2013 Annual Health Policy Invitational Meeting

This event is by invitation only.

Advancing Patient Centered Care, Collaboration, Communication, and Coordination

The goal of AMIA’s 2013 Health Policy Meeting is to develop recommendations on updates to current policies and establish a research agenda in order to further a national understanding of how the future state of health, wellness, and care will increasingly include the active participation of patients, families, and caregivers through data use, re-use, stewardship and governance in the delivery and management of patient-centered care; and to address the informatics-related challenges posed by the sharing and management of both clinician- and patient-generated health data.

Meeting Materials

2013 AMIA Policy Invitational - Patient-Centered Care, Collaboration, Communication and Coordination from AMIA on Vimeo.

Focus and Objectives:

We are entering into an era of accountable care where the delivery of that care will ride on streams of data emanating from and flowing freely among households, hospitals, hospices, schools, clinics, and beyond. An increasingly significant contributor to this data flow will be patient-defined and patient-generated data. Data will be generated, collected, and transmitted to and from a wide variety of electronic systems such as registries, embedded and mobile devices, wearable sensors, and “smart” objects. Effective use of this free-flowing and increasingly granular and complex data—including clinical histories, genomic data, and care delivery process data—will require public policies that support and ensure the availability and integrity of the data and its use in health and health care decisions and judgments—no matter where or when they occur. The blurring of lines between population and public health and between research and care delivery—along with the tangling of “consumer-facing “ health devices with “personalized care” delivery—have made it more important than ever to ensure the availability, accessibility and integrity of these new data streams.

Increasingly, the health data ecosystem goes far beyond discussions about electronic and personal health records (EHRs and PHRs). Individuals now play a more active role in their own health and health care. Care coordination (often among many providers and specialties) and care transitions (when patients move from one care setting to another) can be challenging for providers as well as patients and their caregivers. Promoting health and wellbeing among an aging, diverse, and geographically dispersed population requires new approaches, tools, and workflows to ensure care, prevention, and treatment. In the future, it is likely that social, cultural, and environmental factors (and data) will be especially relevant.

The data collection mechanisms supporting patient-centered care will need to be as diverse as the patient population, including non-traditional collection processes. If we are to successfully deliver data-driven, patient-centered care in this environment, the ever-increasing volumes of data will need mechanisms of validation that go beyond provider-centric methods and include participatory health records and real-time transparency akin to what we experience in a drive-thru where our orders are displayed as we make them. We need a rational data framework for handling all of these points of data collection, validation, management and presentation. As these mechanisms evolve, the current terms and buzzwords such as “consumer engagement,” “learning healthcare system,” and “shared decision-making” seem confusing at best and perhaps even unachievable given the ongoing challenges and limitations of the current system. The Invitational will seek to define these challenges more concretely and propose realistic approaches to addressing them at a policy and research level.

2013 invitees will participate in focused and thought-provoking discussions that will weigh the various factors that impact the formulation of a national policy and research agenda around the role of biomedical and health informatics in delivering patient-centered care and advance our understanding of how and why data are collected. The 2013 AMIA policy meeting will take us beyond HIPAA, the Common Rule, and current HIT-related undertakings (such as those by the ONC, CMS and the FDA) and will focus on the policies that support informatics innovations to propel and enable patient-centered care, patient self-management, and high levels of public health.

Anticipated outcomes and/or work products from the meetings include the following:

  • Development of informatics-enabled, policy-informing, and research-oriented recommendations on furthering patient-centered care, coordination, communications and collaboration related to data quality; security and integrity; data sharing and stewardship; and inter-professional education and certification policies
  • A discussion of mechanisms for the effective acquisition and meaningful integration of patient-generated data with clinically sourced information in all phases of the care process
  • A summary report with recommendations; a short-range action/research plan (2-3 years) that can be pursued by the participants and other stakeholders in order to address the issues; and one or more manuscripts suitable for submission to JAMIA or elsewhere
  • A report of the meeting

About the AMIA Invitational Policy Meeting

Since 2006, AMIA has convened an Invitational Health Policy Meeting to examine the cutting-edge issues in health care and health IT policy from diverse perspectives, air potential challenges and solutions, and offer robust public policy and research-oriented discourse. These meetings are intended to be forward-looking and policy-informing. The overarching objectives are to identify potential future issues, especially those related to the convergence of health IT, clinical technologies, devices, innovations, and communications capabilities; determine areas for further study and research; and develop objective reports synthesizing conference outcomes to inform policymakers about the issues discussed and potential next steps.

The 2013 Policy Invitational will build on AMIA’s prior work and initiatives established in the 2012 Invitational, which sought to develop and advance a data management model that recognized healthcare data as an organizational, enterprise-wide asset, and a critical resource in the transformation of healthcare.