For over five years now, I’ve mentioned Patients Like Me in nearly all of my “digital engagement” related speeches. It is one of my favourite examples of big data used to improve actual lives.
What is it?
An online social network dedicated primarily to chronically ill patients.
How does it work?
Patients fill out their individual health profiles based on their condition. They then provide information such as:
- Basic Demographics
What’s the benefit?
When you have 220,000 members sharing information about 2,000+ conditions the result is access to an incredible amount of visual aggregate information that patients can use to stay informed, discover new treatments and more importantly, find support by interacting with others going through the same thing.
As of this month there are over 1 million treatment and symptom reports (based on actual user data) , which has led to 35+ published research studies examining this phenomenon and numerous partnerships between public, private and non-profit organizations each seeking to tap into this wealth of individual health information.
What do the skeptics say?
The usual of course:
- What about privacy?
- What if big pharma creates fake accounts with positive reviews about their product?
- What if your insurance company proceeds to eavesdrop on your profile?
Answers in short:
- At the end of the day these patients want to feel better or find support NOW. They are not getting it through the status quo of having their data safeguarded solely by their specialist whom they see once every six (or more) months.
- What if someone creates a fake Facebook profile or a false Wikipedia entry? It happens, but it’s such a small proportion of all contributions that the data is not skewed with any statistical significance.
- The platform encourages the use of pseudonyms
Here’s their video explaining all of this with a bit more detail