Identifying the capabilities for creating next-generation registries: a guide for data leaders and a case for "registry science".

OBJECTIVE: The increasing demands for curated, high-quality research data are driving the emergence of a novel registry type. The need to assemble, curate, and export this data grows, and the conventional simplicity of registry models is driving the need for advanced, multimodal data registries-the dawn of the next-generation registry. MATERIALS AND METHODS: The article provides an outline of the technology roles and responsibilities needed for successful implementations of next-generation registries. RESULTS: We propose a framework for the planning, construction, maintenance, and sustainability of this new registry type. DISCUSSION: A rubric of organizational, computational, and human resource needs is discussed in detail, backed by over 40 years of combined in-the-field experiences by the authors. CONCLUSIONS: A novel field, registry science, within the clinical research informatics domain, has arisen to offer its insights into conceiving, structuring, and sustaining this new breed of tools.

A framework for systematic evaluation of health information infrastructure progress in communities.

It is widely agreed that major improvements in the safety, quality, and efficiency of health care in the US require a National Health Information Infrastructure. To accomplish this, efforts are now underway in many communities to build local or regional health information infrastructures (HIIs) that provide secure, ubiquitous access to complete health care information. To facilitate the assessment and monitoring of the progress of operational HIIs toward completion, we propose a framework of four key measures of requirements that must be ultimately be met: (1) completeness of information, (2) degree of usage, (3) types of usage, and (4) financial sustainability. To evaluate the framework, it was used by the authors to qualitatively assess HII projects in cooperation with four leading communities, resulting in ratings of 78% for Bellingham, WA, 63% for Indianapolis, IN, 60% for South Bend, IN, and 74% for Spokane, WA. Qualitative assessment of community HII systems may be helpful in monitoring progress, comparing projects, and understanding the remaining tasks needed for completion. Additional testing and refinement of the proposed framework is needed to further understand and improve HII progress measurement capabilities.

Who Watches the Watchers. Working Towards Safety for EHR Knowledge Resources.

The rise in the use of electronic health records (EHRs) and associated resources over the last decade is leading to the end of the paper medical record and all the risks associated with the use of a paper chart. However, there has not been a concomitant creation of a systematic oversight body that is specifically charged with ensuring the public's safety through the use of EHR knowledge resource tools or EHRs themselves. We recommend the formation a Health Information Technology Safety Center. Such a center could collect error reports, review EHRs and the knowledge resources incorporated within them, and investigate particularly challenging EHR-related safety issues at participating health care delivery organizations. Safety issues could be identified, corrected, and the solutions widely disseminated.