DAVID C. KIBBE and BRIAN KLEPPER
Right now, American health care information technology is undergoing two enormous leaps. First, it is moving onto Web-based and mobile platforms – which are less expensive and facilitate information exchange – and away from client-server enterprise-centric technologies, which are more expensive and have limited interoperability. In addition, more EHR development activity is headed into the cloud, driven by large consumer-based firms with the technological depth to take it there. Both these trends will facilitate greater openness, lower user cost, improved ease of use, and faster adoption of EHRs.
But they could also impact the shape of EHR technologies in another profoundly important way. What is often lost in our discussions about electronic health record technology in the US is the relationship these tools have to our health and health care problems…globally. We could be designing our health IT in ways that are good for the health of people both here and around the world, not simply to enhance care in the US.
Designing health data and management tools only for the particular operational needs of the current US health system may be doubly wrongheaded: It risks locking us into outdated technology and an expensive, dead-end path, while, at the same time, it could restrict collaborative exchanges of ideas and innovations that could improve health care here and abroad through better designed information technology.
Perhaps we should design EHRs for a small planet.
Rene Dubos (1901-1982) was a microbiologist who produced the first commercially marketed antibiotic. He also wrote widely about the relationship of humans with their environment, notably in So Human an Animal (1968), which won a Pullitzer Prize. In 1972, with economist Barbara Ward, he co-authored Only One Earth: The Care and Maintenance of a Small Planet, which set the issues and tone for the first major international conference on the environment. Dubos also first used the term “think globally, act locally,” advice to consider the widest possible consequences of our behaviors, but to take action in our own communities.
What would our EHR technology design efforts in the US look like if we incorporated Dubos’ more expansive framework? What principles might shift our thinking about EHRs away from America’s failing health system paradigm — with its illusion of unlimited resources, delivered by a fixed and ritualized set of professionals and institutions, and costs that double with each passing decade — towards a vision in which EHRs promote sustainable efforts in disease prevention, health improvement, social responsibility, and environmental protection? How might we think about EHRs globally while acting locally?
Principle 1: Define success with local health and health care problems in mind.
Defining EHR success is important, partly because US federal policy for EHR adoption is currently so dynamic. It would be easy to simply define success in terms of physicians’ short term acquisition of today’s EHRs, and the economic boost that might result from new government IT spending (e.g., IT jobs and EHR vendor profits). But Dubos might argue that successful EHR adoption should require measurable social and ecological benefits in the communities where the technologies are deployed, after consideration of the ‘big picture’ in which health spending is one among many societal priorities competing for limited societal resources, and therefore ought to be conservative.
The US’ current EHR adoption strategy channels money directly to doctors and hospitals, among the most privileged professional groups in any community. It could, instead, send those funds directly into the communities served, focusing on the local circumstances that result in fragmented, disorganized, and inconsistent health care delivery within driving distances of its citizens. EHR technologies could address communities’ continuity and access-to-care problems, and relate these to major preventative and chronic illness management challenges, e.g. vaccinations, obesity, and risks of heart disease. More and more people in adjoining communities could be reached by building on successes. Lowering health costs nationally is an important goal, to be sure. Maybe the best way to get there is to stimulate uses of health IT to improve individual and community health through local action. (It goes without saying that the system’s financial incentives would also have to be re-aligned.)
Thinking globally and acting locally would require us to study and plan how EHRs might benefit different communities, as unique populations with particular health risks, public health problems, and care delivery challenges. We would have to study those risks and challenges in each community, or in groups of neighboring communities. This is not easy, and it can be time consuming.
But the alternative, which seems to be to spend huge amounts of state, federal, and local dollars on one-size-fits-all health IT projects, top-down EHR systems that work for the VA or DOD but probably nowhere else, or data exchange efforts that may not be capable of solving, or even suitable to, the problems most at hand in that locale, could be simply disastrously wasteful by comparison. What works in central Indiana, quite honestly, may not be the right thing for Green Bay, Wisconsin, Helena, Montana, or Pamlico County, North Carolina.
Principle 2: Make the best possible use of existing IT resources before building or installing expensive new EHR systems.
Rather than ask “What could we do if everyone had computer systems like the most advanced large groups, e.g. Kaiser or the VA, let’s ask “What could we accomplish if we utilize the computers everyone already has?”
Experience has shown that it is not wise to expect big and complicated things to somehow become small and simple. For one thing, costs don’t necessarily scale. In contrast, though, the evidence is now overwhelming that with browser-based software running on personal computers and cell phones, and small applications running on hand-held devices, like the iPhone, consumer use can grow at extremely rapid rates and lead to complex social networks, rapid communications and feedback loops, and massive search and data analysis capability.
Examples abound of the kinds of resources available through inexpensive personal computers connected to the Internet, cell phones, and the newer smart phone technologies. Skype, the Internet-based voice communications company, has over 500 million registered users world-wide, which would make it the largest telecom carrier, if it were one. The top 25 wireless providers globally already service over 3 billion registered customers. The iPhone, introduced in 2008, has more than 57 million users, the fastest user growth in consumer technology in history, many times faster than the earlier rapid growth in PCs or the Apple iPod. Facebook – the social network platform where people send email, chat, share photos, and share interests – now has 350 million users and is growing at 660,000 per day! Lest we forget, these ubiquitous technologies are not just used for fun and games: massive amounts of data are being exchanged as well. And they are getting cheaper to own and operate all the time.
And yet they are for the most part useful only at the margins of health care, an industry that has somehow walled itself off from IT modernity. We certainly have not yet capitalized on the health and medical uses of the extraordinary networked computing resources available now in almost every home and work site in this country. EHRs for a small planet need not cost $54,000 per physician, which is the current estimate used by ONC and HHS.
It would be a critical mistake to waste our resources, time, and effort building new specialized state or regional data centers requiring complex and proprietary identity management technology for access, and to train a generation of IT professionals how to manage these expensive centers and the technology deployed there, when better design and efficiency could be obtained by use of the existing “off the shelf” general- and multi-purpose data highways, application platforms, and end-user computing capacity now available for health data exchange.
Principle 3: Design EHRs for the smallest unit of care delivery, with a focus on connectivity and communications.
Connectable EHRs can be designed for small medical practices and clinics in primary care, where the great majority of care is delivered, and for patients’ themselves — in their homes and places of work. Designed from the local, grassroots perspective, EHR technologies would also focus on affordability, ease-of-use, and especially on connectivity and continuity of information across those units in a given community, using existing computers, cell phones, the Internet, and yes, even fax machines.
Our current approach to health care IT, in contrast, is biased towards the needs of a handfull of professionals working in a relatively small number of large enterprises, such as hospital systems, and in large multi-specialty practices. These large units typically represent the most complex “use cases” for EHRs, based on the needs of the most complicated and sickest patients, requiring the most intensive usage of drugs and pharmaceuticals, and at the far end of the spectrum in terms of complicated ancillary medical devices, such as MRIs, medicated stents and proton accelerators.
These large health care units are often fiercely competitive and have little use for data exchange with competitors, and even less interest in using computing resources to reach across the communities they serve. As a result, they may be among the least appropriate and least competent stewards of community-based health IT resources. And yet their representatives dominate the steering committees and governance boards for the nation’s health information exchanges (HIEs) and regional health information organizations (RHIOs), where a big chunk of the federal funding is now going.
If waste is the failure of design, then designing EHRs for a small planet would avoid lengthy and disruptive installations and long training cycles involving expert consultants. Instead, they would favor modular, browser-based EHR software that are familiar to physicians, their staffs, and their patients, and that can be navigated simply.
Implicit in this design priniciple is a requirement for minimal training that focuses on how to use the software to best improve care, rather than on which buttons to push in which sequence to optimize fee-for-service reimbursement. EHR software that looks more like Facebook and less like a database manager’s tool kit, that can work through web browsers and mobile devices, and that can be incrementally expanded as new uses arise, is not only likely to be more adoptable than today’s EHRs, but also less expensive to own and operate.
Principle 4: Recognize that what sustains most information technologies is people’s desire to connect with one another.
Email is the “killer app” of the Internet. Facebook and Twitter have become the amazingly fast growing online social networks. Human beings seek connection at nearly every opportunity. Technologies that facilitate that connectedness and then provide key utilities are most likely to succeed.
Maintaining and restoring health, preventing disease, and the act of caring for others who are in need due to problems of the body and mind: these are among the most basic social activities of human beings, our communities, and our cultures. And yet, for complex reasons associated with money and power, our health system and the care it delivers is too often fragmented, dis-connected, and isolated. And its technological disconnection is both a symptom and a substrate of this phenomenon. Physicians and nurses face many barriers in communicating amongst themselves, with their patients and with their patients’ caregivers. The current crop of EHR products do virtually nothing to address this problem. In fact, EHRs in the US may have exacerbated our health care dis-connectedness.
EHRs that can share data, information, and connect the experience of patients, caregivers and doctors more directly are much more likely to be utilized at the community level than EHRs that in essence capture and remove data, isolating them and their potential social uses in faraway databases that no one can get into.
The huge success of health-related social websites – like PatientsLikeMe.com, DiabeticConnect,com and Sermo.com – are testament to the desire that many people have to close what Adam Bosworth has called the “collaboration gap” that stands between the limitations of the legacy health care system and the almost infinite benefits that arise from participating in self-help and online socializing activities. People who share their experiences – and data about themselves – know that this is helping them close the collaboration gap. But this gap is being perpetuated by EHRs that are organization- and enterprise-centered, and can only be substantially closed if physicians and medical groups in communities around the country use EHR technology to leapfrog over the communications and socialization barriers inherent in their older technologies. This will require new forms of EHR technology capable of socialization, which we have described elsewhere as Clinical Groupware.
Principle 5: Separate data from the applications and from the transport layer.
It is a stunningly simple yet powerful feature of the most familiar and widely-used information technologies that data – the message – is deliverable regardless of the sending or receiving applications, and independent of the network or transport layer that carries it. Email messages can be sent and received via many hundreds of client applications (what you and your computer use to compose the email or to display a received email.) Email and messaging services can carry many dozens of different kinds of attachments, e.g. pdf documents, across both open and secure networks, and networks with different kinds and levels of security protection in place.
This is a small planet idea that is the direct consequence of the openness of Internet protocols, but one that has not yet become incorporated in US health care, where data messages, applications, and network transport protocols remain unendingly, even stupifyingly, proprietary. Not only do these approaches perpetuate “walled gardens” – hospitals using one EHR system can’t send a simple electronic medical summary to another hospital using another EHR system across the street — but it also is a barrier to the innovators who would design, build and implement new, low cost applications like modular EHRs.
Clay Shirky makes this point in a blog post recently:
Thus the question for broad participation… is not: “What will the most complete system look like for the richest and most technically adept institutions?” Rather, it is: “What’s the simplest and most low cost way for a small vendor or new market entrant to get a small practice tied in?”
…Here’s what a workable set of transport standards will not do: It will not assume to know what kind of applications any given network participant is running locally. Once the data are delivered, it should be usable by everything from the simplest to the most complex application, since the recipient of the data will have the best understanding of what works in their local context.
This ability to separate data from transport and applications from data is the essential pre-condition for innovation — a group that has a valuable new idea for presentation of data for clinical use should not also be forced to think about the data encoding or the way the data are transported. Groups working on new data encodings should not be tied to a pre-existing suite of potential applications, nor should they have to change anything in the transport layer to send the new data out, and so on.
Patients and doctors in offices, homes, laboratories and pharmacies most often need information, and most often they need it in the form of small amounts of summary data such as a medication or problem/diagnosis list, a specific allergy, a limited number of recent or historically important lab tests or images. Where there is continuity of care and information flow, especially, there is rarely the need to access the complete or comprehensive medical record or its full contents.
For most ambulatory and outpatient clinical care needs, simple dashboard and summary health “EHR light” products may be sufficient, and there is a logical progression towards more complex health IT as the acuity of care increases. Modular design of EHR technologies may help to bridge this gap without creating large discontinuities of user interfaces and may also keep prices for health IT in the community setting at a lower point than otherwise.
In the U.S., many of our health problems result from the growing burden of chronic diseases occasioned both by an aging population and our sedentary lifestyles. In much of the developing world, by contrast, the local health problems – pandemics like HIV/AIDs, malaria, and drug-resistant tuberculosis – result from poverty and a lack of basic public health resources. However, similar EHR technology in each of these settings can provide efficient health data exchange and information management. Both individual and population health status could be improved with medical records that are inexpensive, simple to use, and capable of network exchange
To this point, each of the above principles for small planet health IT is already being put in place effectively in many developing countries, where cell phones are used to remind patients of their medication regimens and are the vehicle for relaying laboratory test results and vaccination information from provider to provider in sparsely populated and very resource-limited communities. As part of the
Millenium Villages Projectin Ghana, for example, cell phones are part of a program that is dramatically improving the chances of survival for pregnant women and their newborns.
Our brethren in other countries, developed and developing, face many of the same challenges obtaining good quality health care that we do here in the United States, including realizing the promise and hope offered by health IT. If we persist in federal EHR policies that “over-serve” local US communities’ needs by developing complex and expensive systems of health IT, we may not only be missing the mark at home. We might also be missing the opportunity of helping the other inhabitants of this small planet.