Institute of Medicine

PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine

Public Service Announcement-Style Video Calls Patients to “Donate Your Data for You. For Others. For Good” CAMBRIDGE, MA – March 10, 2014 – 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 research. 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 – …

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Social media users say ‘yes’ to sharing health data

There are some new survey results that just came out from the Institute of Medicine’s Evidence Communication Innovation Collaborative (ECIC) that show social media users give the stamp of approval to sharing health data. (A big, public shout out to the more than 2,000 PatientsLikeMe members who participated in the survey.) It’s very exciting to see the voices of so many in the community having such an impact. Check out the results below and read more about it in the PatientsLikeMe newsroom.  

Partnering with Patients to Improve Healthcare

Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into our presentation, and Sally reported that it made the experience quite special for her. The day-and-a-half-long meeting brought together clinicians, researchers, policy makers, advocates, patients and caregivers—people who all care about creating better value and improving the quality of healthcare in the US. In the opening remarks by IOM Chairman Michael McGinnis, whose arm was in a sling, we were reminded that everyone is a patient at some point, but most don’t always have that mindset. The meeting covered many topics, including the problems with healthcare that are complicated and hard to change. Coming from the PatientsLikeMe community team, the topic that struck me most was empowering patients to meaningfully participate in the decisions that affect them, such as which treatment to take or which doctor to see. There are many barriers to finding the answers, and we have a long way to go in …

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Creating Your “A Team” for Health

Today’s guest post is written by PatientsLikeMe Vice President for Advocacy, Policy and Patient Safety Sally Okun, RN, MMHS. Getting health care can often feel like you’re trying to put together a difficult jigsaw puzzle, only to find that some of the pieces are missing. Even under the best circumstances, navigating the health care system is challenging for patients like you and your caregivers.  Worse, when health care is provided in an uncoordinated and fragmented way, the quality of care and patient safety can be compromised. These are all reasons the idea of “team-based care” is gaining momentum, and emerging as an important factor in helping patients better manage their conditions. For the past year, I’ve been honored to be part of a working group commissioned by the Institute of Medicine (IOM) to write a discussion paper on this topic. Our team, made up of health care professionals and leading academics from the University of Washington, American Medical Association, Rush University Medical Center, American Academy of Physician Assistants and American College of Clinical Pharmacy, pulled together all that we learned during our monthly meetings, interviews with teams from around the country and input from national experts on “team based care.”  The …

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