The following message was sent this morning to all members of PatientsLikeMe. Please read what we have to say about openness, sharing and its privacy implications and join the conversation.
Dear PatientsLikeMe Members,
What are the privacy implications of sharing in this open, online community? We talk a lot about this and, as a company, strive to be transparent about the risks and rewards to sharing here. Two recent events have prompted me to reach out to all the members of PatientsLikeMe to ensure we all understand openness, sharing and its privacy implications.
The first event happened last month when a patient asked us to remove all the data on his/her profile from the system. The member wrote:
“The reason I’m leaving is I feel I didn’t fully understand the privacy impact of having all my health information for practically anyone in the world to see.”
We rarely receive a request like this, but since receiving this one, I have thought about it every day. We do not want anyone to be surprised by the impact of sharing data on PatientsLikeMe. We believe in openness, but we also want people to knowingly make the choice to be open with their health information.
This brings me to the second event. Recently, we suspended a user who registered as a patient in the Mood community. This user was not a patient, but rather a computer program that scrapes (i.e. reads and stores) forum information. Our system, which alerts us when an account has looked at too many posts or too many patient profiles within a specified time interval, detected the user. We have verified the account was linked to a major media monitoring company, and we have since sent a cease and desist letter to its executives.
While this was not a security breach, it was a clear violation of our User Agreement (which expressly forbids this type of activity) and, more significantly, a violation of the community’s trust. Your Account Information (e.g. your names and emails) was NOT in danger of being stolen. It is likely that the forum information that was “scraped” would be sold as part of that company’s Internet monitoring product. In fact, we sell a similar service, PatientsLikeMeListenTM, to our clients so they better understand the voice of the patient.
What does this all mean to you? What can you do?
- We recognize that people write very personal things in the forum and often use real names. In any growing network of tens of thousands of members, there is no way to ensure that information you share in the forum or on your profiles will not be read by others. Know that the information you enter in our system is shared (unless we tell you it is private, like full name and email in your Account Information). It can and will be read by other patients, the PatientsLikeMe team, researchers, and others that use PatientsLikeMe, including our partners with whom we share de-identified data.
- Please weigh the benefits of sharing and the amazing value you all create in helping each other versus the risks of people, unknown to you, reading your posts. Your input helps PatientsLikeMe and our partners learn about your disease and make better products to meet your needs.
- Learn and understand why we value openness. If you haven’t, please read the Read This! FAQ. If you want to know how we make money, you can take a look at this FAQ or go to our Partners Page and know that we sell your data and insights (but not your identity) to our customers.
- Consider the value of being part of the PatientsLikeMe community and make the right risk decisions for yourself. Together, we can really change the way diseases are treated and managed by putting you, the patients, in the center of healthcare. We can hold companies accountable for the strengths and weaknesses of their products and also help make those products better – but that requires openness and that is your choice.
We welcome your comments and questions and we love feedback. This has been posted on our blog, which is a good place to dialogue, as is the forum.
On behalf of the entire PatientsLikeMe team, I want to thank you for being part of our communities and sharing your experiences.
President and Co-founder, PatientsLikeMe