Transparency, Openness and Privacy

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?

  1. 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.
  2. 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.
  3. 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.
  4. 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.

Ben Heywood
President and Co-founder, PatientsLikeMe

PatientsLikeMe member bheywood

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29 thoughts on “Transparency, Openness and Privacy”

  1. Pingback: Tweets that mention The Value of Openness: The PatientsLikeMe Blog » Transparency, Openness and Privacy --

  2. I can live with you selling the information as long as you continue to reinvest in the infrastructure of the site and keep it more than just up to date. Cutting edge is what I have found here and I expect you will still provide this.

    By the way PLM is currently cutting edge, and you provide an invaluable service to the patients that communicate with each other every day.

    I am also part of LinkedIn and they are miles behind you!

    Please keep up the great work you are doing, you have no idea how much it is appreciated!

    Bill Sullivan

  3. Here is what I have to say about all this secret crap, first if your HIV/AIDS positive it’s who you are now. I firmly believe if we don’t tell people what we are it will keep the creepy ugly illness where has been from the start. I can understand for work but come on people it’s just a virus and the more we open up about it the more we might enlighten and prevent it from spreading it’s ugly wings! I introduce myself all the time as Dyan and I’m HIV positive. I have scared away a few but mostly I have answered many questions, it doesn’t seem so bad when you bring it out of that dark basement, who knows we just might make a difference in one persons life! Who could ask for anything better than that. Peace and health everyone 🙂 Dyan “HIV positive since 2008”

  4. I have no problem… one of the worst things about my mother’s disease (PSP)was how little known it is. Until a disease is well-known, there will be inadequate funding for research into cause or treatment. It would have done me so much good if there had been a support group meeting, in person, locally. That can’t happen until we know one another.

  5. Perhaps John Wayne said it, perhaps his movie character Sgt. Stryker said it, perhaps someone else said it; but regrdless of attribution, the aphorism “Life is tough, but it’s tougher if you’re stupid,” applies here. If you don’t want the world to know about it, don’t put it on the internet.

  6. Dear Mr. Ben Heywood,

    This is excellent Ben and thanks for writing this.

    Recently Fast Company wrote an article about the fact that Facebook began showing all of our contact and other information. The article points out that in this electronic age, we are going to have less and less privacy.

    For people from the ‘old school’, like me, where people respect other’s needs, personal challenges and privacy this is taking some adaptation. Unless I stop using my computer, phone and anything that stores or records information…including mall and freeway cameras…everything I do is now PUBLIC! With the threat of terrorism, the legal barriers that once protected privacy and personal information are being eroded steadily. Worst of all, companies like the one you mentioned, (and governments), inevitably exploit this information.

    As a Hospital and Clinical Pharmacist and then a Business/Personal Coach, I have kept sacred my patient’s and clients information for over 40 years. My role and responsibility is to help people build healthy and more effective lives and inevitably there are a few tears and failures along that path. But this is OK, because it is all part of what makes us human, vulnerable and worth supporting.

    In my experience, all of us are the same. We have things that work and do not work, births, deaths, disease, divorce, crime, broken bodies, spirits and hearts. But knowing this, it is important that we continue to reach out to one another and share our pain as well as our successes. The experience of a community of patients is a golden resource that should not be restrained or with-held from others seeking answers to their challenges.

    Therefore, I encourage members of this site to be bold, brave and don’t let external forces prevent you from reaching out, sharing and supporting one another. To not do so is to give in to those that would usurp or exploit us and in the process people would end up being alone once more, with far fewer resources and much less real life experience of drugs and treatments to share.

    Jimm Hughey, M.S. Pharm and Effectiveness Coach

  7. Jinny Marting

    I find such value in this site. Just knowing you’re here is a relief. Given that anyone can secure information for any place, I won’t let a few cracked hackers silence me.

  8. I am concerned about another issue. The FDA recently turned down UCB’s request for approval for Nepro patch thru a refrigeration process that prevented crystalization
    while UCB continued work on a permanent solution. Europe approved this application. Parkinson’s patients in Europe
    now can legally obtain the neupro patch. I found the patch beneficial in my pd treatment and have found no replacement treatment. I think FDA is penalizing PD patients who found the patch benefical by this decision. Does any other PD patient want to protest this decision?
    If so, how do we protest?

  9. Ben, this is a blue-ribbon message. Really exemplary.

    For both items, you said clearly & simply what people needed to know. Also, I was particularly impressed with your bot-detector software, and the top-notch clear/concise description of what such things do.

    It was good to see you. The more I hear you talk (and write) the more I admire your skills. (Sorry, don’t wanna get too fawning here…well done though.)

  10. I felt like I could be open in my account entirely due to the fact that no one can use this information against me as I do not work and am retired plus I have openly discussed the use of this site to my treating Dr, or pdoc. So I am not worried about my information being misused. If anyone wants to harm me with this information that I have on this site I sincerely doubt they will be able to do so.

  11. I don’t see that patients like me can do me any harm just some good conversation.

  12. PLM isn’t “cutting edge” .. both Google and Microsoft have similar projects .. Microsoft has a health vault sort of thing .. and so does Google .. they’re just not at the advanced stage that PLM’s at, right now .. especially having integrated the forums .. (plenty of those on the web .. like .., etc.) ..

    I have a thing against Pharma firms .. they’re in the business of keeping people SICK .. (otherwise, let’s face it, they’d be so out of business) .. after all, pharmaceuticals are a huge lobby .. and I firmly believe, are the reason why cures to things such as cancer aren’t being made public .. otherwise, can you imagine? .. if the cure to cancer were to be found .. how many of these pharmaceuticals would go out of business? ..

    I don’t know if I’m comfortable with my personal data/information being sold to these firms.

  13. Colleen Henderson-Heywood

    Dear Ben
    Thank you for watching over us without taking away our ability to make our own choices and decisions. It is a personal journey (actually I prefer to call my experiences an adventure) and like everything in life there are associated risks. What I love about PLM is the grown up, no nonsense, clear way you ‘speak’, bravo.
    And a quick note to Jimm Hughey thanking him for his beautifully crafted comment, which I found insightful and eloquent.

    I am sat here in Scotland, the sun flooding through my windows it is tranquil, Idyllic and in front of me lies the page of the day to fill.. having been inspired by you personally and PLM it bodes to be a great Friday 🙂

    Colleen Henderson-Heywood

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  17. Dear Ben,

    I want to ask you what is the right way (if there is any) for monitoring media companies to access the data from PatientsLikeMe?


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  19. Massive kudos Ben! I am not a patient, nor am I a member, but I do consider myself a passionate patient advocate. I have blogged twice this week about the essential need for transparency regarding patient data and it’s impact. is a huge leap forward, congratulations.


  20. My dearest Ben, If you and I live to be a hundred my picture of you will always be of you behind the glass board plotting progressions. That day I decided to trust you with all my heart and have never looked back. We in Parkinson’s were such a tiny little community and look at us now. I never have a day go by without PLM. I have personally watched “The Boys and Crew” take Neurological Disorders from a “What” to a “Yes let’s Talk” status. With everyday of my four year advocacy for Parkinson’s and, I have watched the change. You have , by yourself brought us, as patients, from sitting asleep in the back of a nursing home…to speaking our piece and once again being heard and being considered a vibrant part of this society. America needs us, We are your past and We hold the answers to your future….Keep on “Gettin U Done” Love ya all Pokie

  21. 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.”

    I just wondered who did the member think was reading her comments, when she posted her experiences?

    I guess it is still not clear to many people- ANYTHING POSTED ON A NETWORKING SITE OR BLOG IS NEVER PRIVATE.

    Anyway, thanks for the clarification Ben- Mr. Heywood, for all to read. I truly appreciated this site when i was first diagnosed. It brought me great comfort and solace, knowing I am not alone in my illness- Fibromyalgia.

  22. Pingback: The Value of Openness: The PatientsLikeMe Blog » PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)

  23. I just wanted to say that I felt the whole point of this website was to share personal information with others so there could be an open exchange of ideas to help “think outside the box” regarding our issues to help us be more proactive in our treatment. I personally knew when I signed up that it would be public information. I have also found that I have helped others in similar situations due to what I shared. Talk about validating!

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