New York City is helping officials better understand and respond to public health needs by putting data at their fingertips. The NYC Macroscope uses information captured routinely in the doctor’s office to paint a picture of health for the entire city—quickly, accurately and inexpensively. This powerful use of electronic health records has the potential to transform public health decision-making across the country. Learn more in this NewPublicHealth interview with the NYC Macroscope’s Carolyn Greene, MD. — Brian Quinn

When the Robert Wood Johnson Foundation launched the Pioneer Portfolio, my colleagues and I asked ourselves what fields might produce the greatest potential game-changers for health and health care. Genomics was at the top of the list. The human genome had been mapped and fantastic discoveries had begun to blossom, but a true era of personalized medicine still seemed too far off.

So we set out to do what Pioneer does best. We explored and learned. We networked.  We asked a lot of questions.  And we began to hunt down ideas.

On March 12, PBS NewsHour did a feature story on one of the big ideas that came out of that process: the world’s largest, deepest, and most diverse “biobank.” It presented a good opportunity to share the backstory. 

Over the past seven years, Project HealthDesign supported 14 dedicated research teams in devising fascinating ways to use mobile technology to broaden the patient-provider dialogue and empower patients to manage their health outside of the clinical setting.

In this “tell us your story” feature, National Program Director Patricia Flatley Brennan discusses how through grantees’ work and collaboration, they came to the simple but powerful conclusion that some of the richest and most essential information about people’s health isn’t found at a clinic or hospital: it’s found in their personal attention to the details of their own lives.

Project HealthDesign is a national program of the Robert Wood Johnson Foundation's Pioneer Portfolio. This post originally appeared on the Project HealthDesign blog on June 26, 2012.

Throughout Project HealthDesign’s history, our grantee teams have worked closely with patients in order to explore the potential of personal health records (PHRs) and personal health data. As our first nine teams worked on their projects, they listened closely to patients and began hearing patients describe their health in idiosyncratic ways. Their work led to the recognition of observations of daily living (ODLs) — information about an individual’s life that is both patient-defined and patient-generated.

Project HealthDesign's five most recent grantee teams have carried this vision forward by designing five different technical systems that allow patients to track their ODL data. In these projects, patient participants have tracked a variety of ODLs, from daily activity and stress levels to socializing and moods.

But ODLs are just one type of patient-generated data. Other types include traditional patient-reported information about signs and symptoms (e.g., blood pressure, blood glucose), sensor data, patient preference data, and patient-reported quality assessment data.

Last Friday, Patricia Flatley Brennan, RN, PhD, Project HealthDesign’s national program director, and Nikolai Kirienko, co-project director for Project HealthDesign’s Crohnology.MD team, testified at a hearing on the incorporation of patient-generated data into Meaningful Use Stage 3 criteria. The hearing was organized by the Meaningful Use Workgroup of the Federal Health IT Policy Committee.

Meaningful Use Stage 3, scheduled to roll out in 2016, will set requirements for health care providers seeking incentive payments for the adoption of electronic health records. Brennan’s testimony drew upon the experiences of all 14 Project HealthDesign teams working with patients and clinicians to collect and track patient-generated data. Previously, Brennan provided testimony to set requirements for the first stage of Meaningful Use.

Kirienko’s testimony drew upon the experiences of Project HealthDesign’s Chronology.MD team; he also spoke as an advocate for patient engagement in health and health care through collaboration with clinicians around patient-generated data. His testimony focused on the need for patient access to electronic health records and the need for standards for dynamic patient engagement on mobile devices.

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