the capacity to see to the level of the neuron, which is about a billion times better resolution than present technology. This kind of imaging, which does not carry radiation is very safe to the patient and completely noninvasive. The technology also has the capacity to deliver treatments such as ablating tissue or delivering drugs through focused ultrasound. Openwater has many applications to diagnose and possibly mitigate not just cancer but also heart and brain disease, among others. I’m guessing that the Openwater wearable that scans the brain would yield much more accurate images and even offer treatment opportunities, supplanting SPECT imaging as the diagnostic tool of choice for looking at the biological basis of brain disease, for example.
If anyone can lead this massive transformation in applied diagnostic science, it would be Mary Lou. She is an inventor of over 200 published or issued patents, and has shipped billions of dollars worth of consumer electronics at the edge of what physics allows. She has been recognized with many awards including TIME magazine’s “Time 100” as one of the 100 most influential people in the world, and as a CNN top 10 thinker. Mary Lou Jepsen graduated with an Sc.B. Electrical Engineering (with Honors) and A.B. Studio Art from Brown University, an Sc. M in Media Technology from the MIT Media Lab and a Ph.D. in Optical Physics from Brown University.
Venture capitalist billionaire Vinod Khosla, whose Khosla Ventures invested in both Openwater and Viome, might have made #1 on this list but was excluded because of his M.S. in biomedical engineering from Carnegie Mellon. He made the following prediction during his XMed 2018 keynote:
“Innovation will happen outside the system. Walmart didn’t innovate retail, Amazon did. Boeing and Lockheed didn’t innovate space, SpaceX did. GM and Volkswagen didn’t innovate cars, Tesla did. NBC and CBS didn’t innovate media, Youtube, Facebook and Twitter did. Its very counter-intuitive.“
He also said that in the next 15-25 years, data science, a relatively new discipline, will do more for medicine than all the biological sciences combined. Ponder that for a second.
Lighting a Fire Under Outsider-Innovators
I wrote this piece thinking about a conversation I had with an executive from a giant Silicon Valley company (I’m not allowed to say which.) He’s an expert from an industry outside health care whose job is to develop solutions for health care. He had seen my talk at the recent Health 2.0 conference, and invited me to have an informal chat at their campus. So I met with him and another person from his team, who is also without healthcare experience. We three had a terrific conversation about unaddressed needs, pain points and potential innovation in healthcare. I wrote this piece with them in mind, and with myself in mind. I think of every person with no clinical or life sciences background but who wants a chance to upend health care at this moment, when there are multiple Gutenberg moments happening at the same time. I hope this piece inspires, builds confidence and catalyzes aspiring outsider-innovators to take the plunge and move full speed ahead.
Vinod Khosla says that most of what medical schools are teaching today will be irrelevant in 15-20 years. That the health care of tomorrow will only be 20% doctor included. Each statement to me sounds like tremendous opportunity. I believe that we outsiders are not only able to apply our skills, knowledge and disciplines to solve even intractable health care challenges, we are in fact, the best positioned to make significant improvements and gains, to radically re-make healthcare. As non-experts, we can, like Naveen Jain says, question every fundamental assumption and generate brilliant solutions. This is our time.
Victoria Ferro would like to thank Lodestar.care, your Health Care Quality Concierge, for sponsoring her travel to Exponential Medicine 2018.
If you like reading this piece, and would like to see more, we invite you to contribute to the fundraise for Victoria’s upcoming multi-media book project: “The Unpatient Manifesto.”
Thank you very for reading! Please do share your thoughts, comments, or questions below. I can also be reached at firstname.lastname@example.org.