Don Kemper, CEO of Healthwise, calls on us to continue the debate that he & Tom began many years ago with a post about his “Three Simple Rules”:

The Self-Care Rule: Help people do as much for themselves as they possibly can.

The Guidelines Rule: Help people ask for the care they need.

The Veto Rule: Help people say “no” to care they don’t need.

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I mailed Don Kemper of Healthwise a copy of the e-patients paper and he wrote back a lovely remembrance of Tom and a call for debate:
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Thank you. I’ve just finished reading e-patients and I’m filled with loving memories of Tom and with great appreciation for the work of the team of Tom’s friends who pulled the book into life even after Tom was gone.

I first met Tom at a “Regional Self-Care Workshop” in Sun Valley, Idaho, back in 1976. Tom was a young, energetic physician/writer with an aura of both gentleness and wisdom even then. He came fresh with exceptional ideas about helping people do more for their own health care and full of stories about how even six graders could effectively use medical information to improve their care. Through the years, our friendship and our shared passion for empowering everyday people to do more to control their own health care kept us floating in and out of each others efforts on a periodic basis.

I’ve recently re-listened to some old tapes of Tom as the moderator of the first consumer health informatics conference presented in conjunction with the National Wellness Conference in 1993. Healthwise had co-sponsored the conference with Tom in an effort to infect others with ideas about self-care, natural helpers and empowering people to play a larger role in healthcare—and the idea that the new Internet will help that happen so much faster and better.

I believe that was the first conference at which we unveiled our vision for and early start on the Healthwise Knowledgebase. We had talked about it as a “hundred year project” of gradually pulling together and keeping up-to-date information on every health problem, organizing it around decisions that patients face and translating it into terms that the average person can understand. It was a time, exceptionally filled with excitement and opportunity.

Through the years since then Tom focused more and more on the self-helper networks and Healthwise became more and more absorbed with adding to and improving the Healthwise Knowledgebase. When in 2002 we came out with our bold new concept of “information therapy” I was sure that Tom would love the idea of doctors or health plans prescribing information to consumers. He didn’t. He was concerned that the prescribed information from clinicians would undermine the patient’s right or ability to search for information from other self-helpers.

I had always assumed that I would win Tom over in the end. I felt confident that the two approaches were totally compatible. I had heard too many stories from common people about how getting decision-support information from our books or Websites let them to better decisions and helped to engage them in self-help groups and other efforts. In the past twelve months there were over 100 million user sessions with our Web-based and book-based information. In perhaps half of the cases the information accessed included information about connecting with self-help groups. Ed Madara’s American Self-Help Clearinghouse has been part of our Knowledgebase offering for at least the last ten years. It also helps to connect people with support groups tracked by the National Organizations for Rare Disorders (NORD). I suspect that a huge number of people are introduced to these self-help efforts through these links in our content. I was sure these arguments would show Tom the compatibility of the two approaches.

To be fair, perhaps Tom had always thought he would win me over to embrace his perspective that to be fully empowered people had to have information separate from their doctors, separate from the system and presented in the context of other patients. I think I am there—but then Tom might still not agree—for I still think that the self-help world will work better when the patient is also being prescribed information as a part of the process of care.

Three Simple Rules

I’ve recently published a short paper at Healthwise called “The Ix Solution”. The paper presents three simple rules that if implemented widely across the health care system could accomplish much of the goals that Tom and I held in common. I wonder what Tom would have thought of them.

The Self-Care Rule: Help people do as much for themselves as they possibly can.

We now have tools to help us to do what travel agents, investment counselors or research librarians used to do for us. We edit our own movies, we set up our own Websites and we have become our own disc jockeys . With the right self-care and self-management tools we can do so much more for ourselves.

The Guidelines Rule: Help people ask for the care they need.

What we learn from medical research is increasingly translated into care guidelines for physicians. Still, it takes years and often decades for physicians to adjust their practices to new guidelines. This rule gives the guidelines to the patient—in a plain language, unbiased form. Once they know the guidelines they can begin the conversation of what is the right care for them.

The Veto Rule: Help people say “no” to care they don’t need.

Too often people get caught up in a river of care without close attention to what is actually helpful for the patient. The veto rule reasserts the autonomy of the patient and lets them make informed decisions to stop or change treatments that are not right for them.

I would think that these rules are ones that the self-helper community would embrace. They would also go a long way toward providing relief for the triple crises of cost, quality and workforce shortage that are increasingly facing health care.

Bringing the two perspectives together

I would welcome some brainstorming on ideas that could bring together the insights and experience of self-helpers with our work at Healthwise. We are a not-for-profit organization. Any input would be valued.

Don