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TopA Brief History Of Information Therapy
How is medical advice different from information therapy? There is not really anything new with the idea of providing medical advice; it has been around since the very first doctor-patient encounter. Doctors and patients agree that that the most valuable of all medical services is the advice the doctor gives to the patient. Information therapy intensifies that value. With information therapy, the information that is shared with the patient is considered as important as any medical test, or treatment or drug, and hence needs to be considered as therapy. Health information is not just about care. Information is care.
The idea of information as therapy started to gain traction in the US in the nineties and into the new millennium. In the U.S., a medical librarian was one of the first to advocate for putting health information directly into the hands of patients. In 1992, Katherine Lindner, MLS, RN, wrote an editorial in JAMA in which she encouraged medical libraries to become accessible for use by patients and their families. “Every scrap of information leading patients in the direction of discovering more about their disease becomes ‘information therapy.’” (Lindner, 1992) Donna Mitchell, a medical informaticist, proposed a more formal definition: “the therapeutic provision of information to people for the amelioration of physical and mental health and wellbeing.” (Mitchell, 1994)
Independently, the same concept and term occurred to us at our small, independent, not-for-profit organization in Boise, Idaho, USA. Healthwise was founded in 1976 with a mission to “help people make better health decisions.” Through our self-care guides and our online consumer health information database, we were working to help create a better health care system by helping people make smart and informed health care decisions in partnership with their health care providers.
With the emergence and rapid spread of the World Wide Web in the mid-1990’s, hundreds of health information websites sprung up. It seemed for a time that the Internet could do the job of putting good information into the hands of patients. But the Internet proved that it could be a dangerous place for consumers seeking answers to their health questions. While some of the websites were very good, others offered “information” that was either erroneous or just plain dangerous. Understandably, physicians were skeptical about the utility of web-based information. They complained of patients showing up with files of information about their condition that they had downloaded and wanted to discuss. Doctors, not having the time within the appointment to check the veracity and source of the information, tended to dismiss their patients’ discoveries and, in doing so, furthered the doctor-patient divide.
We realized that the information would be more useful, and the patient included more fully, if the doctor prescribed it. So, in late 2001, we set out to write a book about the role of information in health care: Information Therapy: Prescribed Information as a Reimbursable Medical Service. (Kemper & Mettler, 2002) Our opening salvo was a public call for health care systems and health care professionals to consider evidence-based and decision-focused consumer health information delivered in the process of care (e.g., a doctor’s appointment or a message from a health plan) as “medicine” for their patients: