1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Luncheon: "Health Information, Support Groups and Self-Help Communities in Cyberspace"

Wednesday, April 16
12:00-1:15 PM

Tom Ferguson, M.D., Senior Associate, The Center for Clinical Computing, Harvard School of Medicine, Boston, MA

We are in the very early stages of providing health care information through technology. Stages of these technological revolutions are substitution, innovation, and transformation. I say we are in the early stage of the substitution in that we are doing the same things online that we were doing before.

Consumer health informatics involves:

1. community resources such as mailing lists, America Online, CompuServe, and USENET;
2. clinic resources such as doctor/patient e-mail and hospital and HMO web sites.

The benefits of online services are less emergency room visits, less physician visits, and greater negotiation of doctors with skills.

There are also the natural helpers -- the people who are the answers to the question, "Who do you know around here that people go to for advice?" There are natural helpers online. So the question asked was, "How can you work with them?" They are not professionals; they are mothers, or recovering alcoholics, or laypersons. Self-helpers must give encouragement so all types of laypeople will be encouraged to help. All types of health professionals are available to help the layperson.

The perceived value of various kinds of online information, from most helpful to least helpful:

1. responds to questions;
2. answers other self-helpers' questions;
3. provides results of our own searches;
4. offers shovelware, which is a term for software that is not very good.

The layperson considers shovelware as one-way, top-down, which does not answer questions or specific concerns.

I was asked the question, "Is there bad medical information on the Internet?" Yes. This problem can be improved on through understanding different cultures; knowing the self-correcting procedures; and being aware of brand-name opportunities.

There are online surprises. A few of them are that doctors traditionally serve as consultants; the best self-helpers are often ill; there are cross-platform links; and there is size unpredictability, which pertains to the amount of information on a health-related topic, like physical health care or mental health care concerns.

For example, these are online depression resources: Shrink Link; Professional Data; Self-helpers' Site Page Resource; Panic-Anxiety Resource; Bipolar Planet Resource; and Prozac Survivors Support Group. We are bringing patients into self-help groups to ensure that they get the needed support.

Five kinds of off-the-shelf consumer health systems are:

1. home health workstation;
2. decision support video, dealing with issues such as making surgical decisions;
3. bundled home-HMO;
4. therapeutic learning program, behavioral health in a cost-effective way;
5. problem knowledge coupler, which is available in a web-enabled format.

In a clinic, there is a reluctance to communicate how one really feels. E-mail is a good means of online communication in doctor-patient relationships. It is effective with established relationships.The demand for doctor-patient e-mail is high. This technology creates an automatic record; is convenient for transmitting information; and is a great strength in providing feedback on things that fall into the cracks. Security issues are enhanced and helped.

Where are we going from here? We are creating information health care systems that place the patient in the center -- systems that help doctors by providing a resource so that they do not have to store everything in their heads. The systems help create informative resources to involve all levels of health professions and facilitate clinical involvement of patients and consumers.

Solutions to the current health care crisis are to provide health care resources; computers connected to network by professionals and nonprofessionals; online communication; and a means to bring together people and to speak about networking.

Invention is the mother of necessity. It is not the same old health care put online; that is a challenge that we are facing. We will have to develop a new online, friendly, and capable network. Please stay in touch, whether by e-mail or other means.

Question: If you, as a doctor, give an answer to someone's e-mail who is in North Carolina, can you be held responsible for practicing in North Carolina without a license?

Ferguson: If you position yourself as an online reference person, you are probably okay. Make sure you provide information and not advice, and give good resources. Then you will keep out of trouble. Also, consult a lawyer before proceeding further.

Question: E-mail can flood doctors with minor issues. Can this be helped?

Ferguson: Not being familiar with the technology can create this problem. I am now in the process of getting a focus group together to set guidelines for doctor/patient e-mail, which will help greatly.

Question: As more people come online with its growth, will "more" actually become "less" in terms of information provided?

Ferguson: That's possible to probable.

Question: Do you see in the near future the use of voice e-mail in providing health care information?

Ferguson: Yes, that is not too far up the pike. It should happen in about 2 to 3 years.

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