Developing Governance for Federated Community-based EHR Data Sharing.

Bi-directional translational pathways between scientific discoveries and primary care are crucial for improving individual patient care and population health. The Data QUEST pilot project is a program supporting data sharing amongst community based primary care practices and is built on a technical infrastructure to share electronic health record data. We developed a set of governance requirements from interviewing and collaborating with partner organizations. Recommendations from our partner organizations included: 1) partner organizations can physically terminate the link to the data sharing network and only approved data exits the local site; 2) partner organizations must approve or reject each query; 3) partner organizations and researchers must respect local processes, resource restrictions, and infrastructures; and 4) partner organizations can be seamlessly added and removed from any individual data sharing query or the entire network.

LC Data QUEST: A Technical Architecture for Community Federated Clinical Data Sharing.

The University of Washington Institute of Translational Health Sciences is engaged in a project, LC Data QUEST, building data sharing capacity in primary care practices serving rural and tribal populations in the Washington, Wyoming, Alaska, Montana, Idaho region to build research infrastructure. We report on the iterative process of developing the technical architecture for semantically aligning electronic health data in primary care settings across our pilot sites and tools that will facilitate linkages between the research and practice communities. Our architecture emphasizes sustainable technical solutions for addressing data extraction, alignment, quality, and metadata management. The architecture provides immediate benefits to participating partners via a clinical decision support tool and data querying functionality to support local quality improvement efforts. The FInDiT tool catalogues type, quantity, and quality of the data that are available across the LC Data QUEST data sharing architecture. These tools facilitate the bi-directional process of translational research.

Facilitating health data sharing across diverse practices and communities.

Health data sharing with and among practices is a method for engaging rural and underserved populations, often with strong histories of marginalization, in health research. The Institute of Translational Health Sciences, funded by a National Institutes of Health Clinical and Translational Science Award, is engaged in the LC Data QUEST project to build practice and community based research networks with the ability to share semantically aligned electronic health data. We visited ten practices and communities to assess the feasibility of and barriers to developing data sharing networks. We found that these sites had very different approaches and expectations for data sharing. In order to support practices and communities and foster the acceptance of data sharing in these settings, informaticists must take these diverse views into account. Based on these findings, we discuss system design implications and the need for flexibility in the development of community-based data sharing networks.

Telepsychiatry with rural American Indians: issues in civil commitments.

The use of live interactive videoconferencing to provide psychiatric care, telepsychiatry, has particular relevance for improving mental health treatment to rural American Indian reservations. There is little literature on civil commitments in telepsychiatry and none specifically addressing this topic among American Indians. This article reviews telepsychiatry in the mental health care of American Indians, civil commitments and telepsychiatry in general, and the current state of civil commitments in American Indian communities. We conclude by considering commitment through telepsychiatry in rural reservations and offering guidelines to assist practitioners in navigating this challenging landscape. Civil commitments of American Indian patients residing in rural reservations can be successfully accomplished through videoconferencing by thoughtful and informed clinicians. However, much more work is needed in this area, including research into the cultural attitudes and perspectives towards commitments and further inquiry regarding potential legal precedents, as well as case reports and examples of this work.