P9

Section 1: Introduction

Rapid Consumer Adoption of Transformative Technologies

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:

• Communications: E-mail is now an indispensable tool of communication for hundreds of millions of people worldwide. Instant messaging and Voice over Internet Protocol (VoIP), such as skype.com, are increasingly accepted alternatives to traditional telephones.
• Search: The indexing of online information places enormous research power in the hands of individuals. People now “Google” or “MapQuest” without thinking of picking up a phone book or going to a library. Search engines are exposing ever more granular information, such as full-text searches of vast libraries of books, or the estimated value of your home, or the presence of a registered sex offender next door. Collective contributions by customers add value to search engine results, as demonstrated by the niche “layers” that individuals can add to Google maps.
• E-commerce: Web sites such as Amazon, eBay, and Craigslist create ever-expanding communities of buyers and sellers, which in turn create ever-expanding content, inventory, and transactions. Opening up online access to previously proprietary networks, such as real estate listings and flight schedules, has precipitated dramatic new conveniences for consumers and efficiencies for industry.
• Personal finance: Consumers embrace ATMs, debit cards, personal finance and tax software, and online banking and investment brokerage services. Such online transactions and self-management tools replace mail, phone, and retail encounters with financial institutions.
• Entertainment: The explosive popularity of Apple Computer’s iPod represents a progression toward individual manipulation and portability of entertainment media and other data. No longer passive consumers of radio program director decisions, individuals increasingly create and share their own “playlists” and “podcasts.” In another example, fantasy sports create networks of enthusiasts more deeply engaged than mere spectators of events.
• Content: Perhaps the most interesting techno-social trend is how newly networked consumers generate whole new bodies of content. Bloggers, who use software that makes it easy to self-publish on the web, are directly challenging political and journalistic institutions, among others. People are now pouring their innermost thoughts and images into the worldwide digital stream through online communities, such as MySpace.com and YouTube.com. Wikipedia represents a related and equally powerful trend: online collaborative publishing that derives its authority through the self-regulating nature of open communities. MySpace and Wikipedia in particular illustrate a phenomenal expansiveness of online community content creation. By most accounts,^{1, 2} both have emerged in about 18 months to join the 20 most popular sites on the web. Wikipedia is now the most frequently visited reference site on the Internet.³

Consumer-Based Transformation Is Slower in Health Care

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.

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.).

‘Networked’ PHRs as Tools for Transformation

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.

Addressing Key Policy Concerns Will Be Core to the Transformation Process

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.