If you thought social networking was only for kids, Gen Web-ers or geeks, then think again.
Social networking has become a great source for finding people who can help you improve your health, or your medical care.
If you aren’t sure what I mean by social networking, then you’ll recognize it by other names you have heard, like FaceBook, mySpace or Twitter.
Last month I asked who is using these websites to learn more, and many of you voted in my poll. But now it occurs to me that for those of you who don’t, you may be missing out on some solid information that can move you forward in your quest to get better healthcare.
Do you Twitter? Do you have a page at Facebook or any of the other social networking sites? If you’re willing to pitch into the conversation and share what you’ve learned, then please share your ideas – and your IDs, too.
Lest you think patient advocacy is all about sticking up for yourself through doom and gloom, I thought I’d share this piece from Prevention Magazine. I enjoyed it, and learned something from this baker’s dozen of tips. Maybe you’ll learn something, too:
Why do we laugh until we cry?
Why do onions make us tear up?
Why do our joints crack?
What causes goose bumps?
What makes an eyelid twitch?
Why are we always cold?
Are our ears still growing?
Are all babies born without freckles?
What causes pins and needles?
Why do we see halos around lights?
Are “crankles” good for you?
Can gum and cheese help your teeth?
Why do we get side stitches?
One aspect of being a smart patient is being an informed patient. While few of these will actually help you heal or navigate the dysfunctional American healthcare system, at least they’ll give you something to talk about over the dinner table with your family — a very healthy family activity.
I exchange thoughts with healthcare IT people on a daily basis over at Twitter. So many of them seem perplexed at why we patients look at putting our medical records on the internet with trepidation.
Then along comes this video from Elizabeth Cohen at CNN. In a matter of minutes, she was able to pull up one of her CNN colleague’s medical records, his kids’ records… She could see which doctors they’ve visited, what took place during those meetings…
HIPAA is supposed to protect us from others getting our medical records right?
We don’t want potential employers finding out we have to take meds to control blood pressure or cholesterol every day — it’s not their business!
And consider this scenario: you have no health insurance, or maybe you’ve just been laid off and you’ve lost your insurance. Now you need new insurance. Well guess what? Insurers are looking behind the scenes to find reasons to turn you down. Regardless of how easy it is for others to get your medical records, the Medical Information Bureau makes it easy for insurers anyway.
Here’s my opinion on this issue: I absolutely believe our health records need to be online, both to improve our health and to save money. Both are reason enough to do make medical records accessible digitally.
I do NOT believe patients should be putting their own health information online through Google or Microsoft Health Vault or any of the free applications out there, and I very much object to those large organizations (like the Mayo Clinic) which are getting in bed with these two privacy-sucking behemoths. Those “free” applications are not free. I’ve written about that extensively in the past.
Now the government is looking at ways to move all our records online, and they are ready to throw $20 billion into the project. I support that — with this caveat: part of that money must make sure that our records can’t get into the wrong hands — including Elizabeth Cohen’s (Elizabeth, you know I love ya!) — because while Elizabeth is only showing us the potentials, not everyone has our best interests or good motives for doing so.
By the way, Elizabeth takes time in the video to tell us how to protect our records. Take a look. It will serve you well.
(The following is reprinted with permission from John James, PhD, a patient safety advocate who came to his work after the loss of his son, Alex, to medical errors. Dr. James publishes a monthly patient safety newsletter, and has written a book focused on what he learned about the dysfunction of America’s for-profit healthcare system. His book is called A Sea of Broken Hearts. Dr. James has also been one of my guest bloggers.
I share it with you today, because it provides two lessons for us. First, that whenever we access medical information, we must be sure we are assessing it objectively, and getting objective information from it. And second, because it reminds us that medicine is so very personal, that almost no medical information can be completely objective. Even those strictly scientific medical research results we find?… they were biased to some extent when they were designed.
Among those of us who bring you patient empowerment and patient safety information, we do try to be as objective as we can. But…… well….. read what Dr. James has to say…. )
Healthcare Journalism and Truth
A perspective article in the New England Journal of Medicine gave me a dose of my own medicine to ponder. Susan Dentzer, a medical journalist, poses important questions about the role journalists should assume in communicating information to the public.6 To what extent should the big picture be conveyed? How far can one go in sensationalizing a reported medical discovery? Is the story I am writing something my readers might use to determine their own care, and if so do I have a responsibility to be more careful? How far should I go in mentioning caveats to the reported results? Have I over simplified the results to keep my story short?
I have chosen to become a medical journalist in a most unconventional way. I am neither a journalist in the usual sense, nor am I a medical caregiver. I am only a medical scientist trying to communicate to my readers the important patient safety findings that appear in selected medical journals. I am not making a living as a medical journalist. I do this because my heart has been broken by uninformed and unethical medical care, and I do not want this to happen to others.
My stories are intended to be useful to readers in their own medical care and to be useful in informing ordinary folks of risks associated with healthcare. I must ask myself, am I writing in a balanced, objective and clear way? I honestly struggle with these issues at times. Medicine is incredibly complex and placing new information in perspective is not easy. If I seem at times to give medical advice, this is not my intention. I seek to convey scientific facts to you that will help you ask the right questions of your doctor. I’m not a physician, and I don’t pretend to be one.
Am I biased in my reporting to you? As much as I want to be objective, those of you who have read my book know that I think we have an unethical, dangerous and profit-driven healthcare industry. I will do all I can to expose examples of these problems and show how we might one day have an ethical, cost-effective, inclusive, and trustworthy healthcare system. I am biased that way.
As careful as I try to be, I will make errors of perspective and balance in my stories. For all the criticism I level at the American healthcare industry, I too shall err.