Healthcare is a topic fraught with sensitive issues, beginning with privacy, liability and growing costs, which then lead to equally controversial fixes such as HIPAA, malpractice insurance reforms and health savings accounts (HSAs). The lobbyists battle on the Hill, and Newt Gingrich preaches from his Center for Health Transformation, but everyone, including President Bush himself, seems to agree on one thing: The patient needs to be at the center of healthcare. As envisioned by the National Economic Council, “In an ideal system, Americans would be able to choose their healthcare based on their individual needs and preferences.”
Healthcare is a topic fraught with sensitive issues, beginning with privacy, liability and growing costs, which then lead to equally controversial fixes such as HIPAA, malpractice insurance reforms and health savings accounts (HSAs). The lobbyists battle on the Hill, and Newt Gingrich preaches from his Center for Health Transformation, but everyone, including President Bush himself, seems to agree on one thing: The patient needs to be at the center of healthcare. As envisioned by the National Economic Council, “In an ideal system, Americans would be able to choose their healthcare based on their individual needs and preferences.”
This is not a hard leap to make, especially if healthcare is defined as the care of one’s mental and physical condition, wellbeing and vigor through the prevention, treatment and management of illness. Who else but the patient can be in the center of that? However, in the struggle to control costs and attract profitable business, healthcare providers, payers and other stakeholders temporarily seem to have forgotten the central focus of healthcare, and its ultimate goal of creating wellness and reducing the number of patients.
Fortunately and finally, the pendulum has begun to swing back. Hospitals are investing not only in elegant consumer Web sites, but also in enterprise applications that deliver patient and physician portals for secure communication and exchange of clinical information. Using Internet-based connectivity and interoperable standards, healthcare organizations seek to eliminate paper, increase productivity, simplify workflow and improve business process. From that they hope to lower administrative and IT costs and reduce medical errors. All of this, packaged under the term “eHealth,” is intended to improve the health status of patients.
This is good stuff, especially if patients stay within a system. But when they begin to move around, choose a non-network physician or engage the competitive organization across town, the challenge of getting to the critical health information starts over. Even though the insurer may be willing to pay for duplicate assessments and tests, it is really not that much fun for the patient. One patient I met recently advised me to carry all my records in a cardbox box, as he did. “It’s one thing if it’s just another urine sample they want,” he explained. “In my case, I had to have two biopsies because one doctor wouldn’t accept the tests from the other. That didn’t feel too good.” Sure enough, in his box were manila envelopes holding his X-rays and copies of test results.
Bittersweet Price Tag
Enter the regional health information organization (RHIO) and electronic health records for all. The concept is great, and across the nation healthcare organizations, consultants and IT vendors are building collaboratives with the vision of an interoperable data system in which patient records can be seamlessly accessed and augmented across the healthcare continuum. The combined $156 billion price tag is bittersweet. While it provides suppliers with years of revenue, no one yet, including the government itself, is willing or able to foot the bill. Furthermore, while healthcare providers may be altruistic at heart, the patient data everyone talks about sharing ultimately represents a distinct competitive advantage.
In spite of high costs and intra-HCO (healthcare organization) competition, a handful of not-for-profit organizations have made some progress as demonstrated by the Western North Carolina Health Network (WNCHN). Funded by a $2.5 million grant secured by Congressman Charles Taylor, the WNCHN launched a 16-hospital RHIO in January 2006. Gary Bowers, its executive director, remarked, “We didn’t originally come together to exchange data, we were a buying cooperative. We discovered that by uniting our purchasing power, we all came out ahead. This spirit of mutual cooperation carried over into the sharing of our clinical data.”
To be effective at the patient level, RHIOs must go beyond the walls of the hospital and include the individual physician offices, labs and pharmacies to provide true ubiquitous access to patient data. The challenge of “who pays” and “why share” grows exponentially, as does the need for interoperability. The integration of data now requires that physicians have digitized patient records that can be accessed by systems outside of their offices.
Even if a practice has taken the expensive leap to convert those paper charts to electronic medical records, the hosting IT infrastructure has to make them available for access from outside the local area network. Convincing physicians that their practices must bear the costs of online accessibility and security so that other physicians can use their patients’ data is going to be a very hard sell.
Care Receivers Must be Involved
Finally, if we are going to create a truly patient-centric system to improve healthcare, we must involve our public and enable them to become contributors to their care. Patient empowerment will come with knowledge and involvement, and not until individuals understand their roles and choices in their own healthcare will they become decision-makers.
In addition to patients needing to access comprehensible information about their treatments, prescriptions and test results, they also are viable contributors of personal health information to their own records. Only they know which drugs, both over-the-counter and prescribed, they actually use and what home care they administer. In the nationwide RHIO initiatives, we are making efforts to “connect communities” so that the care providers have access to patient data, yet we are doing little to include the care receivers.
At the press conference for the WNCHN RHIO launch, I spoke with a consumer at the Haywood Regional Medical Center Fitness Center. “What’s up?” he asked, adding that he had noticed “a lot of brass around.” When I explained that the community was celebrating the launch of its RHIO and what that meant for clinical data, he was alarmed. “Nobody asked me if they could share my information,” he said.
System Disempowers Patients
The requirements of the technology-driven healthcare transformation grow. If the patient is truly going to be at the center of care, then issues of consent, patient access and patient education loom large. Within our current paradigm of healthcare, where payers manage risks, the threat of malpractice claims creates defensive medicine. Because patients have little or no choice in the drugs they are prescribed or the treatments that are administered, they are not true consumers. Patients do not have the information or the confidence to manage their own care, because the healthcare system is more disempowering than empowering. Making patients smarter and more involved healthcare consumers is not in anyone’s budget.
The process of patient empowerment, both from the President’s perspective of “promoting prevention, wellness, and fitness” and Newt Gingrich’s of “putting healthcare consumers in the driver’s seat” starts with training all Americans to be responsible managers of their own physical condition, wellbeing and quality of life. Beginning in elementary school and, hopefully at home, the consequences of risky lifestyles, poor nutrition and lack of physical activity must be taken as seriously as literacy. We shouldn’t launch a student into adult life without teaching her how to read any more than we should send her out into the world without instructing her how to be healthy.
A good example of public health education is the strides the U.S. made on defining the risks of smoking: Among Americans, smoking rates dropped by nearly half in three decades (from the mid-1960s to mid-1990s), falling to 23 percent of adults by 1997. In the developing world, where the dangers of smoking are not taught and tobacco advertising is unregulated, tobacco consumption is rising by 3.4 percent per year, according to the World Health Organization. Clearly, in this country where in the last 20 years the number of overweight children has more than doubled, and in 2002, 31 percent of Americans were classified as obese, the next public health campaign must revolve around the dangers of overeating and a sedentary lifestyle.
With knowledge comes power, and patient empowerment must be extended to physicians’ offices where providers are incentivized to educate their customers. The transfer of power from physician to patient requires not only limiting the physician’s liability, but also patients sharing responsibility and decision-making. Patients can be accountable only when they have enough information about the course of their care, can understand the implications of test results and know the facts behind medications. This concept, however, is counter-intuitive to the goals of increased productivity, and few payers currently reimburse caregivers for time spent building patient competency.
Patient empowerment will advance when consumers can choose how they spend their healthcare dollars. In addition to transparency in the pricing of healthcare services and products, rating systems on the quality of goods and performance of providers are essential for making buying decisions. Competitive pressure will result in a repositioning of the patient in the healthcare system. Those who wish to benefit from improving patient health will align themselves with the needs of the patients.
Consumers will choose services that make them feel better and live longer. They will go to providers that teach them how to be better patients and select health plans that encourage healthy lifestyles. Consumers will participate by using the tools—their online health records, patient education or quality assessments—to make decisions about their own healthcare.
