Mining a Treasure Trove of Essential Information about People’s Health

    • November 27, 2012

Here at the National Program Office for Project HealthDesign (PHD), we are heading into the final months of a seven-year journey made possible by the vision of the Robert Wood Johnson Foundation. Working side by side with our innovative partners at RWJF, we set out to rethink the potential of next-generation personal health records (PHRs), to imagine them not as static repositories of medical data but as dynamic and interactive tools for both patients and clinicians.

Over the course of the past seven years, we’ve been privileged to work with 14 teams of brilliant, dedicated, and imaginative professionals—nurses, computer scientists, physicians, researchers, and others. They devised fascinating ways to use mobile technology—cell phones and other personal devices—to broaden the patient-provider dialogue and empower patients to manage their own health outside of the clinical setting. Through our grantees’ work and collaboration, we 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 peoples’ personal attention to the details of their own lives.

We labeled this patient-generated data Observations of Daily Living, or ODLs. Over and over, our grantees found that ODLs bring a new and important dimension to the health care matrix. I think ODLs are going to be an elemental part of health care in the 21st century and they’ll be much more than data points in a health record. ODLs will be part of a new model for health care, one that puts the patient front and center in the clinician-patient relationship.

I’ve been a researcher for many years, but first and foremost I’m a nurse. Patients are my top concern. While shepherding the project’s grantee teams I’ve heard dozens of stories from patients who describe how folding ODLs into their health information has enhanced their lives and changed the way they think about their health. Their stories have become my story. Here is just one:

“Jane” is a 30-something female with Crohn’s disease, a chronic and debilitating condition that’s difficult to treat. As part of Project HealthDesign’s Chronology.MD study, Jane was trained to use a mobile device to record ODLs relevant to her condition, and then work with her provider to interpret them and adjust treatment accordingly. Using this approach, she saw significant improvement in her condition, and her ability to manage it. “Can the study go longer than 6 months?” she wrote. “Because I am finding this very useful. As a result of sharing this data, I have changed the meds that I was on. My quality of life has gone way up.” Jane’s condition improved to the point where she no longer needed IV medications, and managed her pain with diet and exercise. “Besides, my doctor told me that my blood levels are the best they have been in years.”

Real words from a real patient—one of many patients whose lives have been enhanced by PHD, all because RWJF had the foresight to step outside the 20th century health care paradigm and fund the exploration of a new approach.

I am thrilled to have been part of this effort. With new technologies, excellent science, and the vision of RWJF, we’re on the brink of a long overdue shift in our approach to modern health care. This new approach will bring the patient’s voice into the medical conversation. Ultimately, I hope it will alter the clinical work flow and allow patients and clinicians to cooperate on equal ground.