Abstract
Keywords: Misdiagnosis, diagnostic error, participatory medicine, shared decision making, physician-patient communication.
Citation: Greene A. Participatory Diagnosis. J Participat Med. 2013 May 22; 5:e21.
Published: May 22, 2013.
Competing Interests: Dr. Greene has worked for a number of eHealth businesses (see author biography).
The art and science of clinical diagnosis are at the heart of the practice of medicine. But recent study of the accuracy of the diagnostic process in practice has uncovered the uncomfortable truth that more than 150,000 patients per year may undergo considerable preventable harm from incorrect diagnosis.[1] Misdiagnosis is both widespread and deadly.
Why are there so many diagnostic errors? This is a complex issue, but trying to arrive at a diagnosis in a doctor’s office is often done in a very limited window of time and accomplished with incomplete information. The feedback loop to check the accuracy of the diagnosis is frequently incomplete as well.
The process of arriving at a diagnosis includes gathering relevant information, recognizing a list of possible causes for these findings, using additional information to prune that list, validating the likely cause, and carefully following up to ensure that the ongoing clinical course continues to validate that diagnosis.
My wife experienced the fracture and failure of an indwelling chemotherapy port many years ago, and was aware of a problem long before it was evident to others. She had sensory information no one else had, but was not taken seriously until it was almost too late.
Participatory diagnosis starts with respecting the patient’s perspective on what has transpired. But it goes further.
As recently as last night, when I went to a local hospital with an older family member who had fallen on some stairs, the physician brushed aside our attempts to be involved, beyond giving a basic history.
At one point he said, “We’re going to do some blood tests.”
I inquired as to what blood tests were being ordered, but was told not to worry about it; they were routine. I pressed further and asked if an INR was ordered (a test used to measure the clotting tendency of blood), noting that the patient was taking an anticoagulant medication.
“Yes, along with several other tests.”
When we asked again, “Which other tests?” we were told that our job was to relax and answer questions. We’d have a time for asking questions at the end, once they had determined the nature of the injuries. We would also have a role in choosing among appropriate treatment alternatives at the end.
But diagnosis was for doctors.
This perspective does not belong to just a few isolated old-school doctors. I’ve encountered it in those who consider themselves to be patient-centric and welcoming of a physician-patient partnership. Otherwise strong (and funny) nationally-award-winning patient education videos tell patients to stay out of the diagnostic process.
[2] Diagnosis is your doctor’s job.
But last night we, the patient and his family, had additional expertise and inside knowledge with which to consider the emerging data. Our perspective was deemed a nuisance rather than a resource. This led directly to missing an important part of the diagnosis. Taking the time to involve us could have saved time.
No one has a greater stake in the diagnosis than the patients themselves. It’s time to explicitly recognize and welcome their involvement in the diagnostic process. By the time the decision has been made to consult a clinician, patients have already begun to notice findings and generate hypotheses. This is of great value.
Rather than denigrating their partial or complete self-diagnosis, clinicians should encourage, inform, and incorporate the patients’ process as a tool for arriving at the truth. And encourage it all the way through to the end.
Because diagnosis depends on probabilities, some initial error is inevitable. Even at 99.9% accuracy, 1.2 billion physician visits per year in the US could result in more than a million errors.[3] Involving the patient in followup is a critical part of diagnosis.
Emerging mobile technologies — especially in the hands of patients themselves — offer great promise to prevent medical errors and improve health by gathering better data, suggesting relevant possible diagnoses that might be missed, and closing the loop by building followup and feedback into the system.
Participatory medicine is not just talk. It’s a fundamental shift. And because diagnosis is central to medicine, participatory medicine implies participatory diagnosis.
While the statistics about serious patient harm from misdiagnosis are troubling, they are also a clear measure of how much our health could be improved in the near-term with better diagnosis. Participatory diagnosis is better diagnosis.
References
- Newman-Toker DE, Makary M. Measuring diagnostic errors in primary care. JAMA Intern Med. 2013;(online Feb. 25):1-2. doi:10.1001/jamainternmed.2013.225 ↩
- The Appointment. HealthMedia. Available at: http://www.healthmedia.com/appointment/. Accessed May 22, 2013. ↩
- Centers for Disease Control and Prevention. Faststats: Ambulatory Care Use and Physician Visits. Available at: http://www.cdc.gov/nchs/fastats/docvisit.htm. Accessed May 22, 2013. ↩
Copyright: © 2013 Alan Greene. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
Great article! It’s so important that participatory medicine is recognized as not just about treatment, but also about diagnosis–which is key to everything else that follows. My book, When Doctors Don’t Listen, is about how patients can participate in their diagnostic process; would love to hear other ideas from patients and providers.
The paternalistic model of medical practice is, unfortunately, still a reality. Hopefully the benefits of participatory medicine will be appreciated by younger physicians, or by the established clinicians who have “seen the light.” Although making diagnosis reliable and safe is the primary responsibility of the medical community, patients can play an incredibly important role by acting as a safety net and becoming a true partner in the diagnostic process. Kudos to Alan Greene for trying to establish this kind of partnership. When the MD did not get the message, I think it would also have been very appropriate for the patient and family to be more direct, and clearly state that they had additional information that was important for the physician to hear. That might not have been well received, but the advice to “Speak Up” should perhaps be amended to recommend persisting until you are heard.
“No one has a greater stake in the diagnosis than the patients themselves.”
I emphatically agree. However, when the hospital and/or physician is being paid by an insurance company or, increasingly more often, the government, it is very common for such “health providers” to view the patient as incidental and the payment provider as in essence the “client.” This is reminiscent of the old saying, “He who pays the piper calls the tune.” Tests, procedures, and prescription-requiring chemicals — which ones and whether or not “acceptable” — are even now determined by government either directly via regulations or indirectly through “guidelines,” and these are reiterated by insurance payers. This situation will almost certainly increase and worsen as government, federal and/or state, interposes itself more in what was originally a strictly private transaction between an individual (for him/her self or for a dependent) and a physician or other health care provider. As long as the majority of US citizens are accepting of the government serving in effect as their parent in health care matters, especially including the payment of such “care,” a “participatory” relationship of strictly provider-patient will not come about.
The question is twofold:
1) How can patients ENGAGE doctors BETTER about becoming participatory?
2) How can doctors become participatory in a non-disruptive manner? (From my observation it seems concierge doctors are very interested in this, have you seen others?)