Towards a Person-Centered Integrated Care, Research, Wellness, and Community Ecosystem – A White Paper of the 2017 AMIA Policy Invitational
Information Technology (IT) and data have become central components in managing the health of individuals, groups, and populations. However, the primary model for healthcare information technology (health IT) today is institution-focused, deployed around narrow use cases, and most often focused on the resolution or management of acute or chronic illness, rather than the promotion and maintenance of health and wellbeing. This model has resulted in innumerable data silos, which are divorced from the way patients, their families, and their caregivers wish to maintain health and wellness, experience care delivery, participate in research, and contribute to and benefit from their communities.
Despite recent advances, the current picture provided by health IT remains analogous to early instant photographs: grainy, blurry, rarely taken, easily smudged, susceptible to misrepresentation, and representative of but a single moment in time. While the digitization of care, through the deployment of electronic health records (EHRs) and personal health records (PHRs) across the country has improved the resolution of our picture, we are still far from the high-definition, focused, three-dimensional pictures of health to which we aspire.
The 2017 AMIA Policy Invitational (API17) set out to Redefine Our Picture of Health, through the lens of patients and families, rather than those of provider institutions, payers, and health IT vendors. Below is a brief overview of the topics, conversations, findings, and recommendations that emerged during the day-and-a-half in-person meeting. Key recommendations emerged in the areas of “Consumer- & User-Centered Regulatory Environment,” “Person-Centered Inputs and Person-Driven Outputs,” and “Integrative and Inclusive Policy Development & Planning.”