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Health informatics experts offer policy recommendations to facilitate a more person-centered and integrated care, research, wellness, and community ecosystem

BETHESDA, MD — The American Medical Informatics Association (AMIA) released a new white paper that emerged from the 2017 AMIA Policy Invitational (API17). The paper details a new set of policy principles and framework meant to address cross-cutting issues identified by API17 participants and to encourage a more unified care, research, wellness, and community ecosystem. “Redefining Our Picture of Health: Towards a Person-Centered Integrated Care, Research, Wellness, and Community Ecosystem” includes a set of draft recommendations that highlight ways in which the federal government can facilitate this ecosystem.

The current model for healthcare information technology (health IT) 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) 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.

In September 2017, AMIA convened approximately 80 informatics professionals, policy experts, patient advocates, health IT industry advisors, and other invited guests to participate in a day-and-a-half meeting to develop policy recommendations that promote patient-centeredness and the integration of the often-siloed domains of care, research, wellness and community.

Prior to the meeting, participants reviewed personas and scenarios developed by AMIA’s Policy Invitational Planning Committee and API17’s sponsor, The Commonwealth Fund. The illustrative personas and scenarios represented experiences related to care, research, wellness, and community, set approximately five to 10 years in the future. In considering the gaps between the current and idealized future state of patient- and family-centered care, research, wellness, and community, participants identified seven cross-cutting issues:

  • Data Standards
  • Data Governance & Ethics
  • Data Sources Across Home & Community
  • Participatory Methods & Citizen Science
  • Outcome Measures
  • Trust & Transparency
  • Supporting Diverse People

“Our experience in looking through a future-tense lens of wellbeing for the whole person, in the context of their family and community’s health, supported us to develop policy principles and recommendations for the health data infrastructure and ecosystem we envision, far beyond the traditional health/illness context,” said API17 Chair Susan Hull, MSN, RN-BC, NEA-BC.

Meeting participants developed policy recommendations to address these issues, which the white paper authors reorganized into a new policy framework. Underlying this framework is a set of guiding principles that are meant to inform deliberations over development of the person-centered informatics infrastructure and data ecosystem which API17 sought to envision:

  • Partnership
  • Individual Control
  • Transparency
  • Data as a Social Good
  • Diversity

“As we can see from the involvement of consumer giants like Apple, Inc., in the healthcare space, we are at or very close to the tipping point where patients and health care professionals become co-producers in the healthcare data ecosystem,” said API17 Vice Chair Jeremy Warner, MD, MS. “This is the time to lay out clear and crisp policies to ensure that data ownership is clearly delineated, that data production is equitable, and that research can benefit from motivated and technology-enabled participants.”

Specific policy recommendations organized under the framework include:

  • A public-private collaborative should develop an infrastructure and governance framework that (1) recognizes the diverse and proliferating data from home to community sources and that (2) provides mechanisms for data source identification, registration, and production of relevant metadata for the appropriate re-use of such data. Experience with implementation of a national Unique Device Identifier ecosystem could inform this effort, and its application to mHealth and other software data should be explored.
  • Federal funding agencies and programs should develop new participatory research methods that engage and empower community members as citizen scientists and active members of community health governing bodies and patient advisory councils.
  • Federal Agencies should identify ways to balance the allocation of resources to health, recognizing the influence social, economic, and environmental risk factors have as predictors of health disparities at both the individual and community level. They should enable and fund a distributed, open infrastructure that supports shared access to community-and regional-based social and behavioral determinants of health data to impact care, research, wellness, and community outcomes.

“We believe that the patient should always be the guiding star in the development and refinement of health informatics policy,” said AMIA President and CEO Douglas B. Fridsma, MD, PhD, FACP, FACMI. “The recommendations that emerged from this Policy Invitational are just some of many potential actions the federal government could take to enhance the role of the patient.”

The API17 Chair and Vice Chair will be presenting the findings from “Redefining Our Picture of Health” in more detail during an AMIA webinar on March 1 at 2:00 p.m. ET. Registration is free for AMIA members.


AMIA, the leading professional association for informatics professionals, is the center of action for 5,500 informatics professionals from more than 65 countries. As the voice of the nation’s top biomedical and health informatics professionals, AMIA and its members play a leading role in assessing the effect of health innovations on health policy, and advancing the field of informatics. AMIA actively supports five domains in informatics: translational bioinformatics, clinical research informatics, clinical informatics, consumer health informatics, and public health informatics.