The Federal Vision For Healthcare IT: A Dystopian Paradise
In a year not too distant, Loretta, a woman in her late 20s, hears a pleasant tone from her watch and checks to see a text. The message isn’t from a friend or work, it’s from the watch itself: “You’re pregnant.” Loretta is surprised; conception was merely days before. But pregnancy is one of the many tests constantly checked by her wearable and household technology.
A minute later, a second text comes through — this time automatically generated by her doctor’s office — conveying a list of dates and times that her calendar and her physician’s are both open for a video conference. Based on that meeting, a plan of care will be agreed upon, with any necessary medications automatically delivered to Loretta’s home, dispensed through a small, web-connected device in her kitchen, paid for by her insurance company automatically and seamlessly.
While this story may seem a fairly boring scene in a Philip K. Dick short story, it also may be the most natural result of actions currently being undertaken by a powerful organization — the United States government. Mostly unnoticed, and hidden within hundreds of pages of bureaucratic prose, federal agencies overseeing healthcare information technology (HIT) have laid out a vision not only of your future healthcare, but potentially everything you do.
The implications of that vision are startling and, at once, both exciting and sobering. Taking into account recent technology and market trends, the government is actively supporting initiatives that could, and in some cases almost certainly will, lead to:
- Increased use of in-home, wearable and portable devices that monitor your activities and health 24 hours a day and send that information to your caregiver (or, potentially, your insurer and employer).
- A Learning Health System (LHS) that will take the knowledge gained from millions of patients, their genetics and their every health service, applying it to individual patients’ specific conditions.
- Cutting-edge research finding unexpected causes and treatments for numerous diseases, without any test subjects, using nothing but data already on hand.
- Patients directly accessing, controlling and even correcting their medical records, no matter who the provider.
- A Faustian Bargain, faced by each individual or society as a whole, in which one must choose between personal privacy and the full benefits of available healthcare services.
The Government’s Role
While other industries have adopted IT without much, if any, prodding from government, in the U.S., HIT investment has required much more involvement. The reason is fairly simple — the largest actor in the healthcare market is the government. Through programs like Medicare, Medicaid, the VA and TRICARE, the government controls approximately 45 percent of all healthcare spending in the U.S. (compared to 33 percent by all private insurance combined).
In addition, unlike financial markets where the consumer picks which bank to patronize, most insurance companies are chosen by an individual’s employer, and that insurer chooses which healthcare providers are included in its networks.
When bank customers wanted the ability to transfer money electronically, banks gave them that option. When a patient wants to transfer health records electronically, her physician, hospital and insurance company all shrug and say, “Sorry.”
A choice between privacy and health may quickly be approaching us as individuals and as a society.
In response to the lack of innovation in HIT, the American Recovery and Reinvestment Act of 2009 (ARRA) provided $1.5 billion in grants for the acquisition of HIT, gave statutory authority to the Office of the National Coordinator for Health Information Technology (ONC) to chart out a vision for HIT and changed the rules regarding Medicare and Medicaid to provide incentives for a provider who is a “meaningful EHR [electronic health record] user.”
The subsequent “Meaningful Use” rules have described how your hospital or physician can receive incentives for adopting an EHR and otherwise using HIT. Through regulations, federal agencies like ONC, CMS (in charge of regulating Medicare and Medicaid), OCR (the Office of Civil Rights, which enforces the HIPAA privacy and security regulations) and the Food and Drug Administration (FDA) have set a course for how HIT money is to be spent and, in turn, the general direction for HIT in the future.
A Framework For Technology
In the realm of HIT, the ONC’s Federal Health IT Strategic Plan (Strategic Plan), in combination with related regulations and market forces, provides a useful guide to where the federal government hopes to see HIT move — and potential winners and losers.
Winner: Apps And Devices
An interesting section of the Strategic Plan cites a 2010 working paper, stating that out of (i) social and economic factors, (ii) health behaviors, (iii) clinical care and (iv) environmental factors, health care delivery systems account for only about 10-20 percent of health outcomes. The guidelines then promote increasing that percentage by using HIT to gain additional control of information about individuals’ health and, ultimately, patients themselves.
The most obvious opportunity to achieve control over a person’s health outside of the clinical setting is through technology. As the Strategic Plan says:
“Existing and emerging technologies provide a path to make information and resources for health and health care management universal, integrated, equitable, accessible to all, and personally relevant. …[O]nly one in eight Americans track a health metric like blood pressure or weight using some form of electronic technology. Federal agencies seek to expand the ability of individuals to contribute electronic health information that is personally relevant and usable to their care providers so that both can use it effectively in health planning.”
This goal of promoting electronic technology to track health in daily life is being brought to reality though the Meaningful Use rules. In their latest iteration, the rules added a definition of “application-program interface (API).”
Healthcare is, and always has been, about analyzing information.
While more than a little vague, the rules make clear that providers can leverage in-home and wearable devices, as well as apps on mobile devices, in order to increase Medicare payments. One agency that could have limited this use of APIs is the FDA, with concerns over patient safety. In January 2015, however, the FDA issued draft guidance making clear that it would not get in the way.
Loser: EHR Vendors
The idea of sharing information electronically is taken as a given in almost every industry except healthcare. When one is in need of cash, numerous ATMs are available, and the only difference between one machine and the next is the amount of fees charged.
By contrast, electronic health records (EHRs) utilize proprietary systems owned by EHR vendors, are generally considered cumbersome by physicians, are the largest IT expense for most hospitals and providers and actively limit the ability of providers, researchers, public health organizations and others from sharing and compiling relevant information.
Just as profit margins have moved from hardware to software, web content and apps, so too one must anticipate that with the government’s (sometimes inconsistent) push toward interoperability of electronic records, the value in HIT will move away from EHR systems and to the data housed on it.
This trend will only be pushed further by new standards for the exchange of healthcare data and development of apps and devices in which individuals will be providing, and accessing, their records. Data stored in the cloud by an app developer, and automatically integrated into an EHR, can easily be integrated into any other EHR. Just as a website can be accessed by a number of browsers, numerous market players may enter with products that can access any EHR, organize the data in it in various ways and increase the utility of the data while decreasing the cost of access.
Winner: LHS And Research
Healthcare is, and always has been, about analyzing information. A physician, whether in 1920 or 2020, treats an individual by asking questions, gaining information, analyzing that information and recommending a protocol. The tools used to assist in collecting and analyzing information, however, are evolving exponentially (the slow-down of “Moore’s Law” notwithstanding — see here and here).
One potential tool being developed to assist providers is known as the Learning Health System (LHS). The idea of the LHS has arisen from several sources, but particularly from the Institute of Medicine’s Roundtable on Value & Science-Driven Health Care (IOM Roundtable) and the Learning Health Community (LHC).
The vision of LHS, as stated by the LHC’s home page, is one where a physician would be able to tell their sick patient, “I can make a treatment recommendation informed not only by the latest clinical trials, but also by the real-world health experiences over time of every patient like you who has had this illness — and in turn I can tell you with a specified range of confidence which treatment has the greatest chance of success for a patient specifically like you.”
If successfully developed and implemented, the LHS could collect data from every major provider of healthcare around the world, as well as every significant clinical research study, then analyze that data based on a particular patient’s demographics, genetics, history, diagnoses and symptoms and provide to the physician the most relevant available treatment options listed by likelihood of success.
Information you provide to your doctor is covered by HIPAA, but information your phone collects is not.
The LHS is perhaps the greatest driving factor within the ONC’s Strategic Plan, with references to LHS literally from beginning to end. For example, it notes the “Precision Medicine Initiative,” which has the long-term goal of creating a “research cohort of more than one million American volunteers who will share genetic data, biological samples, and diet and lifestyle information, all linked to their EHRs if they choose.”
While this appears to be a bold initiative, the ONC and other agencies appear to already be examining the next step — integrating into the LHS information about citizens’ everyday lives. The robustness, and potential effect, of such information is staggering.
For example, populating the LHS with information gathered through APIs could find links between one’s lifestyle decisions (e.g., how much and when one smokes), social factors (neighborhood, income, work stress, etc.) and bodily responses (e.g., blood pressure and heart rate) for use in research, diagnosis and treatment. To use the term “precision medicine” is apt. LHS could sharpen our current, scatter-shot research into a scalpel’s edge.
Potential Loser: Privacy And Security
Perhaps the largest potential downside to a boom in HIT relates to our sense of privacy and the security of information shared. One could, of course, opt-out of sharing personal information, just as one may refuse to click “I agree” on end-user license agreements, refuse to carry a cell phone and stay off the Internet. For most people, however, permitting sharing of health information may become automatic, particularly when the potential price of opting out is one’s health.
Many may assume that such concerns are insignificant because health information is protected by privacy laws such as the Health Insurance Portability and Accountability Act (HIPAA). HIPAA, however, only applies to providers, payors and certain clearinghouses (and their associates) and would not cover many of the sorts of companies that may collect health data in the future.
Information you provide to your doctor is covered by HIPAA, but information your phone collects is not. State laws are likewise limited, and can be inconsistent with each other. If governments broaden privacy laws, however, they may also limit the usefulness of health data and undercut the benefits of HIT. A choice between privacy and health may quickly be approaching us as individuals and as a society.
The Exciting Dystopia Ahead
Few appear to comprehend the radical shift in healthcare on the horizon, and even fewer are prepared for the changes that will be brought by electronic transformations within healthcare.
While the U.S. government has historically been slow to interfere in the market, technological changes, as well as the ever-growing cost of healthcare, are forcing it to catch up and even push change forward.
Those paying attention may have an opportunity to take advantage. Much of the market, and society in general, however, appear to be underestimating the significance and rapidity of change.
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