1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Plenary Response Panel 2: "Redefining Roles of Consumers and Patients"

Tuesday, April 15
11:15-12:15 PM

Moderator: Molly Mettler, Senior Vice President, Healthwise Communities Project, Boise, ID

Respondents: James S. Gordon, M.D., Director, Center for Mind-Body Medicine, Washington, DC

Samantha Scolamiero, Brain Tumor Mail List

E. Loren Buhle, Jr., Ph.D., Associate Director of Information Management, SmithKline Beecham; Creator of OncoLink

Mettler: These are great days to be a consumer of health care, but I want to give you a brief message about medicine.

In the year 2000 BC, a consumer went to a healer who would say, "Eat this root." The consumer would say, "I have an ear ache," and the healer would say, "Prayer is the answer." The healer would tell the consumer that "The potion is snake oil. Take this pill." Whether the cure is pills, prayer, or root is determined by where we sit. And the consumer is the primary care provider who makes the final decision.

This session is entitled "Redefining the Roles of Consumers and Patients. "Consumers are ready to reclaim their roles as health care providers. A consumer health care course should be a requirement for people entering the heath care field. Certainly the technologies are new.

Over the next millennium, technology will be changing. What we are witnessing now is that we are driving a major change in the culture.

Scolamiero: Good morning. It is an honor to be here. I only have a short time to share with you. I am only going to be able to give you a few pieces of the puzzle. I am going to try and show you those pieces by illustration.

In 1990, I was just plain Samantha. I started looking for support. One group did accept me, but it was located too far away. What I really wanted was to talk to other brain tumor patients.

I then jumped into cyberspace. I was transformed into "brain woman." She is able to help patients in need. I do not have to be a brain tumor victim, but I can be brain woman. But not everyone wants to be a super hero.

How are other people's roles changing? The patients are becoming teachers. Over 100 messages a day fly back and forth on the Internet. Here is a reaction from a physician. The brain tumor list is creating an awareness among physicians about the specific physical, emotional, and spiritual needs of patients. The patients are even helping those doctors who are willing to learn.

The term "patient information" is likely to come up many times during this conference. Maybe we can redefine that term.

I was so frustrated because I wanted to educate a leader about a major brain tumor operation. He said that I could not educate. I began to understand that you can only act and show. Reed Tuckson said that you have the opportunity to use some power. Use your power to act, show, and touch.

We must do away with the traditional idea of patient information. We must find a new way. The Technology Theater is a wonderful place to act and show. You can access a database with candid information. It's people talking with other people. I went through my brain tumor ordeal when the web did not exist, and so I was not able to take advantage of this type of support.

My neurosurgeon did not do a mohawk. They went into my brain and kicked the brain tumor's butt. The laptop is the steering wheel of his race car. The doctor on the top is amazed. The guy on the bottom is still not sure. And the other guys say that this is cool.

There are tons of helpful people when you have a support group formed and accessed via the web. There isn't time to tell you about all the online support self-help groups. But suffice it to say that the Internet and the brain tumor mailing list are making us more real and tangible.

I am here as the consumer voice. I do not want to be a patient. There are people at the bottom of the column here. If we want to help redefine health care, we need to make the tools available to everybody. Access to technology is going to be a major factor. We have to be on the same level. Let's act, show, and touch when we teach people how to do it.

Buhle: The reason I included my pedigree was to show that in many ways I started my career in basic science. After leaving Hopkins, I took another position and had a great career. I was writing grants diligently. In 1989, my daughter was diagnosed with leukemia. I became a health care consumer. Then my mother came to me and told me that she had 3 weeks to live. I spoke with my doctor, and he said, "I am sorry." It took 4 years of chemotherapy.

After a period of dealing with these circumstances and gathering information, a period in which I'd take about 40 messages a day, I said, "Let me put this information into a database." Then we decided to give it a name, OncoLink. It took off. It was a labor of love. We gave new meaning to the term, "time lapse." It just took off.

My first conference was called the World Wide Web. At that time you could not just go to Erol's and get an account. There were office support groups starting.

After I came back from a meeting, they said that this was a bad idea, and the database was turned off for 22 hours. It came back on because of the flood of outcry to get it back on. I was told that my academic career was over. I said, "If this is what being an academic means, I don't want a career." I told my daughter that I needed help.

If you are to exist in a community, you must get involved. We learn a lot from our patients, and we learn from each other. It is a give and take situation. I left the university in 1995. I felt that this was not a place that I could give back to. There is no financing behind this. This is all volunteer.

So what is the lesson? Am I going to go to a newspaper and put it all out? The web pages are great. The library is handy to have, but the key is the one-to-one interaction. I as a patient want to work in partnership with others involved in my health care. Who is in charge of my health care? What is it that I really want to do?

Cancer changes your life forever. My daughter is now 11 years old and it has changed her. I would like to think that we can all learn. I learned when I did some clinical work. Why can't we put this stuff on the web? Let's bring it back to life. I think that this is the key to our quality of life.

We are now in an era when people grew up with Watergate. They want to know the quality of information on the Internet -- they want to know they can trust the information. They should ask around. Maybe the physician does not have the answer. Be very careful who you call awful or bad. But the key message I want to get to you today is that we are all consumers. Thank you very much.

Gordon: Thank you Molly. I am very moved to hear both Sam and Loren. This is what my work and our work is about. It is about working in partnership and together creating a whole other vision and another sense of what it is to be human.

My ancestors were qualified to be healers, and they had a calling. The calling came from within. It came from experience with life-changing illness. It was certified by someone seeing them. Maybe now you will have the wisdom and the knowledge to be a healer. Maybe this will enable you to use all of the tricks. Sam and Loren are healers. We are all patients, and we are all consumers.

For me, the process of becoming a healer was one that evolved from my own suffering. I gave a speech and said my first illness was my first year in medical school.

I would like to make a few points about what I see happening in health care. I have a private practice in DC where I work with people who are not well. I teach at George Washington University Medical School. My mission is to transform health care in this country. We need to help people to realize what power they have to help themselves and others.

The notion of a healing partnership is that compliance is an ugly word. All of the work that we do has to be grounded in a healthier partnership. I think that we are going to hand out some information about the Center [for Mind-Body Medicine].

What I have observed is that consumers are all perfectly capable of handling themselves to a certain degree. But they need to understand the abstract. As far as health care being primary care, we teach it to professionals. I just had a class on the physical process of healing. They have to have the experience first. If you have the experience, you have the authority. The authority comes with having dealt with one's own illness. If you have that within yourself, first of all, you know it is possible. What our work is doing is changing the roles of physicians -- teaching them that they can teach other people. It is better if you do things with people instead of doing things for people. That is the true learning.

We have also used the power of group support. We work a lot with small groups. The people who are in the group after 6 months said they had enhanced their life span. The other families called on them when something was life threatening. They would bring together the whole family and the town. They were lending support and energy to each other.

We are in the middle of a revolution. In my book I call it "the new medicine." But what this is about is that people are going to like this forthcoming change.

The reason is that users and potential users are not getting the help they need. About 45 percent of the population is now accessing this [online service to obtain health information]. For people with cancer, it is about 95 percent. They are looking to maximize a healing partnership. Thank you very much.

Question: What would it take for some of these things to be eligible for third-party payment?

Answer: We do take third-party payment. When I bill for an office visit I don't have to bill for medicine, but rather I bill for what I can do to make my patients feel better. The first thing that it is going to take is for people to demand that online support be covered. Patients have to assert that it is not acceptable for a needed service to not be covered. And doctors have to refuse to work where the service is not covered. Research is second. Third is political organizing. People who are in power are just like us -- they know what they are getting and not getting.

Buhle: A lot of people use managed care. A lot of insurance agencies have supported managed care not only for preventive care but actually for performance. The number one issue is that we need to save money.

Gordon: It is most important that people go to their doctors, tell them what they want, and get them to act on their choices.

Scolamiero: A lot of what we are talking about is done by volunteers. We need help with funding for these things.

Question: How far out on a limb are you going? Would you say that most diseases are mentally based?

Gordon: The idea is that everything that happens to the body starts with what happens in the mind. Why have someone taking medicine? Providers should always work with someone mentally. We now have more people leading these support groups because people know that this is part of their healing.

Question: I've seen this argument over and over. Now we treat the patient. What is the answer to managed care, and how can you treat somebody holistically in 10 minutes?

Gordon: You can't. The first thing you do is say, "No. I am not going to participate in a system that is wrong." I think what you do is create other models. Dean Ornish's research is great because you find something that costs less -- just by working with them and taking another perspective.

Mettler: These people are brilliant. Where is the firewall between consumers and what they have to share, and should there be a firewall? How concerned do consumers need to be? When is the medical profession going to catch up to consumers? Will things begin to bite back? Just questions to ask ourselves throughout this conference.

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