P9

Section 3: Opportunity Analysis in the Current Health Care Landscape

Entrenched problems in the American health care system are well-documented. Among the oft-cited deficiencies:

• Fragmentation that leads to inefficiency and duplication of efforts and costs.^{16, 17}
• Disappointing levels of safety and quality that lead to high rates of medical errors.^{18, 19, 20}
• Frequent unavailability of vital information at point of care.²¹
• High costs that are growing at an unsustainable rate.^{22, 23}
• An overall lack of patient-centeredness.²⁴

Markle Connecting for Health focuses on how health information technology can help transform the industry to reduce these problems and enable new forms of personal health management. We contend that strategic acceleration of the following trends can catalyze the long-awaited transformation:

1. Widespread use of digital data systems. If health information remains paper-based, little can be done to leverage data to improve health research, quality, and outcomes.
2. Adoption of EHRs. Clinicians need to use EHRs so that the clinical data they generate can be captured for sharing, coordinating care, and quality assessment.
3. Interoperability of EHRs. Only a minority of clinicians use EHRs today, and most of these EHR users have implemented proprietary systems that are not interoperable with other systems.
4. Proliferation of PHRs. Consumers are a logical point of aggregation for copies of their own health information. PHRs can be essential tools to make the task easier and place individuals at the center of their care.
5. Distribution of technology to the patient and family. Other technologies, such as health monitoring devices, can add the home as a key collection point for important personal health data. Such monitoring opens possibilities for more collaborative care and early intervention when monitored values reach certain thresholds.
6. Reallocation of roles, responsibilities, and money to the patient and family. PHRs and other new technologies must support a shift from episodic and acute care toward continuous healing relationships between patients and families and the health care professionals who serve them, as envisioned by the Institute of Medicine’s landmark report Crossing the Quality Chasm.²⁵ Consumers, aided by new technologies, can assume added responsibility for self-care, personal health management, and care-giving. A shift in financial incentives to reward clinical follow-up, outcomes, and quality is a key part of this trend, since current rewards favor fragmented and episodic care. The goal is to reinforce the benefits of improved collaborative relationships among consumers, their families, and their trusted health professionals.

We do not view the above trends as perfectly sequential steps of transformation, each one dependent on one prior. Instead, we view them as concurrent processes that will reinforce each other. In evaluating the highest leverage approach to take over the coming years, we offer a best guess assessment of how far along the United States is likely to be in advancing each of these trends by 2008.

1. Widespread use of digital data systems by 2008:
   • Nationwide, more than 90 percent of pharmacy claims transactions will be computerized and increasingly available through national clearinghouses, consistent with the National Council for Prescription Drug Programs’ (NCPDP) coding.
   • As many as half of all laboratory results available electronically will be using Logical Observation Identifiers Names and Codes (LOINC) standards (although it is not as clear how much of the lab information will be available through distributed networks or whether most end-user applications will be ready to receive the data).
   • More than 95 percent of clinical claims will be in electronic format.
2. Adoption of EHRs by 2008:
   • Only one-third or fewer hospitals and health care practices will have an EHR installed.
3. Interoperability of EHRs by 2008:
   • Most EHR installations will continue to be based on proprietary software that is largely non-interoperable.
   • No more than ten percent of the public will live in communities where health information can be exchanged among interoperable EHRs.
   • Incentives for interoperability will remain very modest.
4. Proliferation of PHRs by 2008:
   • Several of the current barriers to PHR adoption (such as concerns about privacy and security, lack of consumer awareness, lack of brand, lack of a sustainable business model) will likely remain in place and limit growth.
   • The continuing stream of news reports about privacy breaches of electronic data in several sectors, including health care, may affect consumer demand for PHRs and even create backlash against EHRs.
5. Distribution of technology to the patient and family by 2008:
   • Control over technology and information will remain in the hands of health care organizations.
   • Public reporting efforts and information support for health care transparency and quality will be very modest.
   • Few incentives will be in place to entice consumers to adopt technology and to take a more active role in their care.
6. Reallocation of roles, responsibilities, and money by 2008:
   • Higher co-pays and health savings accounts (HSAs) have been promoted in part to shift greater responsibility for health care decision-making to the consumer. Additionally, there are government, payer, and employer initiatives to “pay-for-performance.” However, we predict that these efforts will have little effect on the underlying roles, responsibilities, and financial flows of the health care system as a whole by 2008.

Given the low expectations for EHR penetration and interoperability, health care transformation strategies that rely on EHRs and clinician-based health data sharing networks are not likely to yield substantial near-term impact. We recognize the importance of EHRs and the high value of their integration with PHRs. We support efforts to increase EHR adoption and interoperability. However, we contend that it would be a strategic mistake to wait for full fruition of trends 2 and 3 in order to achieve increased consumer participation through trends 4 and 5.

Rapid consumer adoption of newly networked services has proven to be possible—indeed phenomenal—in other sectors. Consumers can adapt to technology and culture transformation more rapidly than large health care institutions with long histories of business processes and legacy systems. Furthermore, even as the majority of clinicians continue to keep consumers’ data on paper, other important personal health information—namely claims, pharmacy, diagnostic images, and lab data—are available in digital form today. We conclude that the immediate effort to catalyze health care transformation must include a strategy to create a networked environment for PHRs and related technologies that takes advantage of these currently available digital data streams. Providers can gradually form and join networks as their systems increasingly interoperate. In fact, networked connections to PHRs could help accelerate the EHR adoption curve as clinicians see advantages to joining the network.

There are additional strong rationales for involving consumers in a much-needed transformation toward greater information access and transparency. First, the health care consumer has the largest stake in the contents of such information. The consumer’s life is put at risk when preventable errors occur due to lack of information. Second, the consumer is the ultimate payer of health care services. Consumers are being asked to pay directly for a larger proportion of their care.^{26, 27} Third, younger generations expect to use technology in almost all aspects of their lives. Fourth, as the number and complexity of diagnostic and treatment modalities grows at a rapid pace, patients are increasingly required to share the responsibility of decision-making with their health care providers. Furthermore, patients are often in the best position to gather and share information with providers.^{28, 29} For example, a physician might know that a medication has been prescribed for a patient. But without asking the patient, the doctor does not know whether the patient actually took the medication, how well it worked, what other remedies she is taking, or whether she had side effects.

Empowering health care consumers by placing information directly in their hands has the potential to radically improve health care.^{30, 31} PHRs are still in the early development stages, and a great deal of study is needed to measure the benefits and risks of PHRs. Consumers, patients, and their families vary widely in the responsibilities they each wish to maintain in their own health. However, as noted in Markle Connecting for Health's 2004 report, Connecting Americans to Their Health Care, preliminary evidence suggests that PHRs have potential to:

• Empower patients and their families.^{32, 33, 34, 35, 36, 37, 38, 39}
• Improve the patient-clinician relationship.^{40, 41, 42, 43, 44}
• Increase patient safety.^{45, 46, 47, 48}
• Improve the quality of care.^{49, 50, 51, 52, 53}
• Improve efficiency and convenience.^{54, 55, 56, 57, 58, 59}
• Improve privacy safeguards.^{60, 61}
• Save money.^{62, 63, 64, 65, 66, 67, 68}

Lastly, there is general agreement among many stakeholders, including those listed below, that PHRs should be a key part of health care modernization and reform efforts:

• Government bodies, like the National Committee on Vital and Health Statistics⁶⁹ and the American Health Information Community.⁷⁰
• Professional societies, such as the American Medical Association⁷¹ and the American Health Information Management Association.⁷²
• Consumer groups, such as AARP and the American Diabetes Association.⁷³
• Health insurance plan associations, like America's Health Insurance Plans and the Blue Cross Blue Shield Association. ⁷⁴
• Bipartisan political leaders. ⁷⁵

Stakeholders do not share a consensus view on how to stimulate PHRs (or even what PHRs should ultimately be). We do not know what kinds of applications and functions will be most effective in encouraging the transformation we seek. The mere presentation of health data to consumers is unlikely to be transformative. Applications likely will have to interpret and apply the data in innovative ways that provide specific benefit to specific people, and connect them with their health team and caregivers. Although the next sections of this paper recommend a framework for enabling networked PHRs, we purposely avoid recommendations on what those applications should be or do. Development of a sufficiently flexible network will enable the use of a great variety of personal health technology applications, including many that we cannot imagine today.