Comments

• Thanks you OTM for addressing this. Patient Data should be free both to the patient and de-identified for scientific research. There is a huge movement which Hugo, myself and many others are part of. Search on ePatietDave, Fred Trotter, or the artist Regina Holliday to learn about patient empowerment. Releasing your own data, whether it be from a pacemaker or just your lab tests, should not be a governmental issue, yet it is illegal in a great number of states.
  in Who Owns Data From Inside Your Body?
  Tuesday January 24, 2012, 04:01 PM
• There exists a wealth of medical information online about conditions, communities to find people with the same condition, and educational resources better than any ten medical schools has ten years ago. Interactive tutorials, original research papers, and encyclopedia entries abound! Indeed, as mozo, RJ, and others have noted, there are walls up around some of the content and a great deal of bias often. Certain sources may be advertisements and they might not be clearly labelled as such. This, however, is not vastly different than any other aspect of what you find online. Do you trust an ebay seller that has no previous sales or negative feedback?. Would you take advice on televisions from ConsumerServices.com rather than ConsumerReports.com? Probably not. The big difference in medicine is that the stakes are higher. There is no manufacturer's warranty printed on our backsides and we can't return bad medical care because it wasn't what we ordered. Add to that the rising costs and plain old complexity of the issues and you have a recipe for failure. So what is the solution? I recommend three actions we can all take. First and foremost - take charge. Understand that you are responsible for knowing all there is to know about your body and your condition. You are the captain of your own ship and no one else cares about you as much as you and your loved ones do. Most healthcare providers do care, but it is not the same level as you ever will. Consider that they need to harden themselves to the pain of caring deeply about every patient, a harsh irony for a profession that is populated by people who generally entered it to take great care of people. Second, self-educate. Read everything you can, go to the forums, engage with the information, ask the experts and other sufferers questions. Cross reference and test for validity. There is almost nothing so complex about biology that most people can grasp. Patient communities like patientslikeme.com, dlife, and ACOR.org are amazing resourses. Often people connect online better than to friends and family who "just don't understand" what it is like to be infertile, lose a limb, suffer from ulcerative colitis, or myriad other problems. Twitter is great for this too. Thirdly, get a professional partner. Search for and seek the best professional(s) for your condition because having the best doctors makes an enormous difference. Seek one that not only is expert in your condition, but embraces your partnership in your health and is willing to consider your opinion. All of this adds up to patient empowerment, becoming what is called an "ePatient." I recommend ePatientDave.com for further reading. Good luck. if you need help, look me up. I recently launched a website that, among other things, is dedicated to that third step.
  in Tabloid Medicine
  Tuesday December 21, 2010, 09:12 PM