Strength in family transcends itself to strength in community.
Like all great innovations this is a story that takes the power of love to a tangible asset that contributes to the health and well being of a community. PatientsLikeMe.com allows patients and families to share with a global community often closed off to the average person…and more times then not…closed off to Health care professionals.
The Complexities of Health Care
I for one was an outsider; that is before I joined Cincinnati Children’s. By this I mean I never fully understood the shear complexities to the business of health care. As a patient, a consumer and one who came out of a B to B and B to C industry I quickly found that there was a lot to learn.
Health care is complex…riddled with obstacles from HIPAA privacy practice, compliance issues, pharma companies, insurance companies, politics and a myriad of data and information…all of which can hinder a patients need for educated decision making. In the same light … it is filled with hundreds of thousands of innovative ideas, clinical trials, treatments, patient outcome models and patient stories. We can learn from similar treatments, medications and patients that share like attributes and learn from these similarities to effect or potentially change health outcomes. Open transparency to all of this data is mind boggling at best.
The Right of Shared Communities
So how do you harness this information and share it? How do you get instant access to patient information? How do you go around all of the restrictions for sharing this information? As a Healthcare provider or a health care professional you can’t share this information…but as a patient you have the right as an individual to share this information to the world. Social Networking is the perfect opportunity.
The Power of One – Stephen Haywood
But someone has to build a data model that can compile and make this a user-friendly data repository. Jamie Haywood took the Power of One and made it a family mission to develop PatientsLikeMe.
After finding out that his brother, Stephen, had the terminal illness ALS, Jamie Haywood founded the ALS Therapy Development Institute in 1999. ALS TDI is the world’s first non-profit biotechnology company and accelerated research on the disease by hiring scientists to develop treatments outside of academia and for-profit corporations.
One of “15 companies that will change the world”according to CNN Money
PatientsLikeMe represents a remarkable opportunity to speed up the pace of research. Allowing for instant access to structured, real-world patient data, with reported via clinically validated outcome management tools…this is incredibly powerful. Now add the active engagement of multiple patient communities and you can do something other not for profits applaud. I only hope that an organization like the one I belong to can partner with companies like PatientsLikeMe to conduct scientific research, keyword monitoring, focus groups, online surveys, clinical trial recruitment and more.
Incredible UX / UI
This is built with the user in mind. And our friends at PatientsLikeMe certainly understood the power of user experience and social community. Add to this the power of some incredible visual design and user interface tools and you have one great site. Hats off to the team that developed the creative direction and complex research and data models.
Changing the world…it has a nice ring to it.
Thank you TedGlobal for the use of the video. Thanks to Jamie Haywood and ALS TDI.