The Value of Openness
Welcome to the PatientsLikeMe blog. Here you will get firsthand accounts of our growth and how we are impacting global health care. Why have we chose the name “The Value of Openness”? Read our Openness Philosophy below, and you’ll see why.
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Openness is a good thing.
Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. It may sound counterintuitive, but it’s what drives our groundbreaking concept.
You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.
Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.
PatientsLikeMe enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.
Will you add to our collective knowledge… and help change the course of healthcare?
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Thoughts? Comments? We’re always eager to engage in conversation regarding openness of health data.
Thanks, and welcome to “The Value of Openness”.
do you share patient data collected on the site with trusted partners, or do you sell it to them?
Comment by j doh — December 15, 2007 @ 1:20 am
That’s a great question. Partners include nonprofit advocacy organizations, academic and government research institutions, as well as the life science industry. With our nonprofit and research partners we do arrange special sharing conditions for anonymous aggregated data. The life sciences industry typically pays for anonymous data which is currently the main revenue driver for PatientsLikeMe.
Comment by David S. Williams III — December 15, 2007 @ 8:44 pm
I remember your name and thank you for contacting me. We are all chasing the same dream a cure for this wretched condition and I would be willing to undergo as many interviews as necessary and raise as money as I can to achieve this.
Comment by pussycat — December 18, 2007 @ 2:17 am
openess is definately important all across the board … i don’t pretend to know all, but can only give my experiences … i have no clue as to why, if it is so open here , the people i invited couldn’t even respond with a “no thank you” to be my care team .. and the one that did , said he would reply , along with two others , and i have heard nada ..
open right ? do i not qualify for an answer ?
no response necessary .. since no one else here cares to … agserra
Comment by Adrian — December 27, 2007 @ 10:14 am
Adrian, you bring up an excellent point. The current healthcare system is still rooted in privacy as a rule, which obviously protects patients’ information
The value of openness spreads only if people like you continue to try to engage their health care team to view your patient profile. Some health care professionals (doctors, nurses, therapists, etc.) aren’t ready to engage in this type of activity yet.
Don’t despair. People are becoming more and more open to sharing health information every day. If patients drive this movement, then doctors, nurses, therapists, case workers, everyone will engage in the sharing of information for the benefit of each individual patient as well as all people with life changing conditions. That day is coming….
Comment by David S. Williams III — December 27, 2007 @ 10:59 am
yikes .. thanks for the responce ..
Comment by adrian — January 16, 2008 @ 8:34 pm