1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Plenary Session Keynote: "Networked Consumer Health Information: Redefining Roles in Health"

Tuesday, April 15
9:30-10:00 AM

Speaker: Molly J. Coye, M.D., M.P.H., Executive Vice President for Strategic Development, HealthDesk Corporation, Berkeley, CA

Good morning, and congratulations to the Department of Health and Human Services, Secretary Shalala, and Vice President Gore for helping consumers find their way to the information highway.

I visited healthfinder™ with my 9-year old son. He thought it was great, but not as great as www.espn.com. Being out on the web is something like drinking from a fire hose. We must learn to control that fire hose and turn it into a tap to provide good, clean drinking water for the general public.

There is no doubt that this information program and others like it have a certain degree of risk involved, but that risk is part of the territory, and we must accept the challenge to provide accurate material to the public.

There are many of you in the audience today who represent over a decade of work in pioneering this technology, and I would like to congratulate you. I remember, in the 1980's, carrying around an Osborne portable computer. Most of the men thought I was carrying a sewing machine.

Last June I joined HealthDesk, largely because I saw a need to assist in the distribution of accurate health care-related information. It has developed quite extensively as a means of bringing public health to the Internet.

Because of your help, systems like this one are poised to provide information to the consumer. Some developers are wading into the water, checking the temperature every step of the way, and others are diving right in. As we move into the next decade, networked consumer health information systems will change the face of health care, just as the baby boom generation and the economic incentive of managed care have recently forced it to change. This new technology will be the equivalent of a nuclear attack to change behavior.

I believe that networked information systems will transform the face of health care. They will help accelerate the transformation of health systems and assist in the creation of new types of health professionals. Doing so will generate powerful new consumer and patient knowledge, expectations, and capabilities. Most health professionals are unaware of the sea change that is coming.

Since I am from California, where we have experienced all seven biblical disasters over the last few years, I like to use powerful images in describing how these information systems will affect our communities. The juggernaut of managed care has hit like a freight train. And like the San Andreas fault, we will barely feel the tremors of the next generation of consumer networked information, especially when they are eclipsed by the rumblings of that freight train. However, they will be important to monitor nonetheless. And think of the Galapagos Islands, where Darwin's most startling discovery was not that evolution occurs, but that when it does it proceeds at such a rapid rate.

What physicians and other health care professionals need to be aware of are these three strategies: Discounted fee for service. Fragmented management of care (physicians may be capped, but most of the rest of health care is not). Virtual integration of delivery systems (economic incentives must become aligned across all health care services/providers for more appropriate administration of care).

These three strategies have been accelerated and impacted by the early development of networked health information systems. They will continue to accelerate, and excess provider capacity will continue to fuel the powerful need for information systems.

There is a need for capital to invest in the information systems. More than half of a provider's capital budget is spent on information systems. There are interoperability requirements of these virtual integrated systems.

There is a fourth strategy. It involves supporting patient self-management of care. This is not simply a substitution of labor. These systems have the power to transform the roles of patients and consumers. The patient becomes the care manager. This reorganization threatens the traditional roles of physicians and health care professionals.

The University of Manchester in England is establishing a People’s Medical School, which exemplifies this reorganization. Their recruitment brochure states that the time has come for a major conceptual shift in health care, from seeing the consumer as the recipient of health care, to seeing the consumer as the primary provider.

Ultimately, the consumer does, or does not, provide the care. You manage or are managed. You eat lunch, or you are lunch. This places physicians in a bind. Physicians are unable to treat a large portion of the patients who do venture into the formal system. Costs are too high and visits are too short.

Satisfaction has fallen, largely due to the lack of warmth a patient feels from the provider, the use of unfamiliar terms during treatment, and the lack of an explanation of the problem. There is little that can be done about this, short of personality transplants or expanding visit time. Physicians are feeling this pressure. Satisfaction ratings are a large part of their income. However, it is hard to change in any meaningful direction. The system does not provide for the physician to receive adequate feedback. Gathering information in the form of medical practice profiles is lacking.

When it comes to using these new interactive technologies, physicians' views of the Internet vary from ambivalence to active resistance. They fear the technology that they perceive as coming between them and their patients. They are concerned about managing their moral and legal responsibilities. There is no vision of the future shared by both physicians and patients. It is a scary process for both.

This leads us to take a look at the new developing roles. There are new tasks in health and disease management. We must inform and educate patients, families, and communities in order to monitor and track health issues. And we must provide for continued surveillance of quality of care.

The current system’s competence at tracking patients is abysmal. Failure to provide follow-up care is a problem with the system, as is the costly issue of patient noncompliance.

With the breakthrough technologies increasing the efficiency of home and online diagnostics, we can expect the replacement of some of the core functions of physicians. There will be new roles, such as the population analyst, who will identify useful segmentation (not all diabetics are the same), behavior to change, and expectations measurements. Another emerging role will be the community facilitator, who is a group leader and community model.

New consumer and patient expectations will emerge fueled by the passing of the baby boomers into their golden years. These demands for health care generated by this population have already transformed the application of Ob-Gyn care. The same will happen in management of chronic disease. Baby boomers have a powerful personal goal of maintaining their health and independence. They got empowered 20 years ago, but now they will not only be empowered, but they will be enlightened as well, because they will have information about the options and consequences of their decisions.

This change is already happening. Blue Cross did a survey, and 44 percent of respondents were willing to receive electronic information instead of face-to-face encounters. There are concerns that patients and physicians share about being online. The appropriateness of online advice. The confidentiality of information and transactions. The quality of information on the Internet -- does it meet Food and Drug Administration's "safe and effective" standards? The segmentation of groups of people -- those who have access and those who do not. Health care professionals have to seize by the horns the power to make these changes. This is a frightening process.

Jim Hightower, Texas railroad commissioner and great populist said, "The only things in the center of the road are yellow lines and dead armadillos." It is a daunting but exciting challenge, and it is happening despite the health care system by and large. With the exception of pioneers like Allina, this is happening between patients and a small coterie of professionals. If there was ever a time for the phrase of a "wake-up call," health care providers need it now. Thank you very much.

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