Is Online Privacy Overrated?

You and your doctor are partners. You are both responsible for taking care of you. For the patient to carry his or her own weight in this symbiotic relationship, the acquisition of knowledge is key. If you don't learn as much as possible about your particular disease or ailment and the treatment options available you will not be able to contribute to the partnership, the goal of which is your good health. I recently became aware of a very interesting website that helps patients learn about their own health needs by reviewing the detailed health care history of other patients with the same or similar needs. The site is called Patients Like Me. The website takes a counter-intuitive approach toward patient privacy in order to provide what just may be a tremendous service. On the site patients provide each other with detailed descriptions of themselves, their health issues, treatments, symptoms, medications, etc. The idea is that a participating member with say ALS can review the experiences of other patients with ALS in order to get a sense of what worked and what didn't. In this way the information from the community can be shared with your physician to decide upon and tweak a personalized treatment plan. The website allows searches by symptom, disease and particular treatment. According to the site's developers a research team has been retained to post about specific medical studies of interest to the community.

As will services like Google Health, members of the Patients Like Me community arguably give up something in order to participate. Whenever you post personal data on the internet there is a risk that persons that you may not wish to have such information will. That important concern noted, it seems to me that for many patients the reward my well be worth the risk.

Roll Up Your Sleeves and Don the White Coat

You and your doctor are partners, and equal partners at that when it comes to managing your health. When a health issue arises, you are best off viewing the relationship in just that way. The physician should not be seen as the person charged with making you well as you sit idly by. Instead, the two of you are tackling the matter together. True, the doctor has a base of knowledge, training and experience in medicine that you do not. However, in our age of information you might be surprised how quickly and easily you can learn about a particular health issue whether it be about a specific disease, drug interactions or therapeutic options. I know this from first hand experience. Whenever I file a lawsuit against a physician alleging medical malpractice I learn all I can about the health issues relevant to the case. I generally start online searching relevant topics broadly before narrowing my search. I might start by searching the web on Google using basic terms like say "pulmonary embolism". Google will usually lead me to places like Wikipedia or WebMD where I will gain some basic information about what a pulmonary embolism is. From there, I will likely narrow my search terms and build upon my knowledge base by going to Google Scholar or PubMed. These websites contain articles and research papers often written by physicians for other physicians that you can often obtain for free. They help you learn what the doctors know. At one of these sites I might enter search terms like "prevalence of pulmonary embolism in pediatric patients with nephrotic syndrome." Doing so will often produce the most up to date research on a given medical topic. Also, searching the bibliography of a particular medical article will often lead you to other research papers relevant to your search. While you do this more and more intelligent questions to be posed to your doctor pop into your head. By spending some time at this you eventually learn enough to offer some real input into the search for your diagnosis or the options for your treatment.

Links to several websites that I've found helpful over the years are listed down the right hand side of this blog. It is important to note that you should always, always confirm information you get on the internet by searching more than one website. If website "q" says blue, but websites "x", "y" and "z" say green you'll probably want to disregard the credibility of website "q".

A few weeks after my daughter was born I noticed that on two or three occasions she shook or quivered very briefly for no apparent reason. These were not violent events, but I noticed them. She was our first born so I didn't know what to think and I was trying be hyper-vigilant about her health and needs. I mentioned these events to her pediatrician at the next visit. As I tried clumsily to describe what I had noticed, I told the doctor that my daughter seemed to have brief "seizures." That was a big mistake. Using that term made the doctor feel compelled to order a brain CAT scan, a test which, for a newborn, presents its own complexities and troublesome aspects. We scheduled her for a scan, but in the meantime I did as much research as I could to figure out the likelihood that my daughter had a serious problem. I determined that her "seizures" were probably caused by gas in her still developing digestive tract. I stressed about going through with the CAT scan for a few days, but then ultimately decided that putting her through the trauma the test would bring for what was almost certainly nothing would be a bad idea. We canceled the CAT scan and she's been perfectly normal since.