12 November 2012

Day 12: Patients Like Me

Day 12 – Monday, Nov. 12
Call BS on something. What’s something that is just ridiculous?

“My favorite health app / device / game is…” and review it

Patients Like Me wins, hands down. This is a website where patients of all sorts of disorders - AIDS, Fibromyalgia, Depression, and many many more - can track their symptoms over time. It has loads of nifty features, such as the "Doctor Visit Sheet" which prints out a report that you can show to your doctor or use when you need to give records for insurance or benefits. In addition to symptoms, it lets me track my weight, menstrual cycle, medications, and lab tests of all sorts.

Instant Me

Whatever your illness, it is usually recommended to keep a patient diary, but this is rarely easy to do. When your illness is one that causes fatigue, and you barely have enough energy to take care of your own basic needs, it's even more difficult. My symptoms are severe, but I have managed to use Patients Like Me regularly, with only a few gaps, since April of 2010. This makes it an invaluable record that I would not have if it were not very easy to use.

Pain and Fatigue Rating Scale
One factor that some might consider before joining is that the data is open. The only privacy settings are to make it open to everyone or open to site members. There is no private to everyone. This is because of the site's ethos, which is "The Value of Openness". They believe in connecting patients with one another, as well as collecting the medical data of hundreds of patients to help in medical research.
  • How does PatientsLikeMe make money?

    We take the information patients like you share about your experience with the disease and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services.  Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients.  We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. 
    By selling this data and engaging our partners in conversations about patient needs, we're helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients.
    PatientsLikeMe is a for-profit company (with a not-just-for-profit attitude).  Every partnership we develop must bring us closer to aligning patient and industry interests. Our end goal is improved patient care and quality of life.

If you want to speak to other people who have your symptoms or illness, you can easily connect to them in various ways. The most straightforward is the patient forums, but there are also more creative ways like connecting with other patients that have your illness and have used a certain medication or had a similar set of symptoms as yours.

Unrefreshing or Poor Sleep Report
Patients Like Me is free, but I love it so much that I'd pay for this functionality if it suddenly turned into a pay site. It's an amazing site, and I'm very glad to have it.


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