2 new medical websites: family health portrait, patientslikeme
The first is from the U.S. Surgeon General’s office, but this government site is almost fun to use, and certainly has lots of potential value. It helps you assemble and organize your family’s medical history, with an emphasis on illnesses that may have a hereditary component such as hypertension, some kidney and gastrointestinal illnesses, bleeding disorders, Alzheimer’s, and many more…
Called My Family Health Portrait, you log in with your own medical data, and then enter as much as you know about your parents, siblings, aunts, and uncles. The information is not transmitted and you don’t have to use your real name. Plus the data is not stored online, so you have to print out the information to save it. You can bring an incomplete printout to your relatives to help fill in more details, and you end up with a very valuable family disease tree. You can share that with your entire family, and bring to your doctor for analysis (the site itself doesn’t analyze the data). In the future the site will enable data input into an Electronic Health Record if you desire.
The second site is PatientsLikeMe.com. The concept here is to form large online communities for people with very specific medical illnesses, ranging from the common (such as depression, anxiety, Parkinson’s disease) to the very rare (like Primary Lateral Sclerosis, Progressive Supranuclear Palsy). Once you join a specific community, one emphasis seems to be sharing new or experimental treatment experiences with others. You might learn about a new drug or clinical trial that your doctor may not have disclosed to you.
Unlike My Family Health Portrait above, PatientsLikeMe is a commercial site, and they collect personal information which is stored and transmitted. This site is definitely for-profit, and “About Us” lists several investment firm “partners”, along with a number of foundations and drug companies, who will use the collected data in marketing and other ways. So read the Privacy Policy carefully before you join. Realize that some postings and information on the site will not be accurate and could be influenced by financial concerns. That said, PatientsLikeMe may be valuable for people looking for the latest treatments available, particularly those with more uncommon diseases.
