Search all of the Society for Participatory Medicine website:Search

Abstract

Keywords: Evidence-based medicine, standard of care, EMRs, health data, access to data, e-patient, patient engagement.
Citation: Graedon T. Is the standard of care good enough for you? J Participat Med. 2012 Oct 3; 4:e23.
Published: October 3, 2012.
Competing Interests: The author has declared that no competing interests exist.

There’s a race on for hospitals and health care providers to demonstrate evidence-based practice.[1] But while evidence-based care is certainly better than care based on opinion, speculation, or tradition, patients need to start depending on each other to get the best care possible. Evidence is often cited as the basis of guidelines for “the standard of care.” In many situations, however, the standard of care does not guarantee the best possible care for a given condition.

In an essay for the New Yorker titled “The Bell Curve,” Dr. Atul Gawande argued that much of the medical care Americans get is not the best.[2] A bell-shaped curve is a description of a “normal distribution” of data, with rare occurrences spread out to either side of the curve and most events clustered near the middle. This is why when Garrison Keillor of A Prairie Home Companion says about the fictitious Lake Woebegone that “all the children are above average,” he is making a joke. But good health care is no laughing matter. Even evidence-based medicine may be near the hump of the bell curve, nowhere near the best care that could be provided for a given condition. Dr. Gawande pointed to a hospital in Minnesota treating cystic fibrosis with patient outcomes far outpacing the national average.

By and large, neither patients nor physicians are aware of the huge discrepancies that may exist when what matters are the outcomes of medical care. We do not have good ways of evaluating health care or seeking out care that is truly outstanding. Even at a highly respected institution, the usual standard of care may not always result in the best possible outcome for the patient.

A short while ago, we were contacted by an acquaintance who had just been diagnosed with multiple myeloma. His respected local oncologist had already set up a treatment plan for him and was ready to get started. But because we knew that the University of Arkansas Medical System’s myeloma clinic provides exceptional care for multiple myeloma, we volunteered to put him in touch with someone there. The clinic responded promptly and soon our friend was undergoing treatment radically different from that proposed by his original oncologist, a physician who treats many other types of blood cancers as well as multiple myeloma.

We hope that our acquaintance will have an excellent outcome of his treatment, and we have every reason to expect that. But what of the hundreds of other people diagnosed with multiple myeloma who don’t know where to find the best care for their cancer? What about patients diagnosed with complicated endocrine or orthopedic conditions who are hard-pressed to learn where they could get the best treatment, or even what that might be?

Physicians are not immune from this dilemma when they become patients. Dr. Itzhak Brook describes his serious doubts and difficulties trying to select the best type of surgery and the surgeon to treat his throat cancer.[3] His initial decision to go with a less-experienced local surgeon resulted in agonizing complications.

This is where the real value of connection, along with the engagement and empowerment that distinguish e-patients, comes to the fore. Being part of a supportive community of people with the same diagnosis can offer great information about which treatments may be most useful, as well as details about how treatment after-effects can ripple through a person’s day-to-day life. Connected patients can often stay up to date better than over-worked health professionals. Evidence is continually changing as medical science progresses, and patients have both the time and the motivation to stay informed. They can also alert each other to the providers who are at the cutting edge of high-quality treatment for a hard-to-treat condition. When e-patient Dave deBronkart was first diagnosed with a rare cancer (RCC), other RCC patients on the ACOR list he joined told him about the oncologist and the treatment that saved his life.[4]

Evaluating medical care is still an intransigent problem that has not yet been solved. A patient diagnosed with a life-threatening condition should not have to accept run-of-the-mill, middle-of-the-curve, standard of care treatment when she knows that excellent care is available somewhere. Finding out where is hard, even for health care professionals. There is no central clearinghouse for outcomes data, and most hospitals carefully maintain secrecy about how they measure up on safety and results. Isn’t it time to shift this worn-out paradigm? As health care resources become scarcer, one that has been chronically underutilized is the network of activated people undergoing treatment. Let patients help.

References

  1. Joint commission names top hospitals for evidence-based care. California Healthline. September 19, 2011. Available at: http://www.californiahealthline.org/articles/2012/9/19/joint-commission-names-top-hospitals-for-evidencebased-care.aspx#ixzz28Eqwm0cT. Accessed September 25, 2012.
  2. Gawande A. The bell curve. New Yorker. December 6, 2004. Available at: http://www.newyorker.com/archive/2004/12/06/041206fa_fact. Accessed September 25, 2012.
  3. Brook I. My Voice: A Physician’s Personal Experience with Throat Cancer. Self-published; 2009.
  4. Dave deBronkart: meet e-Patient Dave [Video]. TED. Available at: http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave.html. Accessed September 25, 2012.

Copyright: © 2012 Terry Graedon. 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.

 

 

Donate