Could Clinical Decision Support Empower Patients?

1 7 Portals Powering Patient Engagement

7 Portals Powering Patient Engagement(click image for larger view and for slideshow)

Ideas long espoused by medical informatics pioneer Dr. Lawrence L. Weed but shunned or ignored by the medical establishment might find a perfect fit in a world of "participatory medicine," suggests a well-known proponent of patients taking an active role in their own care in concert with healthcare professionals.

As he explained this month at the Healthcare Information and Management Systems Society (HIMSS) conference in New Orleans and in a 2011 book he co-authored with son Lincoln, Weed believes in "coupling" medical knowledge to specific patient problems with the aid of computers. Any attempt to practice medicine based on a physician's knowledge alone invites diagnosis error, according to Weed.

That opinion struck a chord with Terry Graedon, co-editor-in-chief of the Journal of Participatory Medicine. "Recent research reports have shown that misdiagnosis is an Achilles heel for the current practice of medicine," Graedon wrote in a commentary published this week.

[ A study suggests patients don't like it when doctors use computers to diagnose them. ]

Indeed, the Journal of the American Medical Association's JAMA Internal Medicine just last month published a study showing that physicians missed a surprisingly high number of common diseases in ambulatory care. Although Graedon's article does not mention this study, it does raise similar themes.

Proper diagnosis, Graedon argued -- as Weed, creator of the problem-oriented medical record, has been doing for decades -- starts with a complete problem list. Then, a computer system couples problems to specific medical knowledge.

"If diagnosis begins with standardized data collection, doctors bring clinical judgment to bear at the final stage of diagnosis. Treatment should then be evidence-guided but individualized for the particular patient," Graedon wrote. "We trust that at this point the patient would make his or her preferences known and share in the decision," she added, bringing in the element of patient empowerment, because the Journal of Participatory Medicine is a publication of the Society of Participatory Medicine. Graedon, along with her husband, Joe, helped the late Dr. Tom Ferguson develop the idea of participatory medicine and patient empowerment that led to creation of the society after Ferguson's 2006 death.

"Diagnosis needs to be much more precise," Graedon told InformationWeek Healthcare.

That was one of the sentiments Weed expressed in New Orleans, although Weed is no fan of evidence-based medicine, which relies on statistical probabilities and thus is not precise enough for his tastes. "The patient isn't interested in what's probable. They're interested in what's wrong. And if it's highly improbable, they expect you to find it," the octogenarian Weed said at HIMSS13.

What Weed said both in his address to the HIMSS symposium on physician informatics and in Medicine in Denial, the book he co-wrote with his son two years ago, was that physicians need to put aside their egos and accept that they need better information from patients and computerized help in matching medical knowledge to known patient problems.

"The Weeds' vision of how the data would be collected and used is appealing from the perspective of participatory medicine," Graedon wrote in her editorial. "The patient would fill out a comprehensive standardized computerized questionnaire prior to a face-to-face clinical encounter. Some data that can only be derived from physical examination or laboratory tests might need to be provided by a clinician, perhaps a physician extender such as a nurse or physician's assistant. Collecting the initial data in this way should mean that physicians wouldn't need to spend extra time to use this decision support tool. Instead, once the software suggests a set of options for potential diagnoses to be considered, clinical judgment and (possibly) further testing to refine the diagnosis come into play."

Graedon, who said she has known about problem-knowledge couplers for about 15 years, told InformationWeek Healthcare that she hopes to get clinicians and patients associated with the SPM to "think about whether this idea would be advantageous to patients, and how to implement it." She also knew her words would be controversial.

"I figured I would get some doctors very excited," Graedon added.

Graedon said she got the idea for the editorial at Johns Hopkins University's Fifth International Diagnostic Error in Medicine conference last November. "I asked why weren't Weed's proposals being taken seriously," Graedon recalls. "I didn't get a good answer."

As large healthcare providers test the limits, many smaller groups question the value. Also in the new, all-digital Big Data Analytics issue of InformationWeek Healthcare: Ask these six questions about natural language processing before you buy. (Free with registration.)