Patients’ Week 2011: Behind every piece of data is a patient
(This piece was written for eyeforpharma’s PatientWeek 2011 and originally posted here September 23, 2011)
Real-world, patient-reported data is becoming more important to everyone in healthcare. One source of that data is patient registries.
According to the US Department of Health & Human Services’ Agency for Healthcare Research and Quality (AHRQ), a patient registry is “a database of confidential patient information that can be analyzed to understand and compare the outcomes and safety of health care.” Ultimately, the goal of capturing and analyzing this data (shared by multiple sources like hospitals, pharmacies, physicians and patients) is to learn from one another and improve healthcare. Like registries, PatientsLikeMe understands the importance of capturing data in a meaningful, computable and quantifiable way.
However, behind every piece of data is a patient.
So, in the spirit of putting patients first, we began thinking about the next generation of a patient registry where patients benefit in real-time from what they share. It would need to be where patients could openly share longitudinal demographic and clinical data about their disease while using online tools to improve their outcomes. It couldn’t be just silos of health data focused on one disease at a time; it would need to encompass data on all diseases and inspire patients to share information about those co-morbidities. Finally, it would need to motivate and engage patients to share more, share better.
If this next generation of a “registry” could ensure long-term data sharing, can you imagine how much meaningful insight would be available for patients and industry alike? We could … and that’s what we’ve been building at PatientsLikeMe for the last five years. We’re excited about what that means for our members each day, as well as what it means for the future of medicine.
Our members believe in community—a one-for-all mindset where they can share what they experience and see the same for every other patient like them; a mindset where they expect us to then pass on those experiences to researchers, companies and others who want to learn together and improve healthcare. When we tell members how we make money (by sharing their de-identified data with our trusted partners), many of those patients say, “Great. Share! Share! Share!”
We, as a community, have no doubt that sharing is the essential ingredient in accelerating research, ensuring patient safety and making better treatments.
As we look beyond the chat room and beyond the traditional patient registry, we see a world where patients are openly sharing meaningful, computable and quantifiable data with each other to make their lives better … and, in turn, making all of medicine that much better too.
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