1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Closing Plenary: "Telehealth in the Year 2000"

Wednesday, April 16
3:30-5:00 PM

Moderator: Tom Kalil, Senior Director, National Economic Council, The White House, Washington, DC

Michael S. Brown, President, MSB Associates, Needham, MA and Author, Consumer Health and Medical Information on the Internet

David J. Lansky, Ph.D., President, Foundation for Accountability (FACCT), Portland, OR

Des Cummings, Jr., Ph.D., Executive Vice President, Florida Hospital (Partner with Walt Disney Company in "Celebration Health" Project), Orlando, FL

Catherine M. Crawford, Ph.D.,Associate National Information Center, Rockville, MD; Conference Program Chair

Catherine Crawford: Good afternoon. I'd like to welcome you to the final session. This conference has been about many things -- diversity of thinking about technological solutions, diversity in consumer health information applications, and diversity in partners and partnerships formed to develop a link between individuals and the community. Perhaps all this diversity works, because in our many ways of thinking and doing, we have come together to work toward one goal -- improving the health and well being of everyone in this country and around the world. The people on this panel are working for this improvement.

I am pleased to welcome our moderator. Tom Kalil is the Senior Director for the National Economic Council (NEC). It is an organization within the White House. Mr. Kalil is the U.S. National Coordinator for G7 pilot projects. He was responsible for organizing the Little Rock Economic Summit.

Kalil: Good afternoon. We're now at the point in the conference where everything has been said, but not everyone has said it. I hope you are all aware that this Administration is committed to harnessing information technologies and getting the maximum use out of them. It is not an exaggeration to call what is happening now a revolution. Scientists are working on fiber optic transmissions. Video games are more powerful than a supercomputer was in 1966; a memory chip can store millions of bits of information on a piece no bigger than your fingernail.

The technology is expanding at astounding rates every year. President Clinton noted that only very specialized physicists had heard of the web. Now, even Socks (the First Family's cat) has a home page. We must use this resource to create jobs; make Government more efficient and responsive; and improve the health care system in cost, quality, and range of choice. There are legal, regulatory, and cultural issues that we will have to address.

This session is about telehealth. It has been noted that telehealth is about much more than telemedicine. It is about data storage, software for shared decision making, and public health surveillance.

These are issues that must be addressed before people can come to rely on the information system we are talking about developing. But I think this conference has provided an important forum for advancing discussion on these issues. Vice President Gore and Secretary Shalala have both addressed this, and we have heard about healthfinder™ and a number of other exciting telehealth projects that were showcased in the telehealth theater today.

To cap things off, we have three expert panelists who will offer predictions on what will happen. We'll invite them back for the next conference, and they'll be able to demonstrate how correct they were.

Our first speaker is Michael Brown, the president and principal consultant for MSB Associates.

Brown: Hi. I'm Michael, and I'm a technocontrarian. Usually people come back with, "Hi Michael!" (Brown repeats and audience responds.) I need that love; my therapist thanks you.

If we look in my dictionary, the definition of a technocontrarian is:

1. one whose views of technology are not in conformity with what is usual or expected,
2. one whose views of technology must reflect actual market needs and conditions,
3. a consultant who has been there and done that -- see skeptic or realist.

When I was back in Tufts in the early 1980's, I put on a demonstration of some high-tech equipment that we had been working on. A very important man came in to view our project. You all probably know him, so I won't say his name. Let's just call him Dr. Smith. I talked to him about our project, and a glazed expression began to come over his face while I explained how it could be used in his classroom.

I asked him, "So, Dr. Smith, what do you think of this technology?" "It's all very nice, Michael," he said. "But could you remember to have someone put some blue chalk in the classroom for my lecture this afternoon?"

It's what I call the "technology blue chalk" theory. If we repeat the technology failures of the past, we won't address the needs of the consumer.

This report was published last September -- "The Preliminary Findings of the American Interactive Healthcare Professionals Survey." I'm going to use some of this report's data. Among the challenges we face is keeping up with the rapid change occurring in the relationship between consumers and media-delivered health information. Health news retrievers are different. They aren't Joe Smith. They're college grads. These are not the kinds of people we want to get our information to. They have unprecedented access. Second, judgments will have to be made about quality. Last, users must be comfortable with a personalized system and with having information pushed at them. Before I talk about the next challenge, I wanted to say that a top priority among people was to be able to get information from their own physician on the Internet -- 57 percent wanted that.

We know from our research that the educational relationship between consumers and physicians is changing. Physicians are skeptical of reams of printouts from the Internet -- something they learned in med school, I guess. They also want to be the sole source of patients' information, but physicians do not want to give their patients their e-mail address.

Now take a look at this finding. We asked doctors what their ideal system was. They told us their ideal system provides a connection to other doctors, but they didn't mention patients. Among the problems relating to new technology that they listed is that they had no time to study it and didn’t like technology stuffed down their throats. Finally, technology is a pressure relief valve. Here's what we found when we talked to executives. They have real concerns that physicians are resistant to new systems.

The packaging of consumer health information is changing, with live chat rooms, different languages, and a host of other options. There are a lot of tools and modalities on line.

Who pays? The answer is the Government, various nonprofit groups, private interests, and other sources.

Key factors that will contribute to the big shakeout are the inability to deliver benefits or outcomes and a failure to rise above competitive noise. When you have a site that's out there competing for attention, you have a lot of noise to rise above. There is also the inappropriate use of technology. If you can't offer something different, don't get on. There's a lot of inappropriate use out there. We should be careful to broaden all the technologies, not just the Internet. The final factor is that there is a lack of planning and an inability to execute a plan.

I'd like to offer 10 planning paradigms before implementation -- thorough planning is the key to successful implementation of communications technology for distribution of consumer health information.

Here are the 10 paradigms, and I'll read through them quickly:

1. appropriate technology is selected to support the organization's goals;
2. at least one or preferably more goals is being met;
3. each application meets the needs of the planned audience;
4. each application is configured and positioned according to maximum output;
5. the planning process is top-down driven but has to have cross-discipline input;
6. each application must deliver quantifiable benefits that can be measured;
7. each application includes support for users;
8. each application is supported by the continuous benefits-oriented marketing concerns;
9. each application includes continual review;
10. if there is a significant change, the policy should be revised and reviewed.

So, what do you do to avoid deja vu? Become a technocontrarian; apply the blue chalk principle; use the 10 paradigms; and don't forget to set your clocks when the year 2000 hits.

Kalil: Our next speaker is David Lansky, President of the Foundation for Accountability.

Lansky: I do want to touch on introductory comments made. Clearly the goal is improving the health of the people in our community.

Hopefully we will have tools that benefit public health. My own techno-agnostiscm comes from working around the edges of technology all my life, being in the retrieving mode, and wondering what the benefits were. What's the hook? I look at society as a whole, and I see enormous gaps. These don't seem to be rectified by the tremendous strides in technology. I'm looking for an angle.

The hook is the process of health care reform. In the Foundation for Accountability, what we have not had is a clear, cogent picture of what health reform is. The health care environment is creating anxiety. People are anxious. You see this in the volume of sales whenever an article comes out about a new health care study. You see it in the attitude in state houses and Congress. There is something going on.

Consumers don't have a great deal of choice. Only half of the employed get to choose from more than one plan. Providers feel pinched. People don't trust HMOs, doctors, the Government, or anyone else. More broadly than that, the lack of collective agreement is more and more obvious. People become less and less sensitive as they experience "drive-through" mastectomies and other quick fixes.

There is a great list of capabilities and services being enhanced by the new technology. Before we developed our strategy for creating a viable system, we spoke to three groups. They were public purchasers of health care, private purchasers, and interest groups. We asked, "What's the vision?" "How do we change?"

These are the actions that they felt should be taken: They wanted financially based strategy. They wanted to rely on the market (consumers should be the agent of change). They would like it to be organized and would like a rational allocation of resources. They also would like personal care to be superior, but would like care to people outside of the mainframe to be enhanced. Individual consumers must have choice and control.

The vision that emerges is that consumers have to be at the center of the reform process. They have to get behind the effort with money, moral support, and votes. The health system has to find a way to listen to people. How do we match professionals' cares and needs to consumers' cares and needs? Information is the key, not financial or political solutions. Therein lies the opportunity. If someone could focus on this task.

There are at least three tasks to integrate throughout these needs. What ties all of your work together is that the active integrating has to happen at all three levels -- you have to start talking the same language (information), infrastructure, and incentives. People have to be rewarded for the ways they use information.

There has to be a transition from paternalism to partnership. And the present doctor-patient model does not work. That model has to change and has to support dialogue and partnership. The other models are between employee and employers and the Government and citizen. If 250 million do what's best for them as individuals, and not what's for the good as a whole, there's going to be trouble. Citizens have to act responsibly to avoid federal regulations.

Here is an example with asthma information. For quality asthma care, the content on the web is the same content you'd find in a clinical guideline. There should be some communication among many sources on what people should expect for good asthma care. It's important that the messages be consistent.

Another point is that the way we talk about quality health care has to be more unified. Sixty five percent of people on Medicare don't know what a health plan is.

Finally, we have to find a very simple, very unacademic way to talk about it. We have to find simple symbols we can use to explain it. In our culture as a whole, nonretrievers have to be aware of what we're doing. Use simple words, such as staying healthy, getting well, living with illness, and changing needs.

In a nutshell, the critical incentive is the desire of the purchasers to create a private sector health system driven by information. It must be commonly understood and protective of the common good of the people, with a larger goal of creating a better system.

Kalil: Our final speaker for the day is Des Cummings, Jr. He is the Executive Vice President of Florida Hospital.

Cummings:

Today, I am going to talk about a dream born in 1963 by Walt Disney himself. To give you a feel for what Celebration is all about in Orlando, I'd like to have you all look at this short video clip.

[A video plays for about 5 minutes, featuring news bits, promotional pieces, and feature stories about Disney's new project town of Celebration City located in Orlando, FL. The city's health system is a partnership with Florida Hospital.]

There are 1,000 people living there. By the time we open, there will be about 2,000 people living in Celebration.

A few years ago, we got 15 health futurists from around the world, brought them down to Orlando for a few days, and had them describe what they believed would be the health care of the 21^st Century. After surveying them, we found the one priority voted as the most important. It was that we must be concerned with treating the whole person. Health care has been so fragmented -- the whole person must be treated for their whole life in a whole community.

When the group at Disney first started planning this city, they realized that EPCOT was not a world city; it was sort of a World's Fair. They wanted to build a living, working community, and Celebration took care of that. The new community will give context for the future.

They took a sociological study of the community and found that the time period of 1930 to 1940 was felt to be the last era of community. People lived on their front porches, and streets were not for automobiles. In those days, we put out our garbage and parked our cars in back. Now we put them in front. It is the cocooning of our society, and you objectify those values.

We also had our group look at the role of technology. They came up with a statement to describe how and why they use technology "It is for the purpose of creating a relationship." Photos are the history of moments in which we had intense relationships. If you take the maintenance issues away, people have the opportunity to have fun. Technology facilitates the continuance of relationships.

At Florida Hospital, we want to create an environment where we can develop a system of health care that is understandable and part of the whole picture. We have affiliated ourselves with the Orlando Magic (athletes are the epitome of health) and Disney (Celebration is the culmination of a whole community).

We have not sized our health care system for just Celebration, but for a large community of 20,000 people. When people move in they get a computer, fax machine, cellular phone, and copier. We hope to see an online opportunity to communicate. Our partner is GE, and they will have a world showcase of radiology there. We have engaged our partner, Sprint, with a fiber optic connection on all our campuses. We have now connected 19,000 physicians.

I laughed a little earlier about what Michael said about physicians protecting themselves. I thought that physicians have protected themselves quite nicely with a nurse to interface with the patient.

We interface by fax, phone, Internet, and we use Ask-a-Nurse and Health-Magic. Within that suite of services we provide all these services. On the far side, we have connected our own claims system. Seventy seven percent of people choose to have less done when they show up for treatment.

We're seeking full integration, but we're not there yet. We process claims through the IMS system. In the physician's office, we operate through fax, telephone, and medicom. If we go out to providers, we are able to track through disease management, and we are able to track lab reports and patient reports. We figured out in the long term how to integrate. I don't have time to go through technologies available.

We believe in the whole person, and our mission is the creation of health. We believe you can see it in the icon of our building. When the folks at Disney created the statue outside our door, they asked us to choose the symbol of health. We thought the statue of the healthiest environment is embedded in the word "creation."

• C - people taking Charge of their own health.
• R - Rest ... if you are the average American, you are experiencing 60 to 90 minutes less rest than you need.
• E - Environment … recognizing the most natural environment is the best.
• A - Activity … activity is the best thing, whether physical or mental.
• T- Total health, of mind, body, and spirit.
• I - Interpersonal relationships ...they say people who have less than seven friends left lose the will to live.
• O - Outlook ... a good outlook on life is essential.
• N - Nutrition.

It's not a theory for us; it's a huge bet for Walt Disney. We believe, not in the isolation of people, but in the unification of people.

Audience: Do you know the median income and education of the group at Celebration?

Cummings: I don't have a figure, and if I did, they wouldn't let me tell it. Let me just say there's enough to stretch your opportunity for investment.

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