“Redefining our Picture of Health”
How Data is Transforming the Role of Patients in Care & Research
Meeting Summary: For the last several years, new and novel types of data have begun to sharpen (and in some cases) redefine the picture of a patient’s health.
- The adoption of EHRs and other health IT in care delivery has dramatically increased the amount of health data and information available to describe patients’ health;
- The addition of rich contextual data about patients – and by patients – including environmental, geographic, behavioral, and genomics are adding digital definition to patients’ stories;
- Development and expansion of mobile health applications are adding various kinds of wellness data to the already complex domain of clinical data, and offering new methods for patient empowerment and participation in care and research; and
- Advances in basic and clinical research, with high throughput computing and processing, have enabled a single patient’s picture of health to inform the pictures of many patients’ health.
These trends are converging to deliver a more refined picture of health, where personalized care can deliver treatments tailored to the individual, where a single patient can inform and improve the health of populations, and where the "N-of-Many" can be leveraged to better understand the "N-of-1." The focus for API2017 will be on health informatics policies needed to support this emerging paradigm.
Meeting Process & Outputs: The two-day meeting will begin with a clear articulation of the delta between the current and idealized future state of patient- and family-centered health, care, research, and community. Barriers to idealized scenarios describing how patients want to maintain health & wellness, interact with care delivery, participate in research, and contribute to healthy communities will be identified before the meeting. Keynotes and panels will provide context along these threads, followed by participant Q&A and breakout sessions where attendees engage in a discussion of relevant policies and policy gaps. The final product will be consensus action-items and policy recommendations that will empower patients and families in this new paradigm. These recommendations will be presented to Congress and the public during a November 9, 2017 event on Capitol Hill.
Planning Committee Chair: Susan Hull, Chief Nurse Informatics Officer, Assistant VP, Division of Patient Services, Cincinnati Children’s Hospital
Planning Committee Vice-Chair: Jeremy Warner, Assistant Professor of Medicine and Biomedical Informatics at Vanderbilt University Medical Center