Comments on: It’s Not “Patient Empowerment” If You Feel Powerless: A Story About Today

By: Alex

Alex — Sun, 28 Mar 2010 23:12:19 +0000

Nicely said. I always find I'm holding people back when I have to ask questions, though I do ask a lot. The last time I went to see a specialist I had stocked up a good 10 or so questions (and a few more that arose after I heard the answers) to ask over the 3-month waiting period. The specialist was surprised and impressed that I actually had so many questions (questions, which I really think anyone in a similar situation should have been asking), so I'm with you there. We should have a health care environment where asking questions is encouraged, especially with specialists (who are usually the first ones to shut you down) because, for the most part, GPs are ignorant on all these kinds of specifics.

By: Elizabeth Han

Elizabeth Han — Mon, 08 Mar 2010 07:54:37 +0000

Trisha, thank you for your thoughtful comment! Indeed, I don't expect any sudden paradigm shifts soon in the medical profession re: e-patients. The change will need to be initiated by enlightened individuals on both sides of the relationship, who will hopefully inspire others by example. Interestingly, the March 4th issue of NEJM published the results of study indicating that despite the rise in popularity of the internet, patients' trust in their doctors has increased since 2002, while their trust of web health information decreased. Furthermore, while patients often turn to the web first for what they perceive to be minor inquiries, they are much more likely to take the results of their search to their next doctor's appointment. My blog post was inspired by some real-life experiences, but I am glad to note that their are some trends showing that these disappointing stories may be on the decline. As an aside, I am a fan of About.com's resources for empowered patients and Medicine 2.0 - keep up the excellent work!

By: Trisha Torrey

Trisha Torrey — Sat, 06 Mar 2010 20:58:59 +0000

Elizabeth,

Thanks for taking a look at the unempowered patient - which describes the majority of patients, no matter what country (Canada, US, others) you are talking about. Even among those who feel like they have their medical care under control - it may be someone else's control it's under, not their own.

Patients need to understand they play a vital role in their own care. If they don't ask the relevant questions, they can't play that role successfully.

That said, it's a massive mindshift in the way we have traditionally approached care. The doctor DID used to be God! But he or she can't be counted on for that any longer -- and I'm guessing that's just fine by most doctors.

Unfortunately, too few doctors are as enlightened as you are about the patient's need to know. Unless we have had a longer term relationship with you, the doctor, to begin with, we have to take a guess at how you will react when we ask questions. Too often we have been belittled, or brushed off, or simply ignored. In the few minutes we have with you, we don't DARE guess wrong at how you will receive the questions.... so it's easier just not to ask.

I'm not saying that's right. I'm saying it's reality.

Thanks for posting such an important point.

Trisha Torrey
Every Patient's Advocate

By: Elizabeth Han

Elizabeth Han — Fri, 05 Mar 2010 19:59:56 +0000

Yes, there is definitely a tendency in medicine to be reactionary in that way. I don't know what can be done besides to educate both patients and health care workers – the former to document the credibility of the online sources they find, and the latter to be open-minded about discussing. It will be an incremental shift, but I think it will happen. I was reading about some physicians who are using the note-client Evernote to store interesting journal articles and blog posts that they feel certain patients would want to look at…something like that could be the catalyst for a 2-way sharing of online information and break down the psychological barrier.

By: Vicki

Vicki — Thu, 04 Mar 2010 13:57:59 +0000

Interesting post! Back in 2007, a friend and I volunteered at a children-with-diabetes conference in Florida. There was somebody there employed by a big pharma firm who was trying to curb diabetes by repressing the immune system. My friend and I thought that was very counter-intuitive and wanted to know more about what he was doing, so we asked. He belittled every single question we had for him, even though they were really quite reasonable. We were both fairly confident in our knowledge and intellect and so took his reaction with a grain of salt, but I can't imagine how difficult it would be for people who suspect that something with the research might not be quite right but are worried they'd sound stupid if they asked about it. Cheers!