[House Hearing, 114 Congress] [From the U.S. Government Publishing Office] SMART HEALTH: EMPOWERING THE FUTURE OF MOBILE APPS ======================================================================= HEARING BEFORE THE SUBCOMMITTEE ON RESEARCH AND TECHNOLOGY COMMITTEE ON SCIENCE, SPACE, AND TECHNOLOGY HOUSE OF REPRESENTATIVES ONE HUNDRED FOURTEENTH CONGRESS SECOND SESSION __________ March 2, 2016 __________ Serial No. 114-63 __________ Printed for the use of the Committee on Science, Space, and Technology [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Available via the World Wide Web: http://science.house.gov ______ U.S. GOVERNMENT PUBLISHING OFFICE 20-833 PDF WASHINGTON : 2017 ----------------------------------------------------------------------- For sale by the Superintendent of Documents, U.S. Government Publishing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; DC area (202) 512-1800 Fax: (202) 512-2104 Mail: Stop IDCC, Washington, DC 20402-0001 COMMITTEE ON SCIENCE, SPACE, AND TECHNOLOGY HON. LAMAR S. SMITH, Texas, Chair FRANK D. LUCAS, Oklahoma EDDIE BERNICE JOHNSON, Texas F. JAMES SENSENBRENNER, JR., ZOE LOFGREN, California Wisconsin DANIEL LIPINSKI, Illinois DANA ROHRABACHER, California DONNA F. EDWARDS, Maryland RANDY NEUGEBAUER, Texas SUZANNE BONAMICI, Oregon MICHAEL T. McCAUL, Texas ERIC SWALWELL, California MO BROOKS, Alabama ALAN GRAYSON, Florida RANDY HULTGREN, Illinois AMI BERA, California BILL POSEY, Florida ELIZABETH H. ESTY, Connecticut THOMAS MASSIE, Kentucky MARC A. VEASEY, Texas JIM BRIDENSTINE, Oklahoma KATHERINE M. CLARK, Massachusetts RANDY K. WEBER, Texas DON S. BEYER, JR., Virginia JOHN R. MOOLENAAR, Michigan ED PERLMUTTER, Colorado STEVE KNIGHT, California PAUL TONKO, New York BRIAN BABIN, Texas MARK TAKANO, California BRUCE WESTERMAN, Arkansas BILL FOSTER, Illinois BARBARA COMSTOCK, Virginia GARY PALMER, Alabama BARRY LOUDERMILK, Georgia RALPH LEE ABRAHAM, Louisiana DARIN LaHOOD, Illinois ------ Subcommittee on Research and Technology HON. BARBARA COMSTOCK, Virginia, Chair FRANK D. LUCAS, Oklahoma DANIEL LIPINSKI, Illinois MICHAEL T. MCCAUL, Texas ELIZABETH H. ESTY, Connecticut RANDY HULTGREN, Illinois KATHERINE M. CLARK, Massachusetts JOHN R. MOOLENAAR, Michigan PAUL TONKO, New York BRUCE WESTERMAN, Arkansas SUZANNE BONAMICI, Oregon GARY PALMER, Alabama ERIC SWALWELL, California RALPH LEE ABRAHAM, Louisiana EDDIE BERNICE JOHNSON, Texas DARIN LaHOOD, Illinois LAMAR S. SMITH, Texas C O N T E N T S March 2, 2016 Page Witness List..................................................... 2 Hearing Charter.................................................. 3 Opening Statements Statement by Representative Barbara Comstock, Chairwoman, Subcommittee on Research and Technology, Committee on Science, Space, and Technology, U.S. House of Representatives........... 6 Written Statement............................................ 8 Statement by Representative Daniel Lipinski, Ranking Minority Member, Subcommittee on Research and Technology, Committee on Science, Space, and Technology, U.S. House of Representatives.. 10 Written Statement............................................ 12 Witnesses: Mr. Morgan Reed, Executive Director, The App Association Oral Statement............................................... 15 Written Statement............................................ 17 Dr. Bryan F. Shaw, Assistant Professor, Department of Chemistry and Biochemistry, Baylor University Oral Statement............................................... 36 Written Statement............................................ 38 Mr. Howard Look, President, CEO and Founder, Tidepool Oral Statement............................................... 43 Written Statement............................................ 46 Dr. Gregory Krauss, Professor of Neurology, The Johns Hopkins Hospital Oral Statement............................................... 64 Written Statement............................................ 66 Mr. Jordan Epstein, CEO & Founder, Stroll Health Oral Statement............................................... 70 Written Statement............................................ 72 Discussion....................................................... 85 Appendix I: Answers to Post-Hearing Questions Mr. Morgan Reed, Executive Director, The App Association......... 102 Dr. Bryan F. Shaw, Assistant Professor, Department of Chemistry and Biochemistry, Baylor Univ.................................. 104 Mr. Howard Look, President, CEO and Founder, Tidepool............ 106 Dr. Gregory Krauss, Professor of Neurology, The Johns Hopkins Hospital....................................................... 109 Mr. Jordan Epstein, CEO & Founder, Stroll Health................. 111 Appendix II: Additional Material for the Record Statement submitted by Representative Eddie Bernice Johnson, Ranking Member, Committee on Science, Space, and Technology, U.S. House of Representatives.................................. 116 SMART HEALTH: EMPOWERING THE FUTURE OF MOBILE APPS ---------- WEDNESDAY, MARCH 2, 2016 House of Representatives, Subcommittee on Research and Technology, Committee on Science, Space, and Technology, Washington, D.C. The Subcommittee met, pursuant to call, at 10:07 a.m., in Room 2318 of the Rayburn House Office Building, Hon. Barbara Comstock [Chairwoman of the Subcommittee] presiding. [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Chairwoman Comstock. Good morning. The Committee on Science, Space, and Technology will come to order. Without objection, the Chair is authorized to declare recesses of the Committee at any time. Welcome to today's hearing, entitled ``Smart Health: Empowering the Future of Mobile Apps''. I now recognize myself for five minutes for an opening statement. There's something we all have, not just us here in this country, but all around the world. The mobile penetration that is growing exponentially every day is very exciting, and it's very exciting when you think about how it's permeated all aspects of our life, but now has the opportunity to help so many aspects. And today we're here to talk about how it can help with health care. There's an app for just about anything we want to do, from finding the nearest and cheapest gas station to depositing a check, and also, of course, with health care. The rapid growth of this game changing technology, and the data, and how we can amass that, is a reflection of the ingenuity of app designers, and the market of consumers ready, willing, and able to take advantage of what technology has to offer in order to be more personally involved in our own health care, and that of our families. When it comes to our health, especially for the younger generation, you know, it might be easy to ignore different visits to the doctor, and we obviously want to make sure every does that, but we really want to put that power back in the hands of the consumers. And mobile apps are a really exciting way we can do that, particularly in the busy two-earner families, who run around with so many things going on, this is a great opportunity to really improve quality of life while making people's life easier to get that health care. You know, it can be difficult to make an informed decision about your health, but with the abundance of health apps, and wearable technologies which cover a wide variety of diseases, and chronic diseases, we can now exercise more control by availing ourselves of that data. The data also benefits those who might suffer from an ailment or a chronic disease. Whether it's cancer, epilepsy, or diabetes, the more data we have about ourselves that we are personally aware of, and how we are going to share and amass that data. I was just at the Milken Public Health Summit that's being held in Washington today, and it was really exciting to see all aspects of health care, but the mobile technology, and what we are going to do there, and how we can amass data, and--for example, they talked about people who have cancer. They said 75 percent of them would be happy to share their information if it would allow them to access data, and get information, you know, for themselves, and for their doctors to see, you know, what they, you know, what they might have in common with other people in the same boat. So this new revolution in technology can, and should, open up a new revolution, and all of us being very personally engaged and responsible for our own health care, but also more knowledgeable. You know, it's a great education tool, and we don't have to just go in and see the doctor now. We can be a full participant. It may be--sometimes doctors may not like that, but--we had a witness here earlier this year, talked about a book, which I still have to read yet, which is called ``The Patient Will See You Now'', turning the whole world upside down, which I think is kind of exciting. So our witnesses today are here to talk about technologies they have developed, or are developing, to help individuals take control of their own health care. Two of our witnesses, Dr. Bryan Shaw and Mr. Howard Look, have very personal reasons for their endeavors. Dr. Krauss and his colleagues have embarked on some important research using the Apple Watch and the Apple Research Kit, an open source software framework that may revolutionize medical studies. And Mr. Epstein's technology helps people make informed decisions about receiving care at reduced cost. This ability to save a few or many dollars is something we can all support, both on the personal individual level, and obviously at the aggregate level, with the federal government, with that being one of the fastest growing costs in our budget. As with all new technologies, there are, of course, pros and cons. We'll be discussing them also today. But this kind of research and technology is really exciting, and we want to make sure we in Congress have the kind of policies and help to make sure you could leverage and do this in the best way possible, and have faster cures, as the Milken Institute was talking about today. Faster cures is what we all want. Prevention is obviously another area where mobile apps have a great opportunity. [The prepared statement of Chairwoman Comstock follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Chairwoman Comstock. So I now recognize the Ranking Member of the Research and Technology Subcommittee, the gentleman from Illinois, Mr. Lipinski, for his opening statement. Mr. Lipinski. Thank you, Chairwoman Comstock, for holding this hearing, and to the witnesses for being here today. With well over 100,000 health-related apps available through the Google and Apple app stores, and hundreds of millions of downloads, mobile health apps are increasingly becoming part of our daily lives. The phrase there's an app for that is very applicable to the mobile health environment, and the number of apps is growing daily. Most of us are familiar with, and may even use, one of the popular fitness apps to track our steps and help us with fitness goals. But some people rely on mobile health apps to monitor serious health conditions. The CDC reports that, as of 2012, over half of all adults had one or more chronic diseases. The treatment of chronic conditions accounts for 86 percent of the nation's health care costs. As people are taking a more active role in the management of their health, they're turning to electronic and digital medial platforms for help. Diabetics can find apps that track their blood sugar levels, cardiac patients can find apps to track their blood pressure, and people that suffer from depression can find apps to monitor their mood. The great promise of these apps is that they have the potential to contribute to better health outcomes for their users. But whether this potential can be realized depends on the quality and reliability of the apps, and the information they contain. For mobile health apps not regulated by the FDA, there is much greater uncertainty. We don't want to stifle innovation, but there are major concerns that must be considered, including the potential for an app to lead to harm. Inaccurate readings, for example, could lead to a life threatening situation. We also need to consider how to address ownership of data, given that information flows between patients and their app providers. Some of these regulatory questions fall outside our Committee's jurisdiction. However, there are parts of this discussion that do fall within our purview, and, in fact, they're very common themes before this Committee, including human factors research, privacy, and cybersecurity. The goal for users of many mobile health apps is to live a healthier life. They may be looking to increase their fitness, to eat healthier, or to quit smoking. Some users, as I have discussed previously, are using apps to monitor and respond to potentially serious chronic health conditions. In all of these cases, there is an implicit assumption that the app will influence behavior in a predictable way, and in some cases assist users in long term behavioral changes. But, as an engineer, I know that we--if we do not incorporate human factors into the design and evaluation of these apps, they may not function as intended, or may even cause harm. This is a very important area of research, one where the National Science Foundation has a role, possibly in collaboration with the NIH. In addition, privacy, and the security of a user's personal information, must be a part of today's conversation. Many mobile health app users trust the information within the app is secure. However, a recent study by a research team at the University of Illinois at Urbana-Champagne found that many free apps use ad libraries as revenue sources, which many expose users' data to these ad libraries. This is clearly a privacy issue, but it could also be a security issue if the app requires a user to enter personally identifying information and/or sensitive health data. Furthermore, in the case of high quality apps that health care providers incorporate into their patient care, we may also want to give the physicians and nurses access to data being recorded by the apps. This brings up more questions about how to keep the data secure. We all share the goals of promoting better health care outcomes and reducing health care costs. Mobile health apps have the potential to contribute to these ends, and so it's very important that we continue down this road. As these apps are being developed, we--make sure we are looking at these apps, and make sure that, in the end, we are doing--at least not doing harm, and hopefully we can do a lot of good for people. So there are many important questions that need to be addressed as this technology continues to grow. I look forward to a good discussion with our witnesses, and I yield back the balance of my time. [The prepared statement of Mr. Lipinski follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Chairwoman Comstock. Thank you. And I'll now recognize our witnesses. Our first witness today is Mr. Morgan Reed, Executive Director of The App Association. Mr. Reed specializes in issues involving application development relating to privacy, intellectual property, competition, and small business innovation. His expertise and knowledge has been sought by the House and Senate in multiple hearings, and his commentary and insight is a--has been featured on news networks. Mr. Reed received his undergraduate degree in Political Science and Chinese from Arizona State University, and a graduate degree in Chinese from the University of Utah. I am pleased to welcome you here today. Dr. Bryan Shaw is our second witness, and he is an Assistant Professor in the Department of Chemistry and Biochemistry at Baylor University in Waco, Texas. Dr. Shaw received his undergraduate degree in Biochemistry and Biophysics at Washington State University, and his Ph.D. in Inorganic Chemistry from the University of California, Los Angeles. In 2008 Dr. Shaw's son Noah was diagnosed with bilateral retinoblastoma. While his doctors initially missed his eye cancer, Noah's mother, Elizabeth, observed a white reflection in his eyes in pictures she took, which ultimately helped lead to his diagnosis. Noah is the inspiration behind the Cradle app created by Dr. Shaw and his colleagues at Baylor University, and I'd like to welcome both Dr. Shaw and his son Noah, who's in the audience with us today. And I understand your--I did get to meet your wife, and your other--your younger son also, so it's delightful to have you with us here today. Our third witness is Mr. Howard Look, President, CEO, and Founder of Tidepool, a Silicon Valley non-profit startup that has developed apps to help people reduce the burden of managing Type1 diabetes. Prior to Tidepool, Mr. Look held technology leadership positions at Amazon, Pixar Animation Studios--might come in handy with the kids here today, right--and as a founding team member at TiVo. In 2015, Mr. Look, who holds a Bachelor of Science degree in Computer Engineering from Carnegie Mellon University, received the White House Champions of Change Award for Precision Medicine on behalf of Tidepool's work. And just last month Mr. Look shared the stage with President Obama during a panel discussion at the Precision Medicine Initiative Summit. Mr. Look's motivation behind Tidepool comes from his daughter, Katie, who was diagnosed with Type1 diabetes five years ago, and I am pleased to welcome him here today. Our fourth witness is Dr. Gregory Krauss, a Professor of Neurology at The John Hopkins Medical Center in Baltimore. Dr. Krauss is a native of southern Oregon, and received undergraduate training at Harvard College, medical school training at Oregon Health Sciences University, and neurology residency and epilepsy fellowship training at Johns Hopkins. Dr. Krauss is the co-inventor of the EpiWatch app, along with his colleague, Dr. Nathan Crone, who is also a Professor of Neurology at Johns Hopkins. EpiWatch research uses a novel data management program integrated with the Apple Watch and iPhone operating systems called Research Kit. It is the first research app to use the Apple Watch. We welcome you, Dr. Krauss. Mr. Jordan Epstein is our fifth witness, and he's founder and CEO of Stroll Health, which makes software applications that help doctors and their patients find and follow through with lower cost, best value health care. Prior to Stroll Health, Mr. Epstein worked on a client services team of Merced Systems, sorry, a business intelligence startup. After their acquisition by NICE Systems, he led development of the small and medium-sized business performance management product line, which today is used by hundreds of thousands of people on five continents. Mr. Epstein's clients have included Fortune 500 companies, such as United Healthcare, Kaiser, Delta Airlines, and Chase. Mr. Epstein holds a B.A. from Carlton College, and I am pleased to welcome him, and all of you, here today. So I now recognized Mr. Reed for five minutes to present his testimony. TESTIMONY OF MR. MORGAN REED, EXECUTIVE DIRECTOR, THE APP ASSOCIATION Mr. Reed. Thank you. Subcommittee Chair Comstock, Ranking Member Lipinski, and distinguished Members of the Committee, my name is Morgan Reed, and I am the Executive Director of The App Association. I thank you for holding this important hearing on empowering the future of mobile health apps. The App Association represents more than 5,000 companies and technology firms around the globe, making the software that runs the devices that you wear, and the apps that you love. We are currently spearheading an effort, through our connected health initiative, to clarify outdated health regulations, incentivize the use of remote patient monitoring, and ensure the environment is one in which patients and consumers can see improvement in their health. This coalition of leading mobile health companies and key stakeholders needs Congress, HHS, and NIST to encourage mobile health innovation and support policies that keep sensitive health data private and secure. Now, traditionally this is the moment in my oral testimony where I would recite some interesting numbers about the industry, talk about jobs created and niches filled, but I'd like to break from tradition and instead tell you a story, one that is likely to be relevant to all of you, and is certainly relevant to a huge chunk of your constituents. Nearly everyone in this room is either caring for aging parents, or knows someone who is. Now, imagine your parents are fortunate and living at their own home, but significant medical challenges are beginning to face them. The questions begin, do I get a home health attendant? Do I pay as much as 12,000 a month to move them to an assisted living facility? Do they move into my basement? And how do I deal with the fact that my parents don't want to move into my basement? And a home nurse feels infantilizing. What do I do to help them stay at home and live with dignity? Well, most of you remember Life Alert. You know, the product with that tag line, help, I've fallen, and I can't get up. That kind of device is commonly known as a personal emergency response system, or PERS. They're great devices, but incredibly limited in what they can do. Now, imagine a far more sophisticated PERS, packed with sensors that can track blood sugar, blood pressure, heart rate, biomarkers for medication adherence, geo-fencing for Alzheimer's patients, and much more. Sensors small enough to fit into a watch, one that connects to the loved one's phone, an alert device, alert service, a physician's tablet, and a medical record. Suddenly, mom can stay at home, maybe another year, two, or three, all while managing her health. And if mom allows the data to be sent to you, you can be part of the solution, staying in touch, and on top of her needs. And, not insignificantly, your basement can keep its big screen TV. By 2050 there will be 83.7 million Americans over the age of 65, twice the number from 2012. 80 percent will have at least one chronic condition. Without question, this age group's rapid growth will severely strain public and private health resources. Therefore, the picture I painted for you is not a pipe dream, but rather imperative to prevent a cataclysmic economic outcome for this boom in aging adults. Moreover, we're already seeing near real time technology making a difference today. One example that we didn't mention was Airstrip as a model of the potential for connected health care. Its apps and connectivity services allow physicians to remotely view live patient data. Emergency medical staff are able to send live waveform data from an ambulance to the emergency room so that a trauma center or cath lab can be readied by the time the patient arrives. The minutes, or even seconds, that are saved by this technology can make a critical difference in a patient's life. So what's standing in the way of this dream? What is needed to ensure everyone can benefit from these new innovations? Well, I have three messages for Congress. One, questions about privacy, security, and government regulation have met to create an environment where companies are worried about making devices more medically relevant. And physicians worry about the impact on their practice. The slow process by which HIPAA has been updated continues to delay uptake, and impede investment in innovation. Two, patients and care providers must know that their information is private and security. Industry best practices around the treatment of sensitive health data, as well as a commitment from government to support these practices, are important to establish trust, and push the industry forward. Moreover, clarifications on government access to data matter, and Congress should be pushing back on any government pressure to weaken encryption, and harm the protections that NIST are trying to establish. Finally, ensuring that doctors are reimbursed for the use of these technologies will be essential. Currently CMS is statutorily prevented from reimbursing for certain kinds of remote patient monitoring based on some absurd geographic restrictions and antiquated technological requirements that were state of the art 15 years ago, but haven't moved since. Success will come when the technology, trust, and means to pay for it all come together. I ask that Congress help ensure that that happens now, rather than see one more of our family members move out of the home they love because we failed to act. I look forward to your questions. [The prepared statement of Mr. Reed follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Chairwoman Comstock. Thank you. And I now recognize Dr. Shaw. TESTIMONY OF DR. BRYAN F. SHAW, ASSISTANT PROFESSOR, DEPARTMENT OF CHEMISTRY AND BIOCHEMISTRY, BAYLOR UNIVERSITY Dr. Shaw. Chairwoman Comstock, Ranking Member Lipinski, and distinguished Members of the Research and Technology Subcommittee, my name is Bryan Shaw, and I am a Professor of Chemistry at Baylor University in Waco, Texas. Thank you for inviting me today to testify on our health care app, Cradle. I want to tell you the story of Cradle, and show you how it works, because I believe doing so will help you continue to make wise policy. Cradle is an acronym for Computer Assisted Detector of Leukocoria. What is Leukocoria, and why would we want to detect it on a smartphone? Leukocoria is simply white eye. It is a white pupillary reflex. You can see an example of Leukocoria on your video monitor. White eye is a symptom of several pediatric eye diseases, including the aggressive childhood eye cancer retinoblastoma, and much more common, but less serious, conditions such as refractive error. One in 80 children will present with Leukocoria because of some type of eye disorder. This picture is of my son Noah at three months old. Noah's Leukocoria was caused by a 9 millimeter tumor in the back of his eye. The Cradle app alerts a parent to the presence of this type of picture on their smartphone. The Cradle app also harnesses the phone's digital camera and LED to convert the smartphone into a crude ophthalmoscope to help a doctor directly examine a child's eye for a white pupillary reflex. Although the appearance of white eye might seem obvious in a picture of a child with eye disease, and although white eye can be observed by a doctor when shining a conventional ophthalmoscope into the eye, white eye often goes unnoticed and undetected for months, for years, by both doctor and parent. These delays can blind, and even kill, children. I know this fact from personal experience. My son Noah, who inspired my team and I to invent Cradle, was born with retinoblastoma tumors in both of his eyes. Noah's pediatrician never caught the Leukocoria during any of his routine eye exams, but his mother did, using her digital camera. Tragically, it was too late to save Noah's right eye, but doctors were able to salvage his left eye with external beam radiation and systemic chemotherapy. We later learned, to our horror, that Leukocoria had been showing up in our pictures for months, ever since Noah was 12 days old, and had we noticed Leukocoria then, we likely would've saved both of Noah's eyes. Unfortunately, our story is common, but Cradle is beginning to make it less common. Since its release for the iPhone in October of 2014, and for the Android in July of 2015, Cradle has prevented vision loss in other children all across the world, and it's done so at zero cost. In two of my favorite cases, parents used the free Cradle app to catch retinoblastoma so quickly, so early in their children, that the children did not require chemotherapy, they did not require radiation. They didn't require removal of their eye, or eyes. They only required laser treatment, and they have good vision. Very quickly, I would like to do a little show and tell by showing you a video of me demonstrating the video ophthalmoscope mode of Cradle on my 7-year-old son, who's in the audience today, and also as a control on my 3-year-old son, who does not have retinoblastoma. If we could see that video? [Video shown.] That's the end of the video. In closing, the Cradle app demonstrates the humanitarian, entrepreneurial, and innovative potential of mobile medical apps. Cradle was created by basic scientists and students in their spare time, with no prior expertise in conventional health screening, other than witnessing its failures with Noah. We were able to provide Cradle to parents quickly because there were no regulatory or cost barriers in our way. Cradle cost under $20,000 to create. We provide it to the world freely. Cradle has already reduced health care costs around the globe. We are now pursuing funding for the clinical validation of Cradle, and plan to apply for regulatory approval. I would be happy to answer any of your questions on Cradle. Thank you. [The prepared statement of Dr. Shaw follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Chairwoman Comstock. Thank you so much, Dr. Shaw. And I think if that video is available for us to put up online, I think all of us would love to do that, and share that with everybody. And thank you so much. And Mr. Look, we'll now hear from you. TESTIMONY OF MR. HOWARD LOOK, PRESIDENT, CEO AND FOUNDER, TIDEPOOL Mr. Look. Thank you. Chairwoman Comstock, Ranking Member Lipinski, and distinguished Members of the Subcommittee, thank you for inviting me today. My name's Howard Look. I'm the founder and CEO of Tidepool, a non-profit open source startup from Silicon Valley. We're building software to help people reduce the burden of managing Type1 diabetes. My story starts five years ago, on a family camping trip. Our daughter Katie had unzipped the tent three times in the middle of the night to go to the bathroom. The next morning she was throwing up and we thought that she might have the stomach flu. Two days later we were told that, along with weight loss, these are the classic symptoms of Type1 diabetes. Katie's immune system had begun attacking her pancreas, the insulin producing cells in her pancreas, and without insulin, she simply couldn't metabolize the energy that she needed to survive. My kids call me their geek dad. At the time my daughter was diagnosed, I was VP of Software at Amazon. Before that, I was VP of Software at Pixar, and I had been on the founding team at TiVo. I knew software and user experience, but I knew nothing about the challenges of health care. Our family quickly discovered what everyone who lives with Type1 diabetes knows. It's a challenging and burdensome disease, requiring hundreds of decisions per day, and constant vigilance. Managing Type1 involves calculating precise doses of insulin, a deadly hormone, based on food, hormones, exercise, illness, and more. Not enough insulin, and you run the risk of ketoacidosis, or contributing to long term complications, like blindness and kidney failure. Even a little too much insulin and you risk severe hypoglycemia, or low blood sugar, which can lead to seizure, coma, or death. Said another way, effectively managing Type1 diabetes is all about meaningful, real time access to data to make the best dosing decision possible. The most popular insulin pump and continuous glucose monitor, these are two devices critical to successful diabetes therapy, come from different manufacturers, and they're incompatible with each other. The software that comes with most diabetes devices is closed, proprietary, and hard to use. It's a little bit like owning a digital camera and being forced to use the terrible software that came with it in order to view your pictures. To make a long story short, I found lots of other people who felt just like I did, and we founded a non- profit, open source startup called Tidepool. Our mission is simple, allow every patient to liberate their own health data from their devices, and in doing so, catalyze an ecosystem of applications to help them more meaningfully engage in their own care. It's still early, but we've already made a tremendous impact. Nearly all device makers have made their data protocols available, and our free applications are currently the only way to visualize data from the most popular insulin pump and most popular glucose monitor in one place at one time. This is our web application called Blip. It lets you see diabetes data from multiple devices. Here we have data from an insulin pump, continuous glucose monitor, and a finger stick meter, as well as contextual notes from your mobile phone. This is another mobile app called Nutshell. It lets you keep track of what you ate, along with the insulin dose that you used, and shows how your body reacted to it so that you can make an even better dosing decision the next time you eat the same thing. And this is a prototype of a mobile application that shows real time blood glucose values combined with location services, allowing parents to know that their child is safe no matter where they are. All of these are examples of a robust ecosystem of applications that can exist when health data is liberated, and the patient can choose how the data is used. Tidepool is not the only patient-led initiative using data to improve standards of care for people with Type1 diabetes. Our family also used Night Scout, an open source project that allowed us to keep--to see our daughter's blood sugar remotely, keeping her safe when she was at a sleepover. And finally my daughter now uses a do-it-yourself system based on an open source project called Open APS, for Artificial Pancreas System. Her devices now work together to automatically deliver insulin based on a software algorithm, allowing her to receive safer and more effective therapy than the usual standard of care. This kind of innovation is only possible when patients have access to their own health data in real time. Real time is a far cry from requests for health data that are fulfilled within 30 days, or that come on paper, or by downloading PDF or Excel files. Medical device companies have the power and ability to publish their device data protocols now. Cloud data services can make that data available to users securely, using modern methods like OAuth and REST APIs. There are no technological, security, or privacy barriers. There are only barriers of fear and uncertainty. We've heard companies say, we're worried about what people will do with the data, or we're worried that people will present the data out of context. Positions like these serve to perpetuate existing standards of care, and limit what an open and vibrant ecosystem of liberated data can achieve. From a regulatory standpoint, the FDA has been extremely pragmatic with guidance documents like MMA and MDDS. They've been supportive of non-traditional quality systems that enable a lean and agile startup like Tidepool to iterate quickly, and we look forward to continuing conversations with the FDA to support non-traditional trials in n-of-1 studies based on distributed and patient-led projects, and to discussing labelling requirements that would allow device companies to publish their data and control protocols without fear of added liability. To summarize, engaged patients should not need to outsmart the very companies that they depend on in order to achieve safer and more effective therapy. Their data should be readily available. The ability to foster and catalyze patient-led innovation and personalized engagement through mobile and web- based health care applications exists today. Thank you. [The prepared statement of Mr. Look follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Chairwoman Comstock. Thank you very much. It was fascinating. It's so inspiring to hear what you're able to do, and--with your personal situation, how you've helped so many, so thank you. And now I will hear from Dr. Krauss. TESTIMONY OF DR. GREGORY KRAUSS, PROFESSOR OF NEUROLOGY, THE JOHNS HOPKINS HOSPITAL Dr. Krauss. Thank you for inviting me, Chairwoman Comstock, and Members--and for reviewing this important topic in the new era of using personal technology to support health care. I think it might be helpful to start with just illustrating the problem we deal with in supporting patients with epilepsy. So could we show a video, and then go to the next slide? And this is EpiWatch, which we're using to detect seizures and alert caregivers when a seizure occurs to help their family members. And I'll show you a typical patient during a seizure in our hospital. [Video shown.] So this is a 17-year-old boy who now--he feels the seizure. 40 percent of people --as their seizure begins--activate a monitoring system. And now the seizure's spreading across his brain. He becomes confused. Now, his father, who's a physician, comes in. He knows something's wrong. Now the seizure's spreading across the brain, evolving into a--here's the staff coming in--towards the end of the seizure--respiratory distress--and so this 17-year-old has seizures like this at school about every two weeks. and they often last up to 10 minutes. And so one need is to have a detector that can warn caregivers of a seizure, and allow emergency intervention to help a patient. An app such as this can also provide a lot of support activity for children. And so we are developing EpiWatch. It uses Research Kit, which is a novel data management program, that's integrated with the Apple Watch. So the app lives on the watch, and when a patient has a seizure, it can be triggered by a caregiver or the participant, and then for ten minutes it collects data. And these watches have sensors, so it can detect heart rate changes, movement changes with an accelerometer, and it has a gyroscope that can detect changes in position. The advantage of the watch also is every minute we can query the patient to perform a tap test, and let us know if they're alert, or if the seizure's ended. And so we can measure the duration of the seizure, movements during the seizure, and heart rate changes associated with seizures, and with that we're developing a seizure detector. Now, the question is, how do you collect data like that to make a seizure detector and do research? And so the advantage of Research Kit is that it's a system that allows anonymized data collection from a national participant pool, and allows rapid research to be performed. So the Research Kit has an electronic consenting system where possible participants--they can read about the research on their iPhone. They can be screened based on their criteria, are they the appropriate age, if they have sufficient seizures. They then are tested for comprehension of the research on the iPhone, and then they sign the consent, and then they receive an e-mail with a PDF signed version of the consent. And so you're able to do mobile e- consenting in a national population very rapidly. And so this is very useful. Once they sign up for the research, they track seizures, and we collect data for ten minutes during seizures, and then encrypted data is transferred to a data system, and transferred to us in encrypted form. And so this Research Kit approach really allows, I think, an explosion of novel research to be performed. First, we're able to study several hundred patients within a month, and capture thousands of seizures rapidly. We can capture seizures from all ages and demographics in the U.S., and we can quickly accumulate data to develop the seizure detector. And so we're using this research to especially focus on serious seizure types, such as this boy's. So, for example, one in 500 persons per year with epilepsy die suddenly, usually of a respiratory death of cardiac arrhythmia, and that's called SUDEP, Sudden and Unexpected Death of Epilepsy. The majority of this occurs during nocturnal convulsions, and so we're focusing initially on close detection of seizures associated with SUDEP. Could you show the slide? And so this is the data we're collecting during a patient who's having a convulsion at night. They're shaking. You can see on the bottom right, that's their heart rate, markedly increasing several minutes after the seizure, when they're in cardiac distress. And so this app--the idea is that it would alert patients' caregivers that they're having a serious seizure type. They can then come in, reposition them, stimulate and arouse them to avoid respiratory dysfunction, and perhaps rescue them. And so this is the goal of the research, and we have the advantage that we can actually test prototypes of the detector on the system, and do a lot of research in a large pool of patients very quickly. So we've not moved on to commercialization of this product. That's our--not our goal. The Research Kit is open source, non-commercial software. All our software will be open source, and so we will be able to migrate our seizure detector and app to other platforms once it's developed. Other questions regarding types of research, and issues of regulation and data security, I think I'll just leave to my written summary. Thank you. [The prepared statement of Dr. Krauss follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Chairwoman Comstock. All right. Thank you so much, Doctor. And now we will hear from our final witness, Mr. Epstein. TESTIMONY OF MR. JORDAN EPSTEIN, CEO & FOUNDER, STROLL HEALTH Mr. Epstein. Great, thank you, Chairwoman Comstock, Ranking Member Lipinski, Members of the Subcommittee. Thanks for having me. My name is Jordan Epstein, and I'm the founder and CEO of Stroll Health, a startup based in San Francisco that helps doctors help their patients find better value health care. We started with the vision that when you go to your doctor, your doctor should do what's best for you, not just what's easy for them, or what they do for every patient, but what's actually best for you based on your insurance, where you live, and how much you can pay. And that's exactly what we do for 300 procedures. In radiology today, when a doctor orders it through the Stroll app, we can show a patient what's in network, what's nearby, what their out of pocket cost options are, and, together with their patient, decide the best place to go. On average we save 30 percent, and 86 percent of the time send patients to lower than average cost care. If Stroll, or a Stroll-like tool, could be used for all non-hospital-based health care decisions in this country, we would save the nation $500 to $700 billion a year. That's a lot. So you would think that the National Science Foundation, or the Small Business Innovation Research Program would want to support this kind of research and development, but you'd be wrong. Stroll applied for, and did not receive, an SBIR grant. And when you look at the average age of an app developer versus the average age of a health related grantee, it's almost double. Too many of my generation are spending their time building apps for ads for mobile and texting, and we need to support those of us who choose to dedicate our time to address some of the toughest problems our nation faces. In developing Stroll, we've come across a number of barriers. The first is we work with hundreds of insurance companies, and the protocols to do that are incredibly complex and arcane. Imagine for a moment if you're on, you know, a U.S. highway, except for--there were no speed limits, and whatever vehicle you wanted to be on, you could. Bicycles, cars, tractors, you name it, right? Traffic would be a nightmare, and that's exactly how the current U.S. architecture, you know, IT health care architecture works. The second sort of problems that Stroll faced were on the regulatory side. So there's a number of regulations, including the Federal Anti-Kickback statute, that basically regulate how companies like mine, that try to improve efficiency and reduce the cost of care, can be compensated. So imagine again, for a moment, you wanted to buy an airline ticket, except there's no Progressive, there's no Kayak, there's no Expedia, right? You have to call each individual airline, and ask for a price, and what's available, and that's exactly how our U.S. health care system works today, and it needs to change. The third sort of roadblock we've run into is just--as a small business that employs highly technical, highly skilled workers, we need to offer health insurance to stay competitive. What I don't understand is why I have to choose those plans for my employees. So imagine again--let's say I wanted to offer a tax free transportation benefit. I could offer my employees a Lexus or a Ford, but only ones that had large cup holders and a V8 engine. That's clearly not best for my employees, right, and it doesn't foster innovation and competition in industry, but that's exactly the sort of decision I have to choose every time I make a health care, you know, plan decision for my patients-- or my employees. So, bringing it back to Stroll, we started with the vision that when you go to your doctor, your doctor can do what's best for you, and five to ten years from now, when you go to your doctor, they'll be able to tell you what's in network, what's covered, and you can leave knowing exactly how much it costs. I look forward to your questions, and thanks for having me. [The prepared statement of Mr. Epstein follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Chairwoman Comstock. Thank you so much. Boy, this is so exciting, to hear from all of you. I really appreciate your expertise, and all the things you're working on. It strikes me, as I hear all of you speak, and certainly with your personal experiences, that this really is going to require some really different thinking. This is sort of the Uber economy and health care. How are, you know, and I have a number of doctors in my family, and I know oftentimes they're like, well, we have to decide, so--the doctor knows best. And this is turning this on its head a little bit, where we're going to use our knowledge and understanding, but also the technology, which is probably more precise in many cases. So what kind of resistance, if any, are you--I think--lot of resistance, so that's very helpful. But what kind of resistance are you seeing, if any, hopefully not much, to this kind of thing, and what can we do to assuage that resistance that the medical field might have? Mr. Reed? Mr. Reed. Yeah. I think one of the things we have to consider, it's very easy for us in the technology industry to say, the doctor is wrong, and, you know, be disruptive, and welcome disruption in their lives. But what I've found is that physicians are as frustrated by the regulatory requirements, and the barriers, and the questions about reimbursement as anyone. The AMA had a recent study that showed a 30 percent decrease in efficiency due the way that the failure of EHRs to be interoperable had created, and, frankly, bad user interface design. So I think we have two real problems that's we're facing with physicians. One, physicians are uncertain about how to accept that data, and the accuracy of the data they might accept. And then, two, what are the liability that extends to them if they accept that data and they don't act on it? And then the overarching question is, if they take the time to review the data, and engage with a patient in that way, how does that figure into their reimbursement? So I know this Committee's jurisdiction touches on the edges, but we are all frustrated with the physicians, but I think I would speak for the--my meetings with the AMA and others in saying that they're frustrated right along with us. Dr. Shaw. What I work on, retinoblastoma, it's highly specialized. So pediatricians, ophthalmologists, they actually know peer reviewed studies have shown that mom, then grandma, then dad, are statistically the first people to catch the symptoms of retinoblastoma. And the primary test that the pediatrician uses, shining a light into the eye, this is called the red reflex test. It's notoriously ineffective, and everybody knows it. So the doctors that we're working with, I mean, they love it. I haven't---- Chairwoman Comstock. Yeah. Dr. Shaw. I haven't encountered any resistance---- Chairwoman Comstock. Great. Dr. Shaw. --from the practicing pediatric, or ophthalmology, or oncology community. Chairwoman Comstock. That's great news. Mr. Look. So Type1 diabetes I think is a great example of this. It's one of the only diseases where you are literally prescribed a deadly hormone, right? If you take too much of it, it will kill you. There's a shortage of endocrinologists in this country. Most endos see their Type1 patients four times a year for maybe 15 or 20 minutes. The other 361 days a year, the patient is on their own. So most endos love engaged patients. Patients who engage with their data and understand what a fine line it is to deliver good insulin doses do better. Chairwoman Comstock. And in terms of the data sharing that was mentioned earlier this morning, when we were talking about, you know, cancer patients wanting to share data and get to share that, I guess, you know, maybe we need to have some legal changes, liability changes, but do you think in that area, as we share that data, you're going to see, like, well, this, you know, so this is the, you know, the person who's done the best with Type1 diabetes, not doing any damage, have done these things, so as you're tracking through, you sort of have a goalpost of all these thousands before you that you can stay in the zone to get, you know, the A level of performance from something like this. Mr. Look. By and large, in the world of Type1 diabetes, there is not resistance to sharing data. People understand that by sharing their data, they're doing better for the community. And when there's a large pool of data, it means that not only doctors can see how patients are achieving effective therapy, but you can even start imagining effective ways of computing insulin doses. When my daughter walks into California Pizza Kitchen and orders the five cheese margherita pizza, she should be able to look on her phone and see how did other 16-year-old girls who ordered that same pizza dose for this effectively, and help to come up with a better insulin dose that way. So, by liberating the data, we allow for more engaged patients, and much more effective therapy. Chairwoman Comstock. And I have to imagine, as a parent, that gives you a lot more peace of mind too. Mr. Look. That's right. Chairwoman Comstock. Yeah. All right. Dr. Krauss. One interesting thing we found is that, actually, patients want to control their own health data. So when we collect tracking data about their pill taking, or the number of seizures, they actually don't want that to go directly to their doctor. They want to receive it, and then show it to their doctor, potentially, and they're quite willing to come in for appointments and have their device optimized. But that's an interesting feature, but it's one that we use also, so we want to optimize our graphing, and show relationships between missed pills and seizures. We have a participant, like me, graph so they can see how other people with the same condition, same age are doing. But that was an interesting finding, yeah. Chairwoman Comstock. Okay. Mr. Epstein. Okay. So bringing it back to, you know, kind of doctors using apps, we actually make apps for doctors, right? So we've encountered lots of resistance. The first is, as Mr. Lipinski pointed out, there's 100,000 apps, right? So are you really going to ask a doctor to use--no way, right? And so basically, you know, when we talk to doctors, we have our own app, but they're like, put it in the EMR. And really kind of--if you think about the EMR as the sales force sort of model, where you basically stick a whole bunch of apps--and the doctors don't even know they're separate apps. It's just a widget within the app, right? And so you have, you know, one for blastoma, you have one for, you know, all these different things, right? So that's kind of, I think, where the future is---- Chairwoman Comstock. So we really need to make that just available directly for the patients, and not having any blocking things? Because the doctors can't possibly know all the things. Mr. Epstein. Or, right, make it easier, so HHS is just putting this interoperability thing, you know, freeing the data to allow doctors to be able to say, look, in my EMR I can control it how I want to control it, with whatever apps that I want, right? So that's exciting. And then when you think about, again, this work flow problem--so, again, if you were trying to diagnose, or trying to use any of these things, you're saying, I have to do a new thing, right, as a doctor. I used to do this, and now I have to do something else, right? And so that's one of the biggest things that we've, you know, faced, is how do we reduce work flow for physicians, right? And so, I mean, that's---- Chairwoman Comstock. All right. Thank you very much, and I'm over my time, but I really appreciate it. I'm---- Mr. Reed. If I could borrow some time from Mr. Lipinski really quickly, I think it's interesting that Dr. Shaw, Mr. Look, and Dr. Krauss all talked about access to data. But one of the problems that we do see is that much of the guidance around remote patient access to data on HIPAA pre-dates the iPhone. Chairwoman Comstock. Yeah. Mr. Reed. Now, they've done some new stuff, but 2006, for the guidance, iPhone came out in 2007. So as you're considering the places where there's movement, there is room there. Chairwoman Comstock. Thank you very much. Recognize Mr. Lipinski for five minutes. Mr. Lipinski. Thank you. I want to follow up on what Mr. Epstein had just mentioned about the--how the Office of the National Coordinator within HHS had recently released the final rule on expanding electronic health information, access, and exchange. Now, the rule requires that mobile health app vendors develop apps with an open application programming interface that allows the user to share data from her mobile health app with her electronic health record. So, Mr. Epstein, is there anything else that you wanted to add on that? Is there anything more that needs to be done on interoperability? I wanted to see if anyone else had any comments on that. Mr. Epstein. Yeah, absolutely. So, on the app side, I think I can speak for all of us, but maybe not. We all use APIs, right? That's the standard, right? But when you talk to the EMR vendors, when you're talking about, like, Epic, and, you know, these guys, right, that's really the problem. It's not us, right? We want to get in with those guys, right? We want to integrate with the system, right? And it's really, how can we get in? And so, you know, the current process today, there's both these technical barriers, right, but then there's also--I have to actually go first sell--there's no easy way to do it, right? I have to go through this long contracting period. I usually have to get the doctor or the health system to vouch for me to get into these guys, right? There's no standard process. And then on top of that, in terms of HIPAA regulations and data sharing, as Mr. Reed was, you know, pointing out, the standards are totally unclear for what we're supposed to do. So, for example, we're integrating with AllScripts and Athena, right, large publicly traded EMR vendors, right? For one of them I assigned a subcontractor, BAA, with one of them, which I think is the correct thing to do, and with the other one I literally have to go doctor by doctor to sign a new contract with every single one of them, which makes no sense at all, right? But it's unclear what we're supposed to do with how the laws are written, so---- Mr. Reed. I would say that NIST has a role to play. We all believe that better user interface design is absolutely critical. They have some oversight in it. Originally NIST was powered in part to help with the interoperability. I think we all know there were some misaligned incentives for the EHRs, in terms of creating the interoperability that we all need. We're all exploring open APIs, and there are projects underway to improve it, but realistically I believe that the motivation will have to come elsewhere. The major vendors recently signed a pledge about no data blocking. That's a nice start. We want to see that continue to grow, and an acceptance of either open APIs or other systems that allow for better interoperability. Mr. Lipinski. Anyone else? Go ahead. Can you pull the mic a little closer? Mr. Epstein. You know, turn it on. You know, basics. Yeah, sorry. So everyone is talking about interoperability between EMRs and apps, right, but there's also another type of interoperability that's not talked about very often, which is also incredibly important, which is interoperability with insurance companies. And there needs to be standards there. It's a--literally that highway analogy that I told you is how it works today, and it--it's almost--it's so difficult for a company like mine, that's trying to say, look, what is your benefit, where can you go, how can I help you, and the insurance companies don't want to do that. And that--it's the same interoperability problem, actually, for doctors talking to those insurance companies with a--what's called a prior authorization process. You have to literally go--with phone calls, right, with--you have to get the nurses, you know, back and forth--you have to do a peer to peer with physicians, right? This is all just standards. This should be in the API connection. I should be able to ask you, and you should be able to tell me electronically, and we're done. Mr. Lipinski. Thank you. I just--very quickly, before I get to my next question, I want--so here's my blood glucose monitor, and here's my pump PDA. So I'm looking forward to looking at and trying out Tidepool, although it's a lot of information to put in there. And it's a matter of actually getting myself to do that. The issue that is--you talked about---- Mr. Look. We try to make it easy, so---- Mr. Lipinski. Connect---- Mr. Look. --you know---- Mr. Lipinski. But it still takes time. The issue with connecting these two, which you said you have done--the issue, as my endocrinologist has told me for a number of years, is a liability issue. There's no technology issue whatsoever, so-- but that's something beyond where--what we can do here, but I just wanted to mention that. And--before I ask my last question on price transparency. Again, Mr. Epstein, you--it's been, you know, I've been trying to do this for the 12 years I've been in Congress, is get to more price transparency. There's been some work that's been done--requirements that have been done at the federal level. How do you get the prices? The providers don't want to provide the prices. And then you have--the insurance companies have their, you know, the rates that they negotiate. The insurance company has a different rate with the hospital. How'd you get at this? Mr. Epstein. Yeah. So the long answer is talk to me afterward and look at my written testimony, but the short answer is it's really not easy at all. We work directly with providers. We try to get fee schedules. We try to get claims data. Again, there's, you know, gag clauses, and all sorts of, you know, most every nation clauses, all--and these contracts they sign with insurance companies, all of which, I think, should not be allowed. In California, for example, gag clauses are not allowed, so I think at a federal level there's more that we can do there. But basically, you know, the way that you have to do this is you've got to get--first, what's in and out of network, and there's no standards on that right now for insurance companies. There need to be, right? Because, you know, just as an average patient, like, where do I go? Come on, guys, right? And even if you call your insurance company, they can't tell you. So there needs to be standards there. And then when you get to the fee schedule component, you know, there's lots of companies, like Castlight, like my company, that look at claims data that try to process these things, that write statistical models, but it's just not easy. It's really a complex problem. When you look at the--kind of the scope of what Stroll does, you know, for an individual doctor trying to make a decision, there's more than a trillion options, with a T, trillion, when you're trying to figure out where a patient can go that's best for them. So it's really not an easy question. Mr. Lipinski. Thank you. Chairwoman Comstock. Thank you. And I now recognize Ms. Bonamici for five minutes. Ms. Bonamici. Thank you very much, Chair Comstock, and Ranking Member Lipinski, for having this informative hearing. This topic is--in this Committee, we're frequently reminded of the challenges of regulating and legislating around technology, because the technology advances so much faster than the policy. And the example about HIPAA, you know, it was back when we had landlines and pagers. You know, it's really time to update a lot of these things. And there's some great examples from my home state of Oregon. Dr. Krauss, I saw you spent some time at Oregon Health Sciences University. I, last fall, met with some entrepreneurs from OHSU. They developed Provata Health. They got a grant from NIH, and it's a wellness digital health program. And they're using it with Oregon's public employees, educators, and families, and seeing tremendous progress and improvements in nutrition and physical activity just through the digital health program. For example, the Portland Fire Bureau said they're saving about $1,000 per firefighter just because of using this. So there's a tremendous amount of potential. The director of the OHSU Knight Cancer Centers Institute on Melanoma Research, and a cancer biologist there, Dr. Sancy Leachman, and the biologist, Dan Webster, created an app to help users track moles for science in melanoma. So there's just a tremendous amount of potential. And as we look at ways that we can help patients receive better care, and improve diagnoses, it's really important for us to look at the potential here, and evaluate these tools. I really appreciate your innovation and, you know, Mr. Look, and, you know, your personal stories about--Dr. Shaw, how you stepped up and filled this need. I serve also on the Education Committee, and I have founded and co-chair the STEAM Caucus to talk about the importance of integrating arts and design into STEM so that we have an innovative work force, and creativity, and innovation. So this is yet another example of where design is important. I know that--I think the NSF, their Smart and Connected Health Program goal, is to help transform the health care system to one that's more reactive. One of the largest, as you know, health information technology conferences is happening this week, and focusing on some of the behavioral aspects of these apps. So can you talk a little bit about the design, and how important it is that these apps be useable, and how has design played in your design--how has design played a role in your development of apps? Who wants to start? Mr. Reed? Mr. Epstein? Mr. Reed. So, very quickly, I use an example of AirStrip. It is a vendor that actually puts live wait forms in the hands of physicians on a screen. Like, this--it is amazing in its ability for a physician to actually quickly go through, look at live wait forms, spin out, pick something in particular, look at the event, move it on, transfer it to another doctor, all on their iPad, while the patient is still in the ambulance. And so the design of that is critical. Notice what I didn't say. I didn't say pull down menu. I didn't say a login screen, followed by a pull down menu, followed by a sidebar, followed by a pullover. It's got to be touch sensitive---- Ms. Bonamici. Right. Mr. Reed. --obvious in its usefulness, and responsive in its design. Ms. Bonamici. And, Mr. Epstein, I know you say something in your testimony about removing the complexity and decision fatigue, I think is what you said, and confusion facing the average patient in the U.S. health system. So can you expand on that, and how your app has changed a person's management of their health care? Mr. Epstein. Certainly. So if you look at--I was just talking to Providence Health Care. I was at that large conference in Las Vegas yesterday, right? And so if you look at the average number of clicks that would go through to ordering a radiology procedure, it used to be 20. 20 clicks, right? So now it's four, with Scroll. And so when you think about, you know, just, you know, what you have to do, it needs to be easier. And when you think about, like, login screens and things like that, that's actually required by HIPAA. So, you know, we should think--and do you know what--the first thing that--when I go talk to hospitals, you know what they ask me? They say, can you make it an auto login? Ms. Bonamici. And? Yes, Mr. Look? Mr. Look. So a lesson I learned working at TiVo, an easy to use consumer electronics device, is if you don't make it simple, and approachable, and intuitive, it will fail. A lesson that Silicon Valley has taught us is you have to iterate. You have to try something, test it, try it again, test it, try it again, test it. We've tried to apply both of those to everything we do at Tidepool. Design is at the core of everything we do. Our UI design lead, Sarah Krugman, has been living with Type1 diabetes since she was six years old, so she has empathy for the people that she's designing for, and then she gets to iterate, and try and try again. One of the challenges is the regulatory structure tends to be design up front, test, release, not iterate, try, iterate, try. So I do think we can do more. Ms. Bonamici. Right. And, real quickly, I mean, we also talk on this Committee a lot about cybersecurity, and data breaches, so are you all convinced that we can do this, and protect people's privacy, but still make everything more efficient, more usable? Because, you know, it's not like we're logging in to buy a plane ticket or something. You know, this-- health issues are sometimes really urgent, and we need these things to be easy to use. Are you all convinced that we can do this and protect privacy? Mr. Reed. Yes. Mr. Look. Yes. Mr. Reed. Yes. Mr. Look. 100 percent. Dr. Shaw. Yes. Mr. Reed. But I would point out that yesterday we had a hearing in the House Judiciary Committee where we had FBI Director Comey and Cyrus Vance basically take a swing at the idea of the kind of security that we're all talking about. And we are all confronted with the reality that, on one hand, you have Comey saying, well, I don't know about this encryption stuff, at a certain level. And yet NIST is telling us in order to protect the patient privacy and health that we must engage with high level cybersecurity elements, like encryption. So we asked Congress to make sure they're giving us the right message, and make sure the solution makes some sense. Ms. Bonamici. Well, I look forward to working with my colleagues in breaking down some of those barriers. I yield back. Thank you, Madam Chair. Chairwoman Comstock. Thank you. And I now recognize Ms. Esty for five minutes. Ms. Esty. Thank you, Chairwoman Comstock, Ranking Member Lipinski, for this really important hearing today. To Mr. Look, with a brother who has Type1 diabetes who's also a triathlete, this would improve his life. I'm going to make sure he gets on board. As a mother who took many, many pictures, Dr. Shaw, I think empowering consumers, parents, to really use technology to look for things--as the one who checks my husband's moles--I mean, we are starting to take pictures. And we talk about this. Like, I should be taking pictures, because you're only going to get in, you know, it takes you 2 months to get in and see the doctor. So, for all of you, it is critical that we do this, not just to save money, but to save lives, and to empower Americans to lead healthier lives. It can't be about going to see your doctor and fixing the problem after the fact. How do we keep ourselves healthier for longer? And I think we're all committed to that, because that's the goal, not more health care. It is healthier lives. So I want to thank you all for your work. In Connecticut we're doing a lot of work around stem cell research, personalized medicine, all of these things that are going to be so important. And when I think about the privacy issues, we're using our fingerprint to open our phone. That kind of is a personal identifier that ought to be able to unlock these things pretty quickly. So it seems to me we should be able to solve that problem, I hope, in ways that meet the tests that we are being challenged with otherwise. Dr. Epstein, you had--in your testimony you talked about-- Mr. Epstein. I know, I--as somebody who grew up in Minnesota, I figure, Carlton, I'm just going to elevate you to doctor. You're--it's the spillover effect of all the doctors around you. You talked about how when you applied--when Stroll applied for--to receive federal funding through SBIR you were turned down, and you went elsewhere. You went to the private sector. Now, these programs are up for reauthorization. Can you talk to us a little bit about--what should we be looking for? What should we, as Members of Congress, be doing about critical roles in federal funding, which we fight for every single day in this committee on basic research, and yet you are raising some really interesting and troubling questions about whether we're going after it the right way. Mr. Epstein. Great. Thank you. Yeah, so I'm all for those programs, and I think, you know, there's two questions. One, is there, you know, enough money for those programs? And then the second is, you know, is the money going to the right places, right? You know, I think probably the answer is no to both of them, right? But, you know, I won't talk about the absolute management of the money. But in terms of--especially, you know, for app developers, right, I think it's great that we have, you know, a number of doctors, you know, that are here that have, you know, tens of years of experience. But there's also, you know, people with, like, you know, a couple years out of college that really have great ideas that don't, you know, need to make very much money, right, that really just want to make a difference. And when you look at, you know, what $150,000 can do for this country, like, you know, let's say, you know Stroll is not successful, right? Let's say there were 100 Strolls, right? That's, what, $15 million, right? We're talking about $500 billion that, you know, how many bets do you want to make? And I think it's worth taking those bets, so, you know, and I think it's really, you know, how those programs are administered, and who is reading those applications, right, and who has the experience to say, like, is it--do we believe this person can do it, and is it a worthwhile endeavor? Ms. Esty. Thank you, and I may follow up more on that, because I think that's exactly where there is a role for federal government. We have a market failure, because if you're trying to save money, it's not clear who's going to collect that money, and the apps are designed for free, and you're not going to charge people to use them. So we do have a real compensation issue, and incentive misalignment. So I think--the other issue I wanted to ask all of you about was this question about iteration. And we run into that all the time in this Committee. You know, the legislative process is designed to be slow, and yet technology is moving very, very fast. And so we have, you know, we're dealing with agencies who are struggling who have 15-year-old systems, to say nothing of trying to deal with apps. Any of you want to talk to us a little bit about how, as responsible policymakers, how do we think about, you know, what can we responsibly look to do to vet ideas and technologies, and yet not be so far behind the curve by the time we approve them? So it looks--Dr. Krauss is getting ready to go. Please. Dr. Krauss. Well, yeah. The reason is is--one thing that's very important to us is that there's a real marketplace of these apps. And we do want very safe and effective apps to come out. And I don't know that there's enough focus on that in many of these areas, particularly with significant medical apps. And so we are very sort of engaged with this idea of using a research approach, using mobile devices to collect data, build prototype systems, test them, and only then release it, and we hope that that's encouraged. And I think this sort of Research Kit approach is helpful in that regard. I think it would be very helpful if there were administrative add-ons to NIH grants for rare diseases to fund apps in those areas. That'd be very helpful. And general encouragement of app development with FTA, which, you know, they've been helpful, but everything's in a preliminary stage. Thank you. Mr. Reed. I'll quickly explain what he--one of the things that he mentioned there at the end, which is a solution, or at least a--something that the FDA is trying, and that is the development of this risk triangle, where they came out with the guidance in 2013, and declared that apps that posed essentially no risk to patients, or something that would not require a 510(k), a review--regulatory review process, that applications that moved into the middle category, which they refer to as a regulatory discretion area, were ones that they felt had low likelihood of patient harm, but yet probably still fell under the purview of the FDA. And then, finally, the obvious ones, which is if you have an app that, either through marketing, or through the technology that you're trying to do, creates a real risk to patients, then yes, this needs to go through a formal process. So far several applications have gone through the FDA, and have passed 510(k). At last count--I don't believe anything has been pre-market approval. I don't recall a single app that's done full pre-market approval. Everything has been 510(k). If I'm wrong on that, I'll correct it in my written. Thank you. Ms. Esty. Thank you. Appreciate all of that. And did you have a comment? Mr. Look. I was going to suggest, I do think we need to find a way to disconnect the riskier components of technology, where you would want to actually do a deeper testing release cycle from the parts of applications where you should be able to iterate quickly. Like, even--something that visualizes blood glucose data, I should be able to release software multiple times per day to help find the best way to present that to my user. So it's a matter of where the risk is. Ms. Esty. Thank you very much, and I think we'll follow up to get a little more precision so we can pass that through to FDA, and we can look at it in our own legislation to try to provide some of that--your help, and that guidance. Thank you very much. Chairwoman Comstock. Thank you. And I now recognize Ms. Clark for five minutes. Ms. Clark. Thank you so much, Chairwoman Comstock, and Ranking Member Lipinski. And, really, what an incredible panel. Thank you for being here. Thank you for the work that you're doing, and trying to help us help you. Last night I had a great privilege. I have three Weston, Massachusetts High School juniors who won the STEM app contest, and they--Dr. Krauss, you'd be interested--developed neurological testing that could be done on an app and give real time information, be able to be done remotely, and also measure things that couldn't be measured on a paper test. So the speed, how many times, where did things sort of fall apart for patients. Really interesting stuff. And I was thinking about them, and, coming from Massachusetts, where we really have a hub of innovation, one of the things that I am hearing from companies in my district is that, as they are worried about technology and app development sort of falling into the regulatory no man's land, they're seeing the lack of clarity really causing the VC community and investors to pull back. They don't trust the regulatory atmosphere, so they don't know how to play in that field. And I wondered, to any of you, what were some of the questions that investors asked when your companies were getting started, and what were some of the biggest pushbacks? And what are you sort of hearing from the landscape around investors? Mr. Epstein. So--I'm going through this process right now, so I, you know, I've had 80 conversations in the last 2 months, so I feel like I can speak pretty--so we're not FDA regulated, so that's not something what we're worried about. And, in fact, on the regulatory side, that's--the biggest sort of fear, like, just--like non-rational fear that investors, you know, talk to me about is really just about what is the future of this market, in the sense that, you know, are apps going to win, right, or are these big, you know, EMR vendors, right, basically going to, you know, rule the ship? Like, is there a role for a company like Stroll, that makes this very, very important, but very, very small, in terms of the big, you know, scheme of health care, right how do we fit into this, right? And basically, if it's not going to be the case that we can integrate, and it's not going to be the case that we can, you know, distribute through these channels, right, then we're not going to win, right? Then an investor doesn't want to invest. It doesn't matter how great the idea is, right, and then they walk away. Ms. Clark. Yeah. Dr. Krauss. We have more of an academic model, where we've, like, aligned ourselves with Cure Epilepsy, that was founded by Susan Axelrod. And so we're applying for grants, we're collaborating with them and their scientists, in terms of patient experience, and what we want to include in the app, and then we will develop a non-profit kind of model for release of this app. Ms. Clark. Yeah. So it just doesn't come into your world, the private investor. Dr. Krauss. Well, it will eventually, probably---- Ms. Clark. Yeah. Dr. Krauss. --but we basically want to get it right, and use Research Kit, do research, really optimize the system before then--we turn to commercialization. Mr. Look. So my company made a crazy decision to be non- profit, even though we're in the middle of Silicon Valley, in part because of this, in part because we wanted to focus on the unique needs of Type1 diabetes, and not have to be pulled into the--a broader market that had to show a return. But one of my board members is one of the leading health care VCs in Silicon Valley. We spend a lot of time with the device makers that are trying to raise funds from VCs, and this is a real issue. Why would a VC give money to a medical device company that's going to have an 18 to 24 month PMA approval cycle, when they can give that same money to the next software only social network, and get them out the door quickly. So it is a real problem, and I do think it hinders innovation in this area. Ms. Clark. Great. Dr. Shaw. In the case of retinoblastoma, you know, my vision is to get this app into--I can dream big. There's nothing with dreaming big. But my vision is to get this app into every parent's phone. There's 4 million babies born a year in the U.S. I--you know, and every year it's a new set of parents. And I can't reach them, right? Ms. Clark. Right. Dr. Shaw. But there's only 30,000 pediatricians. I can reach them, and they don't have low--they don't have high turnover, right? So I actually want to be regulated. I want a pediatrician to feel comfortable with our app. And I think if I get some sort of regulatory approval, and we, you know, we put it through all the tests, that that will happen. It's so cheap--what we're doing is so inexpensive. I mean, I just don't know if we would--this is probably bad to say, but I don't know if we would need any more money, other than what an NIH R-1 could give us. Ms. Clark. We won't hold you to that. Dr. Shaw. And I, you know, it's all free, open source, no ads, or anything like that. So--I haven't got to the business side yet. I should get all your cards. Mr. Reed. Well, I think, to try to given you some perspective, we have a connected health initiative, which engages with hundreds of these companies, and three things come to light. If you have to spend time in your pitch meeting explaining why the VC doesn't understand HIPAA correctly, it's a problem. Ms. Clark. Yeah. Mr. Reed. HIPAA becomes one. And oftentimes HIPAA isn't the problem. It's the education around HIPAA. The number of HIPAA consultants that, frankly, have it wrong is remarkable. So HIPAA is the first. The second is the FDA questions, which--I think it's important to give some credit where credit is due. The FDA, from 2013 on, has really tried to step up their game. Now, they haven't--there are still auditors in the field that seem to have not gotten the message from on top, but that's a problem. And the third, and the most important, is reimbursement. The realize of anything where you're selling to a physician or a health care system is if they don't see the monetary tie back to it, then you don't get the purchase. I see lots of companies that get angel investing, Series A financing, and then never get mezzanine. Because that's the moment where you have to walk in to your funders and say, here's my sales projection. Ms. Clark. Yeah. Mr. Reed. And the regulatory barriers, with no reimbursement model, with liability increased for physicians, how do you make that--how do you close that purchase when the other end of it isn't sure, as we've pointed from Research Kit, is it going to be effective? Is it going to reduce cost? Is it going to actually increase liability? So there are multiple regulatory threads that form through this, and ultimately it creates a barrier, really at that mezzanine financing level that we see. Ms. Clark. Great. Thank you. I'm well over my time. Thank you. Chairwoman Comstock. All right. Thank you. And I now recognize Mr. Swalwell for five minutes. Mr. Swalwell. Thank you, Madam Chair. Thank you to our panelists, and, Mr. Look and Mr. Epstein, I'm familiar with your landscape. I represent the East Bay out in California, where so many of these apps have been created, are being developed, and being used by my constituents, and other folks in the Bay Area. We are many of the early adopters. With these apps--one question I have, you know, speaking about just HIPAA, and privacy, is--it's an exciting time. You know, people are experimenting with different ways to tackle many of the health conditions that plague us, or allow us to live more healthy lives with better preventative measures. But, you know, in--it's--as we know, in the Valley, and the Bay Area, companies take off, companies crash. That's just kind of the culture of our environment. But when an app company at least gets off the ground and starts to get some users, and then, say, it crashes, what happens right now with the data of the people who have, you know, hoped and trusted that that company's going to be around, and that they're going to have a relationship with the company? But now, you know for whatever reason, it just didn't survive. Do we have laws around what happens with the data? And what is your experience in the community of what happens with the data? Is it destroyed, or is it still kind of out there on a server that is dormant? Open to anyone who wants to take---- Mr. Look. I can answer from the perspective of Tidepool. I think this is why it's so important for end users, patients, to own their own data, and for the companies that house that data to be stewards of that data. And, finally, for those companies to say, here's how you get access to your data at any time. Whether it's by downloading it in a simple text format, or-- JSON is the, you know, wonderful modern way of storing data, or providing APIs so that you can say, at any time, you may get your data from our system to someone else's system. Companies do go away. We need to expect that that will happen, but it also needs to be possible for the end user to always have access to their own data so they can take it wherever they want. Mr. Swalwell. Sure. And, Mr. Epstein, if you could address that, and also just tell me, in your statement, that private funding alone is not enough to drive innovation in mobile health technology. What could the federal government specifically do to help enable investment in mobile health technology? Mr. Epstein. Great, thank you. I'm actually glad you asked that one, to address something that Ms. Clark said. But--so there's a class of apps that you can develop for $20,000, which are very important, right? Then there's a class of apps where you have to hire data scientists, right, you have to work with huge sets of data. It takes years of development, right, and you cannot do that with just, you know, my team, you know, working on their own. You need to have funding, right, and investors don't want to invest in that, because they look at other apps that are, you know, texting or whatever, and say, look, I can deploy that in two months and see growth. And I'm saying it took us two years to develop Stroll. It took us two years, no product. two years, right? That's not something that most investors want to invest in, especially when I don't know how I'm going to make money, and I don't know if it'll work. And then--but--and then briefly, for the death of apps, just--again, this is where I may now be misinterpreting HIPAA, but there's--you're supposed to keep data for seven years. You--the--who you sign a HIPAA contract with, they can destroy that--you--they can request that you return and destroy that data. I have no idea what happens when a company dies. Mr. Reed. He--Mr. Epstein is right. There are provisions of HIPAA, and the Office of Civil Rights, OCR, at HHS deals with these questions every day. It is an ongoing thing. It's funny, Congressman Swalwell, we were just doing our sharing economy event together, and these same questions of what happens to data is something that rides throughout our new modern sharing economy. I think in the health care space--you've heard from all of us that--the idea that the patient owns their health data is a thematic element that I think we would all agree to. It's different than where you traveled in your Uber or your Lyft. It has a certain level of--personal nature to it that I think is critical. Mr. Swalwell. Thank you. Yield back. Chairwoman Comstock. Thank you. And I now recognize Mr. Palmer for five minutes. Mr. Palmer. Thank you, Madam Chairman. Mr. Reed, according to a report from the Health Research Institute published in December, 32 percent of consumers reported having at least one health app on their mobile device, which is double from just a couple years ago. Given the increasing prevalence of health apps, what are developers doing to ensure that consumers don't begin to see apps as replacement for their physician? And I find this particularly interesting the context of, typical male that I am, I tend to self-diagnose. Mr. Reed. First of all, you're right. As a fellow male, I can tell you that we are a terrible species when it comes to my wife, when you go to the doctor, it says who's your primary care physician? Most men before 40, and even after 40 in many cases, what a primary care physician? Mr. Palmer. Yeah. Mr. Reed. I go to the doctor when I'm hurt, and that's the primary care that I get, from that perspective. I worry less about people using apps to self-diagnose. I'm more concerned with them finding applications that actually engage them in a way that they don't do what we, as typical males do, and then ignore it. You know, one of the Members of Congress who was here earlier spoke about checking her husband's moles. That's an interesting concept, but there it is, right? We look to others to engage with us in a way that gets us involved. And the reality is that my dad loves to watch World War II shows on the History Channel. If there was some way that an app engaged with him in the same way that the History Channel does on World War II, he might be better about monitoring his Type1I diabetes. So I think that we're looking at the ways to make these more engaging, and from a user design perspective. But I think replacing the physician isn't the problem. How do we get the person to the physician in a timely fashion so that they're not as sick? Mr. Palmer. Anyone else want to say thing? I've got a comment on this, and I think where technology might lead us on this, is that--you do these EKGs, is there any possibility at some point that, instead of plugging in earphones, you plug in something that you've tapped on--you're on the stationary bike or whatever, and--and in the context of self-diagnosis, actually--again, from a male perspective, well, that's just heartburn, actually go see a doctor when you need to? Mr. Epstein? Mr. Epstein. I'm not sure if I have anything intelligent to say on that. Dr. Krauss. I have a comment. One function we're putting in our app is screening for risks for sudden death with epilepsy. And so you will get a red light, green light, yellow light kind of meter, based on your risk, based on assessment of your tracking of your seizures, and your pill-taking, and the type of seizures. And so that sort of feedback will go to the patient, and then it will guide them to go see their doctor. Mr. Palmer. I should've---- Dr. Krauss. But we don't give that data to the doctor. Mr. Palmer. I should've give you a little more background on this, because I just visited a cardiovascular group a couple of weeks ago, and people who have pacemakers, they have the ability, on their phone, to have their heart monitored by their phone, that if they have an irregularity, not only does it inform the patient, but it communicates with the doctor's office. So the technology is moving in a direction where, you know, to a--in a positive way. You could self-diagnose to get an alert that you need to seek care. Also, it may also give us an opportunity to avoid over- diagnosis. Do you see any opportunity there? Mr. Reed. You know, you're jumping to my favorite topic, which is the world of wearables. We actually did a study of 99 days of--we looked at 25 different wearables. And you're completely right. The reality is, starting with sports med, you see companies like Under Armor already beginning to look at it. But how do I turn the shirt that you wear into something that helps you keep track of your health? I think I see at least two Apple Watches here at the table. And if you look at the back of this watch, it's exactly what you said. Mr. Palmer. Um-hum. Mr. Reed. It's a platform for sensors. The back of it is a whole row of sensors. And what you're discussing, sir, is exactly where I think all of us will end up being, and that is how do we incorporate wearables into giving better diagnosis? We're still on the road to that. There are regulatory barriers. But that is, I think, a big part of our vision. Mr. Palmer. Thank you, Madam Chairman. I yield back. Chairwoman Comstock. All right. Thank you, and I just want to thank all of our witnesses for a great hearing. It's so exciting, about the possibilities here, and what you all have created and are doing, and how we need to make sure we're getting out of your way, in some cases, and in other cases figuring out how we can clear some of those roads for you. So I would invite the witnesses to continue to keep in touch with us, give us any thoughts or ideas that you might have for additional areas we can focus on. So the record will remain open for two weeks for additional written comments or questions from any of the Members. And so, again, thank you so much. And since there are--well, there's only two of us left here, but since there are 435 of us, Dr. Shaw, I did want to say my dream is to get this in every parent's phone. As the grandmother now of three children, I can tell you, three parents, I'm going to get it into their phones, but share it with my constituents. I think this is the kind of thing we can all start sharing. We can do this organically, virally, however we can do it, and help you share this mission. And God bless, it's wonderful work. Dr. Shaw. Thank you. Chairwoman Comstock. And this hearing is adjourned. [Whereupon, at 11:34 a.m., the Subcommittee was adjourned.] Appendix I ---------- Answers to Post-Hearing Questions Responses by Mr. Morgan Reed, questions submitted by Chairwoman Comstock [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Responses by Dr. Bryan F. Shaw [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Responses by Mr. Howard Look Responses by Dr. Gregory Krauss [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Responses by Mr. Jordan Epstein [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Appendix II ---------- Additional Material for the Record Statement by Committee Ranking Member Eddie Bernice Johsnon [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] [all]