IDR Team Summary 6

Determine how the effects of the digital age will improve health and wellness.

CHALLENGE SUMMARY

As noted in IDR Challenge 1, healthcare systems offer a major test ground for the implementation of methods for efficient lifelong learning that could benefit society through improved health and wellness. The challenge is the cost of doing so effectively and the willingness of care providers and care consumers to adapt their practice and lifestyles to innovative but demanding new technologies. Two potential areas of opportunity are 1) improved career-long education of care providers that would expand the primary care giver roles beyond physicians; and 2) improvements in physician-patient communication for enhancing prospective health strategies. The team challenge is to examine current strategic efforts aimed at these or other comparable health and wellness endpoints and devise practicable means to exploit the digital information explosion in these proposed solutions.

Improved Career-Long Education

In current medical education, the medical student must learn not only the relevant facts and their application to disease mechanisms, treatment, diagnosis and prevention, but assimilate into that body of working knowledge all the new facts that will emerge during their careers as practicing physicians. Most such practice emphasis is devoted to solving acute problems in ill health, injuries, infections, acute cardiovascular or cerebral pathology, or persistent functional problems such as diabetes mellitus, obesity, and epilepsy. This crisis-directed practice may also confront



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IDR Team Summary 6 Determine how the effects of the digital age will improve health and wellness. CHALLENGE SUMMARY As noted in IDR Challenge 1, healthcare systems offer a major test ground for the implementation of methods for efficient lifelong learning that could benefit society through improved health and wellness. The challenge is the cost of doing so effectively and the willingness of care providers and care consumers to adapt their practice and lifestyles to innovative but demanding new technologies. Two potential areas of opportunity are 1) improved career- long education of care providers that would expand the primary care giver roles beyond physicians; and 2) improvements in physician-patient commu- nication for enhancing prospective health strategies. The team challenge is to examine current strategic efforts aimed at these or other comparable health and wellness endpoints and devise practicable means to exploit the digital information explosion in these proposed solutions. Improved Career-Long Education In current medical education, the medical student must learn not only the relevant facts and their application to disease mechanisms, treat- ment, diagnosis and prevention, but assimilate into that body of working knowledge all the new facts that will emerge during their careers as prac- ticing physicians. Most such practice emphasis is devoted to solving acute problems in ill health, injuries, infections, acute cardiovascular or cerebral p ­ athology, or persistent functional problems such as diabetes mellitus, ­ o ­ besity, and epilepsy. This crisis-directed practice may also confront 69

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70 THE INFORMED BRAIN IN A DIGITAL WORLD ­tomorrow’s ­clinicians, but given the growth in biomedical understanding of disease mechanisms and the social, genetic, and environmental factors that can tip the odds from vulnerability to resistance to these disease conditions, how can digital information help? Snyderman and Williams have suggested a strategy that would expand the care team from physicians only to include para­ rofessionals (physician assistants, geneticists, epidemiologists, and p information specialists) who will be needed to assimilate into practice ever more rapid medical discoveries. How will the digital information explosion be refined into the knowledge needed to enhance the likelihood of success for this strategy? Given the reductions in hours allowed by the Accreditation Council for Graduate Medical Education, the training career opportunities for post-graduate medical education has become seriously constrained by limits in maximum hour work weeks, reducing the time to develop experi- ential competencies in the skills needed for effective practice, a problem that will be even more critical if the ultimate national healthcare plan reduces the Medicare contributions that presently fund for post-graduate clinical training. The rapidly broadening armamentarium of powerful new medications requiring lifelong dosing and their complex interactions with individual patients creates multiple potential adverse drug interactions, specific to individual patient diagnoses. While the IBM-Watson project and other expensive, proprietary differential diagnostic systems, are beginning to enter some forms of managed health care, can such computer-assisted diagnostic judgments become an acceptable form of medical practice? Therefore, the underlying problem remains of devising a medical educational system that will not only motivate students to become skilled in basic academics and in the technology of medicine, and remain able to assimilate new knowledge, new medications and new forms of medical practice. Improved Physician-Patient Communication If a goal of modern medicine is to improve the general state of soci- etal health, the strategy suggested by Snyderman and Williams calls for enhancing prospective health strategies, by which any individual would maximize their opportunities for lifelong wellness by a team of health practitioners who can implement strategies for disease avoidance based on new knowledge in the genetic, environmental, and social factors that can determine disease onset, progression, or resistance. Levinson and Pizzo have called attention to some of the ways in which current and future patient-

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IDR TEAM SUMMARY 6 71 physician communication could be improved. Much of such enhancing communication has traditionally been face-to-face in office or bedside, but the onrush of digital information technological options could fragment this budding communication option. If the financial inducements (from the pool of Medicare finances) being offered to hospitals, group practices, and individual practitioners require the demonstration of meaningful use of electronic health records, how can digital technologies avoid becoming a barrier between the doctor who is entering patient details of complaints, findings, and treatment history—while still finding the time to listen to the patient’s concerns? How effectively can the Office of the National Coor- dinator for Health Information enforce that such electronic health records will be interoperable across medical practice systems while ensuring confi- dentiality of individual personal details and vulnerabilities, and at the same time serve as a national epidemiological surveillance for the emergence of communicable diseases or adverse drug effects? Improved Health Management by Physicians and Patients Another major shift in the practice of medicine is the development of digital communication systems to administer medical treatment at a distance, educate patients, and monitor disease states, often termed “tele­ medicine.” An extreme example is the tele-intensive care unit (tele-ICU; Goran 2012). The critical “life-or-death” importance for correct testing, diagnosis, treatment, moment-to-moment monitoring, and constantly reacting to changing health issues places tremendous demands on the multi-modal digital communication system and the human team. How can information, knowledge, and expertise from a high-end hospital improve outcomes for linked ICUs lacking such expertise? In less tense applications, medical management of a disease from a distance is becoming more and more frequent and health-consumer directed. This is due to the availability of accurate patient-worn sensors for blood pressure, heart rhythms, and blood metabolites—not only in daily monitoring but in educating sub- jects to monitor their blood sugar levels, calculate carbohydrate content of foods they eat, and understand the effects of exercise on insulin utilization, and prevent (or reverse, if needed) hypoglycemic episodes, etc. As in the tele-ICU, it is the integrations of the technical digital components with the human-interaction components that pose the real challenge for the effective­ ess and efficiency of system development, especially optimizing n the human aspects. How can all the various aspects be integrated to a seam-

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72 THE INFORMED BRAIN IN A DIGITAL WORLD less operation? How can we quickly identify areas of friction (machine/ human) and quickly fix them? What would be the properties of an ideal tele-medical application? Key Questions • How will increasing technology shape health and medical decision making? • How will the digital information explosion be refined into medical training? • Will computer-assisted diagnostic judgments become an acceptable form of medical practice? • How does medical education motivate students to use digital infor- mation to be life-learners of innovations in medicine? • How can digital technologies avoid becoming a barrier between the doctor and patient? • How can electronic health records be used to maximize patient outcomes? • Can information, knowledge, and expertise provided through digi- tal communication systems improve outcomes for those in the field or for those who lack such expertise? • What would be the properties of an ideal tele-medical application? Reading Brailar DJ. Guiding the health information technology agenda. Health Affairs 2010;29:586-595. Goran SF. Making the move: From bedside to camera-side. Critical Care Nurse 2012;32:20-29. Halamka JD. Making the most of federal health information technology regulations. Health Affairs 2010;29:596-600. Levinson W and Pizzo PA. Patient-physician communication. It’s about time. JAMA 2011;305:1802-1803. Moffett TE, Arseneault L, Belsky D, Dickson N, Hancox RJ, Harrington H, Houts R, Poulton R, Roberts BW, Ross S, Sears MR, Thomson WM, Caspi A. 2011. A gradient of childhood self-control predicts health, wealth, and public safety. Proc Natl Acad Sci U S A 15 February 2011;108(7):2693-8. National Council for Patient Information and Education website. Snyderman R and Williams RS. Prospective medicine: The next health care transformation. Acad Med 2003;78:1079-1084.

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IDR TEAM SUMMARY 6A 73 Because of the popularity of this topic, three groups explored this subject. Please be sure to review each write-up, which immediately follow this one. IDR TEAM MEMBERS—GROUP A • Robert J. Davenport, Brown University • Margaret Y. Mahan, University of Minnesota • Todd J. McCallum, Case Western Reserve University • Paromita Pain, University of Southern California • Parthasarathy Ranganathan, Hewlett Packard • Sam R. Sharar, University of Washington • Tian Zhang, Duke University Hospital IDR TEAM SUMMARY—GROUP 6A Paromita Pain, NAKFI Science Writing Scholar University of Southern California, Los Angeles IDR Team 6A was asked to determine how new tools and metrics of the digital age will improve health and wellness. It was a very diverse team consisting of a technologist who works with acquisition and interpretation of “big data,” two medical doctors and other experts in gerontology, hema- tology, brain science, and computational biology. The approach from the start was to focus attention on the person at the center of medical care— the patient—in a way that would make the patient feel less intimidated by the medical process and help forge a stronger relation between the patient and primary care giver (we use the term “doctor” in the following sum- mary for simplicity, understanding that many types of healthcare providers inter­ ct with patients). The aim was to use digital technology to ultimately a ensure a healthier quality of life. Technology has huge potential to empower patients to be in charge of their health. Today there are digital applications that are immediately avail- able on smartphones and tablets to measure, monitor, consult, and track different conditions. From diagnosis to medication, data collection, compu- tation, and data management have raised the possibility of more precise and customized healthcare. The recently launched Diabeto is an example. This is a Bluetooth device that facilitates the transfer of glucose readings from a

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74 THE INFORMED BRAIN IN A DIGITAL WORLD regular gluco-meter into a specially developed Android app. The readings can then be analyzed easily with the help of the application. But while digital technology is infiltrating medicine in newer ways at both the consumer and provider levels, some developments such as elec- tronic medical records have pros and cons. Physicians who use electronic records during patient encounters often enter data (type) while the patient is discussing symptoms. This can be distracting and make the patient feel neglected, and even prevent him or her from discussing the full extent of their symptoms. As one participant said, “This physical examination is the most important component of diagnosis. It’s not just about checking for symptoms. It’s also about establishing a relationship of trust.” Research has shown that “The doctor–patient relationship has been and remains a key- stone of care: the medium in which data are gathered, diagnoses and plans are made, compliance is accomplished, and healing, patient activation, and support are provided.”1 The team examined these wide ranging aspects of doctor-patient inter- actions and electronic medical record-keeping, but wanted to focus more on how technical innovations could further improve general wellness, rather than facilitate treatment on a case-by-case basis. The team almost unani- mously hit on the idea of strengthening doctor-patient relationships as a key to making care more focused on patients, in an effort to promote personal patient responsibility in the wellness and healthcare processes. Discussion of the critical interpersonal communication process i ­nvolved in the gathering of healthcare information ultimately led to the team deciding that the terms “doctor patient relations” should refer to the patients’ whole experience with the entire healthcare system starting from the time the patient enters the physician’s room to hospitalization, to follow ups after discharge and overall monitoring of his health. The Challenges The team acknowledged the challenge of priortizing those areas that most needed change. As one participant said, “Technology can create more ways of approaching treatment but often it acts as barrier, breaking con- nections instead of creating them, if the doctor seems too focused on his machines instead of the patient.” This is especially true in 1:1 situations 1 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1496871/ (The Doctor–Patient Relation­hip, Challenges, Opportunities, and Strategies, Susan Dorr Goold, MD, MHSA, s MA and Mack Lipkin, Jr., MD).

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IDR TEAM SUMMARY 6A 75 with patients where doctors are very hard pressed for time. Physicians, for example, can be too focused on ensuring that the patient’s symptoms are entered into an electronic medical record system instead of attentively and empathetically listening to what the patient has to say. The problem was defined as how to best design and use technology to fundamentally change the continuum of health care starting from preven- tive care to the diagnosis of disease to maintenance care and the reinforce- ment of health care, by improving the doctor–patient relationship. A technology platform was envisioned that would help: • Enhance the quality of the doctor-patient contact in a positive way • Doctors and other providers change patient behaviors in a positive way for general wellness, disease prevention, or long-term or short-term health care • Set up a system that will help the patient share responsibility for his/ her wellness and health care Exploring solutions: The big opportunity, as the team decided, is to use technical advancements to create a single ‘cradle to grave’ health record system that would improve doctor-patient relations by providing continuous monitoring of healthcare parameters, as well as non-intrusive care to prevent disease manage chronic conditions, and help diagnose/treat unexpected conditions like strokes and heart attacks. Certain key parameters would be used to enhance the platform as well as ensure better health care. These include: • Data: Details about the patient’s previous and present health, as well as lifestyle. The aim is to improve medical diagnosis based on a more comprehensive, and continuously updated personal, daily data. • Better action and follow through: The relationship shouldn’t end with the patient leaving the doctor’s office. Technology must ensure that support is available to patients throughout the cycle of their care in the form of a “personal coach,” tracking progress and encouraging treatment. This could occur via apps on smartphones or tablets where the patient can update data about his/her health, or apps which track and monitor the changes in their conditions. • Information booster: Similar technologies that serve as a ready source of information or reminders for the patient at whatever point of the treatment cycle he or she is in.

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76 THE INFORMED BRAIN IN A DIGITAL WORLD Challenges with a Data Driven System These parameters are also the points where the biggest gaps between science and technology exist. As the team discussed, comprehensive and non-intrusive data collection might seem a simple idea, but how do we know what is most relevant or what may be important in the future. Also, excess data often overwhelm and create ‘noise’. Data collection here must be refined to be automated and with minimum intrusion. But data do not exist in isolation. With the introduction of a data centric platform, legal issues of privacy, regulation, and access also need to be answered. “The biggest challenges would lie,” as one participant said, “in the area of validation of these data and ensuring secure access.” Another key point of discussion was preventing patients (or others) from manipulating or misusing health records. Mobile phones have been used very successfully in countries like India and South Africa to enhance health care. Would the same principles be applicable in the United States or other more developed settings? Concrete Examples of Such Technology The team proposed two concepts where technology can strengthen the doctor-patient relationship. While some of these solutions may already exist for use in other settings (e.g., software that can transcribe text from voice), these concepts apply exclusively to the area of health. They included: • “Invisible Scribe”: Noting a patient’s symptoms as he or she speaks is an important part of the doctor’s assessment. The team envisaged a sort of digital invisible scribe system that would extract key words/phrases as the doctor and patient discussed health and wellness, and automatically organize these data into an intelligible written record of the patient encoun- ter, thereby obviating the need for doctors to manually enter data into an electronic medical record. The system eliminates the need for the doctor having to take attention away from the patient for record-keeping, thereby enhancing the doctor-patient interaction while creating a comprehensive record of the interaction. • “Health Ninja”: This concept is designed to be a complete health care and wellness application compatible with personal digital devices of any kind to create a complete and continuously updated picture of an i v ­ndi­ idual’s health conditions with data collected in a non-intrusive way.

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IDR TEAM SUMMARY 6B 77 Recommendations for Research Needed Cross-disciplinary research effort to look at the social aspects of data ­collection: The team knew that to make technology truly relevant to the issues they raised it would have to involve cross-disciplinary research. They recom- mended an approach that would bring together medical practitioners and digital technology experts, as well the disciplines of psychology and sociology to ensure that technology here would be holistic in its scope and approach. Building a seamless patient-physician relationship: The team was clear that such diverse applications of technology, especially in the medical field, would require the development of new curricula to train a new generation of medical practitioners and healthcare technologists to help them create crucial linkages between technology and medicine. The idea isn’t to create robots or let machines take over from doctors but rather enhance their interactions with patients through non-intrusive data gathering techniques. IDR TEAM MEMBERS—GROUP B • Fahminda N. Chowdhury, National Science Foundation • David M. Hondula, Pavilion Research • Amalia M. Issa, University of the Sciences in Philadelphia • Jin Hyung Lee, Stanford University • Ani Nenkova, University of Pennsylvania • Desney S. Tan, Microsoft Research • Kate Yandell, New York University IDR TEAM SUMMARY—GROUP 6B Kate Yandell, NAKFI Science Writing Scholar New York University IDR Team 6B was tasked with understanding how digital technology can be used to improve health care. The team decided to focus instead on a narrower question: How can we use digital technology to empower patients to better understand and manage their own health? The team made this choice on the theory that doctors are knowledge- able but pressed for time. Patients and their families can be their own best advocates, because they are able to lavish the sustained attention on them- selves that no one ever gets from a short doctor visit.

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78 THE INFORMED BRAIN IN A DIGITAL WORLD Let’s say you have a rare cancer. Your doctor may be a top oncologist. But does she know about your particular form of cancer? Does she keep up with the latest literature? Not always. That was the case for the climate sci- entist Stephen Schneider, who was diagnosed with mantle cell lymphoma. He did his own literature review, assembled his own panel of experts, and convinced his doctors to try a new treatment. His cancer went into remis- sion and he wrote about it in his book, The Patient From Hell. That is an extreme case, but the team thought that perhaps all patients should be somewhat like “the patient from hell.” Everyone should be engaged in his or her own care. But not everyone is a Stephen Schneider. Not everyone is even fully aware of his or her own medical history. How can we make it easier (using digital technologies) for people to keep track of their medical histories and to explore their treatment options? How can we motivate people to engage in their own care? And finally, how can we motivate people to engage in their own preventive care, such as exercising and eating healthily? New Uses for Electronic Medical Records The team agreed early on that patients should have easier access to their own medical data. Currently the healthcare providers who create medical records own them, but they are required by law to give patients copies upon request. The group thought that patients should have easy, electronic access to their tests results and other medical records so they could more easily monitor their own health. Scientists would work with developers to create apps that users would be able to authorize to plug into their medical data. The team had ideas for apps for several purposes: 1. To pull out user-friendly summaries and highlights of individuals’ medical data, including a monthly “health statement.” 2. To aggregate medical journalism or even papers from the Web based on the user’s own medical history. 3. To review users’ drug prescriptions and flag potentially dangerous drug interactions or drug-food interactions. Since users would have varying levels of medical knowledge and ability to understand complex material, the apps would be designed to provide dif- ferent levels of information, depending on the users’ profiles, reading habits, and ratings of the material they read.

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IDR TEAM SUMMARY 6B 79 Data would not just flow from doctors’ visits. The electronic medical record would expand to include health data uploaded by the users them- selves. For instance, users could sync their record to upload data from moni- tors recording heartbeat, blood pressure, exercise, and more. Users could also log food, mood, and sleep. Detailed data about patients’ behaviors (possibly combined with gene sequences) could help flag current problems, predict health risk, and make suggestions for lifestyle changes. How to Help People Take Charge of Their Health and Wellbeing Having proposed how to help people track their health, Team 6B began to wonder how many people would take the time to actually do so. The team classified people into three groups: those who are uninformed, those who are informed but unengaged, and those who are fully in charge of their own health. The team’s new challenge: help people transition from unaware to aware and from aware to actively engaged. The team decided that one of the more effective ways of getting people to engage digitally with their own health would be to focus on capturing children’s interest and attention with an educational game, related to health, diet, and physical activities. Children are often “digital natives,” meaning that they grow up sur- rounded by technology and may be most willing and able to embrace it for learning. They are also clean slates—if we can figure out how to set positive patterns early, they may develop lifelong good habits. The team decided the best way to teach children would be through an interactive game woven into school curriculum. Children in preschool or the early years of elementary school would play a game with a computer program or even a specially designed device that would teach them about nutrition and exercise. They would choose avatars and be responsible for caring for their avatar’s health, making meal plans and making them do physical activities. As the avatar engaged in healthy activities, it would get health points, which would correlate with easy-to-read signs of health. (For instance, an avatar with low health points might look sluggish and unhappy.) The games and health points would be accompanied by fun, interactive presentations on the science of nutrition and exercise. For instance, a child whose avatar had eaten broccoli might learn about the role of calcium in building strong bones.

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80 THE INFORMED BRAIN IN A DIGITAL WORLD The game would be partly theoretical, allowing the children to make any choice they wanted for the animals, but there would also be a real-world component. Children could take on special challenges in which they logged their own eating habits or recorded aerobic activities. The device could even contain a sensor that could register movement, and the child could do exercises to get points. The culmination of the game would be the Avatar Olympics. Avatars would complete in various events, and avatars with many health points would be given advantages in the games. The game could have a social component as well. If done in the class- room, all the students’ avatars could compete in the Olympics, fostering a sense of competition and investment. The game would, in the short run, raise children’s consciousness about health and their bodies. Team members hope that in the long run it would accustom students to keeping track of their own activities and looking criti- cally at their own lifestyle choices. Conclusions The digital age offers unprecedented opportunities to educate people about their own health and health care. In an era when large amounts of medical data and many choices exist, patients can, and should, become a ­ ctive participants in their own medical care decisions. Team 6B’s apps for electronic medical records would help adults a ­ ccess and, more important, interpret information about their own bodies.­ E ­ ngaged, empowered patients would take better care of themselves both within and outside the doctor’s office. One of the great challenges of medicine is to improve preventive care. Digital tools are ideal for improv- ing preventive care, as preventive care happens when patients are outside the medical system. Today, it may be hard to imagine many people beyond extreme health enthusiasts logging their health data and playing with health apps. However, Team 6B thinks that a new generation, at home in the digital world and engaged early in life, has the potential to take responsibility for their health.