CAMBRIDGE, Mass.--(BUSINESS WIRE)--Today, PatientsLikeMe kicks off a new campaign promoting the value of
sharing health information to advance research. In a series of public
service announcement-style videos, the company highlights a movement
called “data for good,” which underscores the power of donating health
data to improve one’s own condition, help others and change medicine.
“This year marks the 10-year anniversary of when our co-founders first
introduced the idea that openness in healthcare is a good thing, and
should be encouraged and celebrated,” says Michael Evers, Executive Vice
President of Marketing and Patient Advocacy at PatientsLikeMe. “The
‘data for good’ campaign is our way of tipping our hats to the massive
amounts of data that our members have shared to date. It’s also meant to
inspire more people to contribute their experiences to accelerate
In the video series, PatientsLikeMe co-founder Jamie Heywood walks
people through the journey of being diagnosed with a life-changing
condition and frames the underlying problem in creating a
patient-centric healthcare system. He then asks everyone to participate
in a movement around health data donation - “join us in this amazing
journey to make your data, your experience drive medicine”.
This campaign launches on the heels of a recent paper published by the
Institute of Medicine (IOM) highlighting a PatientsLikeMe survey focused
on people’s willingness to share health information to change medicine.
According to survey results published in the paper, 94% of U.S. adult
social media users with a medical condition agree with sharing their
health data to help patients like them and should be used to improve the
care of future patients.
“Sharing helps me track important health information and improve
research about this disease. If I am willing to be transparent,
hopefully others will be inspired to do the same,” says Starla Espinoza,
a member of PatientsLikeMe since 2008, joining just months after her
multiple sclerosis diagnosis. Starla represents one of more than 250,000
members who are donating their disease data to research on
PatientsLikeMe. To date, the community has contributed more than 21
million structured data points about their disease experiences including
treatment and symptom reports, demographic information, health outcome
surveys, lab data and more. In a recent study focused on sleep issues,
PatientsLikeMe was able to pull more than 5-years worth of data to
analyze from its platform – including over 184,000 symptom reports
previously shared by 65,000 chronically ill patients. The company then
ran an additional survey to collect more data and received 5,000+
responses in less than two weeks.
PatientsLikeMe’s “data for good” campaign will blanket all of its social
media channels and invite people to join the movement (#dataforgood).
“Your data has a heartbeat that gives new life to medical research and a
better future to someone like you,” says Heywood.
Anyone can join PatientsLikeMe and share their experiences to help
others while helping themselves. To learn more, go to www.patientslikeme.com/dataforgood.
is a patient network that improves lives and a real-time research
platform that advances medicine. Through the network, patients connect
with others who have the same disease or condition and track and share
their own experiences. In the process, they generate data about the
real-world nature of disease that help researchers, pharmaceutical
companies, regulators, providers, and nonprofits develop more effective
products, services and care. With more than 250,000 members,
PatientsLikeMe is a trusted source for real-world disease information
and a clinically robust resource that has published more than 40
peer-reviewed research studies. Visit us at www.patientslikeme.com
or follow us via our blog, Twitter or Facebook.
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