Health and healthcare will reach its full potential with new incentives and the democratization of health information.
Initial Draft by Dave Chase and Leonard Kish. Please note key first draft contributors below. We welcome input and feedback, however large or small they might be. We published in Medium due to its capability to allow annotations and comments. Feel free to use them if you have suggestions for improvement. After this round of feedback, we will publish a final version that is version 1.0. Think of this as version 0.8.
Healthcare is going through radical change. It’s been called a “Gutenberg moment” or “Copernican Moment”. Our frame of reference is moving individuals moving toward the center of control, and the change is welcome. Healthcare in its present state is a design failure in light of the money, smarts and compassion that we invest; it rewards the wrong activities. We pay for illness and treatment, and we get more illness and treatment.
New incentives and payment structures for providers, along with better access to information with new consumer technologies, are enabling the shift. Various pay-for-value incentives are driving us to look for ways to optimize health and prevent illness. These incentives will be enabled by the democratization of healthcare, where it benefits all to have access to the same information, much as the printing press enables a common understanding of the world, and a scientific revolution. Now, ubiquitous internet connectivity is creating pervasive intelligence, and with the opportunity to see systems as a whole. This new socio-technical environment will drive a new kind of health science with new opportunities for health innovation that brings together the formerly disparate notions of healthcare, genomics, economics, sociology, and nutrition and more. The health world is flattening while it is becoming more unified.
With these theses, we outline a set of guiding principles to break the cycle and deliver a reinvented health system. The purpose of this is to invite the best thinkers in healthcare’s enlightenment to share their thoughts on what the guiding principles of a redefined health landscape will be, outlining a set of guiding principles to prepare for a health landscape with individuals at the center.
What led to the creation of the Health’s Enlightenment Theses is that we are frequently asked by organizations developing new technologies, health plans, healthcare delivery models, health benefits packages, service offerings and more for a set of guiding principles for how to proceed. This led us to curate this list of theses from the ideas we have heard from the leading thinkers in health and wellness. Many of them are doctors though they cut across the spectrum from all types of clinicians to individual citizens.
A key component of the emerging, more democratic, landscape is a commitment to openness, feedback and learning. To rapidly innovate, we need open source and open innovation to drive our a learning health system. Therefore, these theses are open source. Grab them, add to them, refine them and use them as you’d like. We invite others to take these principles and run with them however they choose. Similarly, we encourage readers to repurpose this content in many more ways and in many more forms, just provide attribution and a link back since that’s the nice thing to do. We’ll be curious to see what you create.
Where we hope to go from here
We are in the process of turning the Theses into a book. We’re super excited about getting some of the most interesting people in healthcare, science, public health and policy being willing to contribute. Individuals such as Esther Dyson, Susannah Fox, Bill Gates, Eric Topol and many others have embraced this project. Each thesis will be expanded upon by the thought leader. We welcome any feedback on who the most compelling individual would be for each thesis. Via Medium you can annotate the specific thesis with your ideas.
Even as we’ve narrowly shared the Theses, we’re gratified with the kind of response we are getting. One of the influential voices in the healthcare social media community, Colin Hung, made the following statement which hits the notes we were hoping to achieve with the Theses.
When I read the 95 Theses, I got the same goosebumps that I did when I read the Cluetrain Manifesto in 2001. Cluetrain was an amazing collection of ideas and thoughts on what the future of business was going to look like given the business and Internet memes of the time. Cluetrain is as relevant today as it was 14 years ago when it was first published. To me, 95 Theses is to healthcare what Cluetrain is to tech businesses.
Theses outlined here are in part corollary to some open source projects. One we’re calling the “Health Rosetta” (healthrosetta.org — not live yet) and another “YouBase” as a part of unpatient.org. As the names would imply, the idea behind the Health Rosetta is build an open, standards-based platform to decode what works and what doesn’t work in this new environment. It will be initially focused on health benefits design. Over time, the intent is to extend into improving the access and efficacy of new healthcare delivery models and define units of value beyond what underpins legacy payment systems (“Relative Value Units”). For example, a concept such as “Patient Value Units” could develop out of this that captures the elements identified in the Quadruple Aim.
In addition, a subset of the theses which relate to access to personal health information has become part of the Health Data Ownership Manifesto at unpatient.org. The goal of unpatient.org is to empower individuals with better access, ownership and control over personal health information through open source and new approaches to digital ownership, control and property.
95 Health Enlightenment Theses
A New Science
1.A new social, psychological, biological, and information-driven medical science is emerging that is harnessing environmental context, data, sensors and networks to better predict, prevent and treat the root causes of disease. It’s precision medicine, but more, because it will predict events before they occur. There have been profound changes in what information is relevant (and useful). No vision of the future of medicine can be complete or even competent if it doesn’t recognize these new sources of information.
2. Open source, open APIs, open data and open knowledge (such as wikis) will become central to defining a common architecture to support this new science. These are modern versions of peer-review.
3. To improve care and reduce costs with this new science, we must focus on that other 80% of outcomes are non-clinical, including social and psychological determinants.
4. Cross-discipline collaboration and sharing will be a requirement.
5. This new science will arrive at evidence-based understanding of what works through a great wealth of shared longitudinal health data captured through mobile devices, sensors and health records. It must be mindful of the concept of transforming Data, to Information, to Knowledge, to Wisdom.
6. “The influence of the unique circumstances of the person — the personome — is just as powerful as the impact of that individual’s genome, proteome, pharmacogenome, metabolome, and epigenome.” Roy Ziegelstein, MD, JAMA, April, 2015
Openness Drives Effective Action
Health is often dependent on credible, timely and actionable information access. Information that is contextualized contributes to health literacy. Literacy fuels outcomes. Outcomes will fuel income.
7. Individuals have the right to make choices and control their health destiny with the best information available.
8. Open access to information that will enable individuals to make the best decisions and become well-informed individuals, particularly when curated and contextualized by clinicians.
9. Openness and privacy are not in conflict with the right kinds of identity, consent and data control mechanisms in place.
10. With this openness will come a required culture change. We must release information in order to ensure high quality information and code. In software, Linus’ Law states, “given enough eyeballs, all bugs are shallow”. Keeping information sealed until it is perfect, we will mean we miss opportunities to improve the data and fix the system.
Economics and Transparency
11. Information asymmetries lead to inefficient systems and sub-optimal outcomes. Access to life-saving, taxpayer-supported research must be open.
12. Health and wealth are tightly linked. Eventually, poor financial health will negatively impact overall health.
13. The cost of care can be a comorbidity. By ignoring costs in clinical decisions, conditions can worsen as financial stress may drive individuals to choose not to follow a plan of care because it is too expensive.
14. Individuals have the right to know how much care will cost before receiving care, both out of pocket and covered. When there is unpredictable complexity (not caused by medical error which shouldn’t be charged for at all), individuals should be informed of the most likely ranges.
15. Individuals must manage their lives along with their care.
Relationships and Peer to Peer Networks Will Become Central
Relationships are changing quickly due to ubiquitous connectivity, and we’re finding they are related to outcomes.
16. The most important “medical instrument” is communication. Communications drive actions, build relationships and create trust.
17. Exchange of personal health data will become enabled via decentralized Peer to Peer (P2P) networks and “HIEs of 1”. These P2P exchanges will improve health literacy, healthy action and a functioning health economy.
18. P2P networked conversations will empower new ways of organizing better health, allowing individuals to “organize without organizations” (h/t Clay Shirky) for better care.
19. Verifiable but anonymous, opted-in health data will become part of a unified view of healthcare for research and risk assessment. Individuals will have the choice to contribute.
20. To “Cognify” (h/t Kevin Kelly) is to instill intelligence into something. Medical knowledge will increasingly be “cognified” into the IoT and much of the world around us is made “smart” and data-aware. This is good, and will free people to care for themselves where they want to receive care.
21. All feedback has utility. Whether the news is good or bad, opinions become known, and becomes a source for improvement and competitiveness.
A high value healthcare delivery systems is the best economic development tool available. [A high value community delivers more to companies than any tax break could offer.]
Health education must be re-imagined for individual citizens and taught in school as a foundational curriculum.
22. True health system leadership comes from not just being stewards of hospitals and clinics but stewarding social and economic factors and the physical environment of a community, which account for half of outcomes.
23. Assessing community health needs and adopting strategies to address those needs will provide hospitals with a valuable opportunity to partner with community partners to identify strategies for improving health, quality of life, and the community’s vitality.
24. Healthcare organizations that aggressively promote health literacy will build community capacity in addressing health issues. This may mean enabling and curating others in the community to reach all facets of the community.
25. Start by teaching medicine and psychological self-awareness and resilience to kids (h/t Dr. Tom Ferguson). Starting in schools, health education needs to include the “medicine” we consume everyday. Insurance/benefits literacy should be included in schools’ financial literacy courses.
26. School lunches are an access point of great power: they reinforce or remove the unhealthy products we consume.
27. Hippocrates said, “Let food be thy medicine and medicine be thy food.” Individuals are “poisoning” themselves by the food they eat, largely without knowing it.
28. Hippocrates also said, “Walking is man’s best medicine.” Communities and workplaces that make it easy to walk and be active can gain an advantage over the status quo.
29. Healthcare waste is like a bandit stealing from our future. Healthcare is breaking U.S. schools. Money once directed to education is getting gobbled up by healthcare’s hyperinflation. This piles onto the problem that kids don’t learn enough about health, nutrition, finance or any of the things that lead to healthy, long lives.
New Choices for Individuals and Care Teams
The best medicine is a healthy lifestyle (healthy diet, exercise and sufficient sleep) and surroundings. Both the individual and care team should factor this in directly into healthcare, rather than an afterthought.
30. Health is not the limited time individuals spend in clinics. What happens in the other 99+% of their life has the greater impact on an individual’s overall well-being.
31. We will learn how to rapidly enable better choices through motivation, tools, and access to better choices and lifestyles. Each individual will respond differently, requiring a whole new level of personalization.
32. People are complicated with both innate drives and ingrained habits that work against long-term health. The psychology of understanding these motivations and habit change is critical to success in achieving better health.
33. Still, people will make incredibly smart decisions when they understand the true risks and choices.
34. Mental health is an equal component of a person’s overall health. Mental health directly impacts our physical health and our ability to recover from disease or medical interventions. Therefore, mental health needs to be deliberately and systematically integrated within the general health care system.
35. Open information and research are needed to understand the nutritional and environmental causes of disease.
36. Foods that are void of nutrition are the tobacco of this generation.
37. We have defined sick care very well, what happens when things go wrong and how to correct them. We have very little understanding of how to keep things going right, how to get people back on track when they go off the rails, nor how to continually optimize health. Innovations in research are changing this; new entrants will figure out how to enable it.
38. Systems will be designed so individuals can stay healthy and take as few drugs, have as few procedures, and avoid the system as much as possible by engaging in self-care.
39. The emergence of a flat world opens up new avenues to innovation about what has worked in other cultures. The US has the opportunity to learn to be open to ways of healthcare that originate outside our borders, particularly those that are more appropriate to the underserved.
Individuals and Engagement
40. Individuals and their caregivers are the greatest untapped sources of information, knowledge and motivation. Optimizing care means partnering with individuals and caregivers to empower them.
41. The effectiveness of engagement is tightly aligned with how convenient it is, how easily it integrates with where we live, work and play, how culturally relevant it is, and how cost effective it is.
42. Engagement and empowerment are different. Individuals are often most engaged, but least empowered. A partnership between individuals and clinicians is when health is optimized.
43. “Patient engagement” is valuable, but backwards. Individuals need the health system to be engaged with them regularly, and not just during visits.
44. An engaged individual is very different from “patient engagement” (h/t Gilles Frydman). One is individual-centered, one is health system-centered. Achieving full health is the goal, not engaging with the health system.
45. An individual can be engaged with their own health without entering the health system at all (h/t Hugo Campos). The goal of an individual is often to become/stay free of the healthcare system. Engaging means empowering them to do so.
Let evidence, not tradition or revenue and not misaligned incentives dictate care choices. Recognize that cost transparency and quality transparency, are critical to a well functioning system. Transparency is at the root of effective economies and better economics; therefore, more effective health decisions. Choice of treatment options must also be presented.
46. Choose wisely. Often times, less is more.
47. Oftentimes, early is better than late.
48. Overtreatment is one of healthcare’s greatest challenges. In many cases no treatment is much better than treatment.
49. A system that profits more from people with “problems” than those without, default set at “treat more”, is destined to collapse due to its inherent unsustainability.
50. Systems will become better aligned to better prevent overtreatment and undertreatment, driven by individual’s access to information, informed by statistics.
51. Individuals enter the healthcare system to get measurements, to be diagnosed, to seek answers, treatment and learn. Individuals will seek alternatives outside of expensive, inconvenient care centers. This will drive positive overall change in the health system.
Medical education must be re-imagined.
52. Medical education will be made continuous, engaging, and scalable in the age of increasing clinical demands and limited work hours.
53. Medical educators will make thoughtful use of technology and learning design. Those that excel will learn how MOOCs, community engagement, social media, simulation and virtual reality might change the face of medical education.
54. The flood of new medical information is impossible to keep up on for any one person. Physicians and other care providers will be enabled by better systems for filtering what’s valuable for an individual’s care.
55. Effective medical education must and will evolve rapidly to focus on care delivery and the use of digital tools in care delivery.
56. Medical education will recognize that because only 10–20% of health outcomes are driven by clinical care, physicians must also be stewards of community transformation. Physicians are in the best position to be good partners within a multi-disciplinary alliance enabling community transformation.
New Data Ownership Rights
Information rights are required to empower consumer-mediated exchange. An individual’s data is a measure of their health and their life and should be guaranteed access. Appropriate government oversight can support and accelerate these items. Regardless of political stripe, there is shared interest in supporting openness and standards that encourage the appropriate secure flow of information.
57. An individual’s access to and management of data about him/herself is a fundamental human and property right. Why is it easier to have your medical data hacked than for you to get access to it? (h/t Eric Topol)
58. Monopolies on medical knowledge and information are unethical.
59. Now that all information can be connected, all the time, there should be only one record of health data that comes from an individual, controlled by the individual. Problems with HIPAA and “information blocking” are symptoms of a broken, pre-internet, paper-driven era.
60. Platforms will be developed to enable the rights and transactions around health data property. These platforms will be decentralized, yet enabled to focus on the individual in an instant. Be prepared.
61. Individuals have a right to any data that comes from a measurement of an internal state of their body, including medical devices.
62. Individuals have literally died waiting for their lab data. An individual’s lab and other data should be made accessible to individuals as soon as it is available.
63. Medical regulations exist to protect individuals from medical harm. Data, ideas and information in the hands of individuals causes no medical harm.
64. Individual may have access to metrics and analysis about their own body without a doctor’s permission as long as accessing that data poses no significant medical risk.
65. Individuals have a right to health data privacy. Rights to sharing must be established with the individual it originates from, or their legal agent, in advance of sharing.
66. Health data collected about an individual cannot be used to determine a person’s access to capital (credit ratings), employment, education, housing or healthcare services. This will be legislated and empowered by new technologies.
New Roles and Relationships for Providers
The best care is realized when the healthcare partnership between clinicians and their patients is fully empowered.
67. Misaligned reimbursement schemes have impaired providers from doing the primary job of healing and have often robbed them of their humanity. Paying for value will help them get the job of healing back.
68. The enlightened clinicians who embrace these guiding principles, combined with empowered individuals guiding their own care will become a powerful competitive advantage.
69. The most trusted professions are nurses, doctors and pharmacists. With the trust individuals have in these professions, they activate us to do things we wouldn’t normally do. Respect this trust.
70. World class teams require a holistic view of a person’s complete health, which includes not just their physical health but also their mental health.
71. Relationships are fuel for motivation and behavior change (both positive and negative). Motivations, triggers and ease of action are keys to enabling behavior change.
72. Aim to motivate, teach, consult and enable. Clinicians cannot expect participation in a care plan (fka “compliance” or “adherence”) without mutual understanding. Recognize that when an individual is not incapacitated, he/she is in control of whether he/she fills a prescriptions, follow a care plan, etc.
73. The best care is and will be collaborative beyond the walls of any one institution. Just as “the smartest people work for someone else”, the smartest providers practice outside of this clinic and this hospital. The smartest provider may, in fact, be a collective, or the crowd. New ways to open communications will drive better care.
74. Many times, the best place for interaction between the clinician and an individual isn’t at the clinic. We can flip the clinic. Much of what has been done at a clinic visit can be done more effectively in the comfort of an individual’s home via email and other digital tools or in social settings like churches or community organizations.
75. The most relevant providers will learn and will be conversant in data analytics and tools. They will be experts in care delivery, not just diagnostics and traditional medical science.
New Life Science & MedTech/Device
Don’t make the same mistake railroad companies made thinking they were in the railroad business (rather than the transportation business). People crave independence and will seek more personal transportation, a more direct route to where they’re headed. It’s limiting to think of a company as a pill or device company. Rather, they are in the prevention and condition management business, and a partner in working with individuals and their data. There is an emerging confluence of pills, devices, technology and biology that will lead to whole knew ways to monitor and treat diseases and conditions.
76. Tomorrow’s leaders will redesign development and trials to capitalize on the aforementioned New Science dynamics and mobile technologies.
77. New and nonobvious partnerships will need to be forged to ensure leadership in the future. Alliances with healthtech and consumer health/Internet companies will be as important as alliances with academic medical centers have been in the past.
78. Post-trial relationships with individuals will allow co-creation and insights not possible before. That is a largely untapped opportunity. ResearchKit is just the beginning.
79. The individual’s relationship to a device or therapeutic may be as profound as their relationship to their doctor, or more so. Be available and open to engagement to make improvements.
New Health Plans, New Health Benefits
With the lowest Net Promoter Score of any industry and unprecedented regulatory changes, there has never been a more logical time for health plans to radically reinvent themselves.
80. Fee for service is dying. Transition now in every way you can.
81. The dirty secret of health plans is that higher care costs have, counterintuitively, led to greater profits for the plans. This is changing. Winning health plans will capitalize on the opportunity to fundamentally rethink plan design to be optimized for the fee-for-value era.
82. Catalyzing patient engagement will lead to better care and a more competitive offering.
83. The next dirty secret of health plans is that they are money managers. Longer they hold on to money, the more they make. Employers and unions are driving the next wave of healthcare innovation, protecting their employees/members.
84. Rather than reflexively denying claims and building up a mountain of ill will, insurance companies should invest resources in protecting their member’s financial security.
85. Customers will, in effect, “self-deny” their own claims. A new metric for success is the “Negaclaim” — an unnecessary claim avoided. This isn’t about denying care. Just as energy consumers aren’t interested in kilowatt hours, individuals aren’t interested in health claims — they want health restored and diseases prevented.
86. When individuals are fully educated on the trade-offs associated with interventions, they generally choose the less invasive approach.
87. The ACA defined “essential benefits” but there will be a corollary about rights to “essential access” as part of coverage. Any modern health plan offering will include virtual visits, transparent price info, updated provider directory, same day e-mail response, next day test results, etc. — all imminently doable with today’s modern technology.
88. As the second or third biggest expense after payroll, CFOs & CEOs are failing in their fiduciary responsibility by being overly passive in how they procure health benefits. A rethought healthcare purchasing plan drives direct, financial returns but most importantly enables your valued employees to do what they desire — realize their full potential. Elements are defined at healthrosetta.org.
89. Genomics information and testing will be key components of personalized medications, tailored to provide the best dose/response relationship in each patient. Because of their importance, these tests and genomic information must be covered by health plans and insurance.
Much of our cost and quality problems come from where medicine is practiced and by whom. De novo is de rigueur.
90. Hospitals have provided amazing service for the last 100 years, but location is becoming less important for healthcare. Care can happen almost anywhere at lower cost. What conditions hospitals treat, and how hospitals serve their communities will dramatically change over the coming decades.
91. Health systems, your technology procurement process must be up to the task. Systems grown and optimized for the waning fee-for-service often have the polar opposite design to what will optimize the fee-for-value era. Virtually every new healthcare delivery organization that is outperforming on Triple Aim objectives, has deployed new technology re-imagined for the fee-for-value era.
92. Outside of healthcare, millions of organizations have reformulated how they interact with their ultimate customers with better communications tools. Next generation healthcare leaders understand that tools will focus on communication over billing.
93. Health system leaders, learn from the another local oligopoly in your community — the venerable daily newspaper. While they spent the last couple decades worrying about cross-town and traditional media company competition, it was death-by-a-thousand-papercuts that has been their undoing. Newspaper executives dismissed an array of new asymmetric competitors including eBay, craiglist, Monster.com, Cars.com, Facebook, Groupon, ESPN, CBS Marketwatch and more who stole advertising, media consumption or both. Health system executives are doing the same thing today, and the issue is the same: how valuable content will be delivered in the future. The content is different, but the issue of distribution is the same.
94. Winning healthcare delivery organizations recognize that the Quadruple Aim will deliver sustainable success. The “forgotten aim” is a better experience for the health professional . Layering more bureaucracy on top of an already-overburdened clinical team ignores that the underlying processes are frequently under-performing and that a bad professional experience negatively impacts patient outcomes.
95. Healthcare organizations wanting to reinvent can harness the new opportunities by unshackling their smart, innovative team members and outside thinkers to reinvent their organizations for the next 100 years. Those that enable their customers will emerge as the leaders for the next 100 years.
Please note that this reflects the personal opinions of the curators and contributors, not those of organizations they consult with or are employed by.
We greatly appreciated the following individuals who provided invaluable input and feedback into this document:
Dr. Garrison Bliss, Sumanth Channabasappa, Nick Dawson, Dave deBronkart, Nate DiNiro, Esther Dyson, Gilles Frydman, Dr. Adrian Gropper, Susan Hull, Lisa Suennen, Dr. Sue Woods, Balaji Srinivasan, Dr. Eric Topol and more to come.