Person:

Ramoni, Rachel B.

Few oral health databases are available for research and the advancement of evidence-based dentistry. In this work we developed a centralized data repository derived from electronic health records (EHRs) at four dental schools participating in the Consortium of Oral Health Research and Informatics. A multi-stakeholder committee developed a data governance framework that encouraged data sharing while allowing control of contributed data. We adopted the i2b2 data warehousing platform and mapped data from each institution to a common reference terminology. We realized that dental EHRs urgently need to adopt common terminologies. While all used the same treatment code set, only three of the four sites used a common diagnostic terminology, and there were wide discrepancies in how medical and dental histories were documented. BigMouth was successfully launched in August 2012 with data on 1.1 million patients, and made available to users at the contributing institutions.

Background and objective Upgrades to electronic health record (EHR) systems scheduled to be introduced in the USA in 2014 will advance document interoperability between care providers. Specifically, the second stage of the federal incentive program for EHR adoption, known as Meaningful Use, requires use of the Consolidated Clinical Document Architecture (C-CDA) for document exchange. In an effort to examine and improve C-CDA based exchange, the SMART (Substitutable Medical Applications and Reusable Technology) C-CDA Collaborative brought together a group of certified EHR and other health information technology vendors. Materials and methods We examined the machine-readable content of collected samples for semantic correctness and consistency. This included parsing with the open-source BlueButton.js tool, testing with a validator used in EHR certification, scoring with an automated open-source tool, and manual inspection. We also conducted group and individual review sessions with participating vendors to understand their interpretation of C-CDA specifications and requirements. Results: We contacted 107 health information technology organizations and collected 91 C-CDA sample documents from 21 distinct technologies. Manual and automated document inspection led to 615 observations of errors and data expression variation across represented technologies. Based upon our analysis and vendor discussions, we identified 11 specific areas that represent relevant barriers to the interoperability of C-CDA documents. Conclusions: We identified errors and permissible heterogeneity in C-CDA documents that will limit semantic interoperability. Our findings also point to several practical opportunities to improve C-CDA document quality and exchange in the coming years.

Purpose Whether and how to return individual genetic results to study participants is among the most contentious policy issues in contemporary genomic research. Methods: We surveyed corresponding authors of genome-wide association studies (GWAS), identified through the National Human Genome Research Institute's Catalog of Published GWAS, to describe the experiences and attitudes of these stakeholders. Results: Of 357 corresponding authors, 200 (56%) responded. One hundred twenty-six (63%) had been responsible for primary data and sample collection, whereas 74 (37%) had performed secondary analyses. Only 7 (4%) had returned individual results within their index GWAS. Most (69%) believed that return of results to individual participants was warranted under at least some circumstances. Most respondents identified a desire to benefit participants's health (63%) and respect for participants's; desires for information (57%) as major motivations for returning results. Most also identified uncertain clinical utility (76%), the possibility that participants will misunderstand results (74%), the potential for emotional harm (61%), the need to ensure access to trained clinicians (59%), and the potential for loss of confidentiality (51%) as major barriers to return. Conclusion: Investigators have limited experience returning individual results from genome-scale research, yet most are motivated to do so in at least some circumstances.

Abstract Objective: Secondary data are a significant resource for in‐depth epidemiologic and public health research. It also allows for effective quality control and clinical outcomes measurement. To illustrate the value of structured diagnostic entry, a use case was developed to quantify adherence to current practice guidelines for managing chronic moderate periodontitis (CMP). Methods: Six dental schools using the same electronic health record (EHR) contribute data to a dental data repository (BigMouth) based on the i2b2 data‐warehousing platform. Participating institutions are able to query across the full repository without being able to back trace specific data to its originating institution. At each of the three sites whose data are included in this analysis, the Dental Diagnostic System (DDS) terminology was used to document diagnoses in the clinics. We ran multiple queries against this multi‐institutional database, and the output was validated by manually reviewing a subset of patient charts. Results: Over the period under study, 1,866 patients were diagnosed with CMP. Of these, 15 percent received only periodontal prophylaxis treatment, 20 percent received only periodontal maintenance treatment, and only 41 percent received periodontal maintenance treatment in combination with other AAP guideline treatments. Conclusions: Our results showed that most patients with CMP were not treated according to the AAP guidelines. On the basis of this use case, we conclude that the availability and habitual use of a structured diagnosis in an EHR allow for the aggregation and secondary analyses of clinical data to support downstream analyses for quality improvement and epidemiological assessments.