The average person’s ability to access data and communicate electronically is proliferating exponentially. Consumer adoption of digitally networked services has transformed the culture of many industries—often in ways unimaginable barely a decade ago.
Consider these examples of rapid consumer adoption of web-based technologies:
A key ingredient to the successes cited above is a fresh openness toward consumer access to, and contribution of, information. By contrast, the health care industry is moving more slowly toward providing consumers with online access to data and services, as evidenced by a still-modest distribution of electronic personal health records (PHRs) with significant bi-directional capabilities.
PHRs encompass a wide variety of applications that enable people to collect, view, manage, or share copies of their health information or transactions electronically. Although there are many variants, PHRs are based on the fundamental concept of facilitating an individual's access to and creation of personal health information in a usable computer application that the individual (or a designee) controls. We do not envision PHRs as a substitute for the professional and legal obligation for recordkeeping by health care professionals and entities. However, they do portend a beneficial trend toward greater engagement of consumers in their own health and health care. (See Appendix A for a more detailed discussion of PHR platforms, data suppliers, data integrations, business models, and target audiences.)
A Markle Foundation survey indicates low consumer awareness about PHRs; many people simply have not been exposed to or even thought about the technology. When presented with the concept, however, consumers indicate a high level of receptiveness to the types of services a PHR might provide.4 Sixty percent of Americans favor the creation of secure, online PHR systems that would support their ability to view and refill prescriptions, get lab results over the Internet, check for mistakes in their medical records, and communicate with clinicians via secure e-mail.5
Over the past few years, more than 100 PHRs and related technologies have proliferated in the United States and abroad. Despite the increasing availability of these technologies, only a small proportion of the population uses PHRs.6 Indeed, some observers express concern that PHRs will fail to ever catch on with the general public.7
The low penetration of PHRs to date raises the question: Can PHRs be designed to contribute substantially to transforming health care in the way that other innovations have remodeled their sectors? This paper does not attempt a comprehensive analysis of such successful innovations in sectors other than health care, but we observe that they share a few basic traits:
1. They are highly useful. All of the examples cited above provide rapid utility and convenience by taking available digital data, making it digestible, and providing immediate value to consumers.
2. They are easy to use. Web applications that have diffused broadly typically deliver not only high utility, but also a simple user interface that does not limit or burden the consumer.8
3. They are free or inexpensive. Whether supported through advertisements or not-for-profit foundations, dramatic-growth applications generally collect small or no fees from consumers.
These observations relate to the applications themselves and their business models. They are each clearly essential and deserve further evaluation. Our focus with this paper, however, is on a fourth characteristic of web-based technologies that have transformed culture in other sectors:
4. They rapidly proliferate due to the power of networks. Consumers connect to various networks via their credit cards, cell phones, e-mail accounts, affinity club memberships, and so on. Search engines point to information residing across a vast number of sources, all tied together by the Internet (which itself is a network of networks). Point-to-point communication tools like e-mail and cell phones work because they can slice across competing networks. Credit cards work across competing banks because there are worldwide networks that tie them together. People trust strangers on eBay because there is a trusted payment network, PayPal, as well as a network of buyers and sellers who provide accountability by collectively and publicly rating each other. Sites like Wikipedia, Craigslist, and MySpace have created arrays of communities of people with similar interests.
For decades, making flight reservations was a time-consuming task. Airline representatives kept passenger reservation data on handwritten index cards.
In 1953, a chance meeting between then-president of American Airlines, C. R. Smith, and a sales representative for IBM, R. Blair Smith, led to the first electronic reservations system, called "Sabre."i
The success of Sabre motivated other airlines to create their own reservations systems. For example, United Airlines (UA) in the 1970s created the "Apollo" reservations network, which allowed travel agents to book tickets on UA flights as well as its competitors. United felt that the marketing power it gained from offering the reservations network outweighed the losses it might incur from travel booked on other airlines. In these early years, airlines attempted to gain competitive advantage by providing controlled access to their booking service and by various display and presentation approaches to the available flight options. Ultimately, four reservations networks emerged to serve the U.S. market.ii
For years only travel agents and airline reservations representatives used the airline reservations networks. However, following the emergence of Internet travel sites, consumers suddenly gained direct access to these systems. Consumers shifted to self-service for online comparative shopping. Two consequences of this consumer-driven change are the drastic contraction of the travel agent industry and the rapid ascendancy of low-price carriers. Today, travel reservation sites increasingly compete with each other based on other services, such as booking restaurants and selling event tickets.iii
By providing consumers with direct access to networked data from multiple competing services, the electronic reservations systems enabled efficiencies and transformed the sector far beyond their original purpose. Similarly, online consumer access to the real estate industry's Multiple Listing Service (MLS) has shifted greater autonomy to homebuyers and sellers, and online banking services have streamlined transactions and services for both consumers and financial institutions.
In contrast, today’s PHRs are “un-networked.” They generally require the consumer to enter data manually or get a view of information from a single entity such as one health plan, one pharmacy, or perhaps one health care provider’s electronic health record (EHR). Yet most people have relationships with many different doctors and health care entities; particularly those Americans with multiple chronic conditions—more than 60 million today and estimated to reach 81 million by 20209—must coordinate their care across several providers and entities. If the PHR is “tethered” to one particular relationship, say with one provider or one pharmacy service, it may not meet the long-term needs of those who need it most. Some people in a stable relationship with one integrated delivery system may today have their information adequately accessible through an application from that institution. However, for most people, over time, PHRs would be much more useful if they were networked to aggregate the consumer’s health information across multiple sources (e.g., the consumer’s insurance eligibility and claims, her records from all of her doctors, her lab results, her pharmacy services, her diagnostic imaging, etc.).
The mere aggregation of the consumer’s data, however, should not be an end in itself. The true test is whether the network makes it easier for ordinary people to coordinate and engage more actively in their own health and health care. We see a networked environment for PHRs as a foundation for Americans to improve the quality and safety of the care they receive, to communicate better with their doctors, to manage their own health, and to take care of loved ones.
This paper argues that consumers can help accelerate transformative change, particularly in a networked information environment. However, we emphasize that clinicians also have a critical role in realizing the full potential of networked PHRs. Consumers continue to see doctors and other health professionals as the key agents of their care and the most trusted hosts of their personal health information. To take advantage of networked personal health information, both consumers and clinicians must be open to changes in their relationships, responsibilities, and workflows. The network-enabled efficiencies and safety improvements discussed in Opportunity Analysis in the Current Health Care Landscape are more likely to occur if consumers and health care professionals act as partners who share access to and responsibility for updating personal health information. The status quo—in which most personal health data are stored in silos controlled by providers, payers, and other entities—makes it more difficult for consumers to gather their data from multiple sources, more difficult to choose freely among providers, and thus more difficult to manage their health.
Designing a policy framework and architecture for networked PHRs does not guarantee that consumers or health professionals will widely adopt the technology. This paper does not attempt to overcome every barrier. Our intent here is to recommend a basic architectural approach for networked PHRs consistent with the goals of improving the consumer’s access to and confidentiality of personal health information.
Although a networked PHR would provide significant benefits to consumers, the exchange of health data over an electronic network poses serious concerns. Confidentiality of personal health information is a core American value.10 There is evidence that Americans support a network for health information exchange—if security and confidentiality safeguards are sufficient.11
Thus, before encouraging the ubiquitous networking of PHRs to other health information systems, we must establish a common understanding and an adequate set of shared rules. We need a technical approach that allows access controls to keep information flowing among people authorized to see it—and protected from unauthorized access or use. The selection and implementation of technical elements are themselves aids or obstacles to confidentiality and security.
Policy principles derived from shared American values must precede, and in fact determine, the design of the network. Consumer representatives must therefore be equal partners with other stakeholders in policy-making bodies. Consistent with the Markle Connecting for Health Common Framework model (see Background on the Common Framework Architecture), we propose that efforts to network PHRs with other information systems be guided by the following path:
This paper recommends a course toward developing networked PHRs. It covers the first five stages of the above diagram. Its purpose is to begin a discussion of the technical architecture and policies necessary to enable consumers to use personal health technologies to connect to their health data and services.