Wednesday, July 23, 2008

Online Groups Supplement, but Don't Replace, Doctors

Online Groups Supplement, but Don't Replace, Doctors: " In one of the earliest studies of e-patients who were members of an online support community, developer Bill Kelly and I surveyed 191 active members of a family of online support communities, which have since become a part of WebMD. Most of our respondents were seriously ill patients dealing with conditions like breast cancer, prostate cancer, ovarian cancer, and hepatitis C. We asked them to tell us which of the following three resources-their specialist physicians, their primary care physicians, or their online support groups-they would rate most highly in of the following categories:

Best in-depth information on my condition

Best practical knowledge of my condition

Best technical knowledge of my condition

Best for helping me find other medical resources

Best in helping to diagnose my problem correctly

Best in helping and advising on management after diagnosis

Most compassion and empathy

Best in helping with emotional issues

Best in helping with issues of death and dying

Most convenient

Most cost-effective

Most likely to be there for me in the long run

Online groups ranked significantly higher than either generalists or specialists for convenience, cost-effectiveness, emotional support, compassion/empathy, help in dealing with death and dying, medical referrals, practical coping tips, in-depth information and "most likely to be there for me in the long run." By a narrow margin, online health communities were also rated as the best source of technical medical knowledge. Specialist physicians were rated highest for help in diagnosing a condition correctly and for help in managing a condition after diagnosis.

To say that these results surprised us would be an understatement. We were stunned, even dumbfounded. Clearly the value of these groups, as perceived by the patients, was substantially greater than most health professionals had realized. Yet it appeared that online groups had relatively little to offer in some areas (e.g., the process of diagnosis). Doctors' abilities to advise patients on an ongoing treatment plan were also highly valued, as were their technical knowledge and their capacity for support and empathy. In fact, it appeared that doctors were best at what the groups were worst at, and vice versa. We concluded that the combination of a good doctor and a good support group might offer e-patients the best of all possible worlds."

The trick is to know which resource to use for what ! Smart patients know that while most doctors are great at making a diagnosis, they are often not the best source of emotional support !

1 comment:

  1. Anonymous4:52 PM

    When you visit your Dr, the time spent discussing the illness is what, maybe 15 minutes? How often? Maybe once every 6 months? On line groups give the opportunity to discuss an illness and treatment with others who are on the same path. The ideal situation would be to have a social worker/counselor or nurse/counselor working in the office of any physician that works with difficult diagnosis (such as cancer) and the patient would have a meeting with this person immediately after seeing the Dr. Not just having this person available, because the patient may not utilize it, but have this as part of the appointment. Discussions could be much like one would find on an online group. What did the Dr say? What are you doing to treat your symptoms/disease? How are you dealing with this emotionally?
    I go to one clinic that does this after mammograms and bone density and find it amazing to have such a complete appointment.
    It would have made a very big difference if this had been part of my appointments when diagnosed with cancer and going through treatment.
    What 'did' happen was appointments every 3 months that lasted at most 20 minutes and then I was on my own trying to deal with the illness.


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