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Tuesday May 19, 2015

Far From the Madding Crowd: Whole-Patient Focus Facilitates Diagnosis

Many of us have struggled with perplexing cases in which the diagnosis remains elusive. Trying to solve these seemingly insolvable cases captures the mystery and art of the practice of medicine.

However, for patients, this can quickly become their worst nightmare. One such patient suffered with symptoms that threatened to ruin her life. It took more than three years, evaluations by two dozen physicians and more than $100,000 in medical costs to find the correct diagnosis and treat her condition.

It was that patient's story that inspired Jared Heyman to found CrowdMed.com(www.crowdmed.com) in April of 2013. The patient was his sister.

CrowdMed is an online service that uses the “wisdom of crowds,” along with a prediction market algorithm, to generate a list of possible diagnoses and treatment suggestions for patients with conditions that have not been diagnosed by more traditional medical models. A patient using the service fills out a detailed questionnaire, uploads all of his or her test results, and then the patient's case is reviewed online by what CrowdMed calls its "medical detectives."

According to CrowdMed's website, these are people from all walks of life, although 57 percent of them work in, or are studying for careers in, medical professions. Sixty-nine percent reside in the United States, but 19 countries are represented.

Interestingly, the average age of a medical detective is 36 -- not exactly the gray-haired authority one would envision working on such difficult cases. The medical detectives brainstorm and come up with a list of possible diagnoses that are then ranked in order of most to least probable by the algorithm. The patient then takes the list back to his or her physicians, and, hopefully, a diagnosis is confirmed.

According to CrowdMed, the service comes up with an accurate diagnosis 80 percent of the time.

Of course, there are some legitimate concerns from the medical profession at large, including the ethics of such an arrangement and issues regarding liability. Patients must sign a waiver agreeing that CrowdMed is in no way liable for anything. (Don’t you wish you had that option in your own practice?) Also, although CrowdMed's privacy statement says it will not sell any information that identifies patients, the company reserves the right to sell any nonidentifying information.

CrowdMed also states it is not bound by the Health Insurance Portability and Accountability Act, so it is up to patients to safeguard their identity in anything they upload. Also, buried in the fine print on the site is the disclaimer that if CrowdMed is acquired by another company, it cannot guarantee that a new owner won't sell patients' private information.

Among other concerns about this service is that it may undermine the physician-patient relationship. Patients may start to mistrust their physician or question that physician's qualifications. And who hasn’t had to spend extra time educating a patient who came into the office with a list of diagnoses he or she dug up on Wikipedia?

As I looked at the CrowdMed website -- which has several vignettes of patients who were helped by their service -- I was struck by two things. The first is that many of the vignettes have a common thread: patients who complain they were seen by specialist after specialist without a diagnosis. I wonder, where was the primary care physician during all these subspecialist visits? Perhaps the reason the diagnosis remains elusive in some of these cases is that care is too fragmented and specialty-driven, and we simply cannot see the forest for the trees.

A family physician should be the key person compiling the results of tests and procedures, looking at the patient as a whole, and coordinating that patient's care. Of course, doing so will likely require a significant amount of collaboration, and this can be difficult in our current medical system. Time is limited, and getting multiple physicians to discuss a single case at the same time can be like herding cats.

The second thing that struck me as I read the vignettes was that I often knew the correct diagnosis after the first paragraph. This has nothing to do with my clinical acumen and everything to do with taking a proper history and correctly organizing information. Have we forgotten how to take an adequate patient history?

Our current system sets us up for failure because too often we are pressed for time and put too much emphasis -- and reliance -- on test results. We sometimes forget that no test is infallible, and the results need to be interpreted in the context of the case as a whole.

In some ways, the demand for a service like CrowdMed points out how our medical system can fail patients, and as practitioners, we should do our best to avoid these shortcomings.

Peter Rippey, M.D., enjoys outpatient family and sports medicine practice in a hospital-owned clinic in South Carolina.

Posted at 09:14PM May 19, 2015 by Peter Rippey, M.D.

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