A Governance Framework to Integrate Longitudinal Clinical and Community Data in a Distributed Data Network: The Childhood Obesity Data Initiative.

CONTEXT: Integrating longitudinal data from community-based organizations (eg, physical activity programs) with electronic health record information can improve capacity for childhood obesity research. OBJECTIVE: A governance framework that protects individual privacy, accommodates organizational data stewardship requirements, and complies with laws and regulations was developed and implemented to support the harmonization of data from disparate clinical and community information systems. PARTICIPANTS AND SETTING: Through the Childhood Obesity Data Initiative (CODI), 5 Colorado-based organizations collaborated to expand an existing distributed health data network (DHDN) to include community-generated data and assemble longitudinal patient records for research. DESIGN: A governance work group expanded an existing DHDN governance infrastructure with CODI-specific data use and exchange policies and procedures that were codified in a governance plan and a delegated-authority, multiparty, reciprocal agreement. RESULTS: A CODI governance work group met from January 2019 to March 2020 to conceive an approach, develop documentation, and coordinate activities. Governance requirements were synthesized from the CODI use case, and a customized governance approach was constructed to address governance gaps in record linkage, a procedure to request data, and harmonizing community and clinical data. A Master Sharing and Use Agreement (MSUA) and Memorandum of Understanding were drafted and executed to support creation of linked longitudinal records of clinical- and community-derived childhood obesity data. Furthermore, a multiparty infrastructure protocol was approved by the local institutional review board (IRB) to expedite future CODI research by simplifying IRB research applications. CONCLUSION: CODI implemented a clinical-community governance strategy that built trust between organizations and allowed efficient data exchange within a DHDN. A thorough discovery process allowed CODI stakeholders to assess governance capacity and reveal regulatory and organizational obstacles so that the governance infrastructure could effectively leverage existing knowledge and address challenges. The MSUA and complementary governance documents can inform similar efforts.

The Childhood Obesity Data Initiative: A Case Study in Implementing Clinical-Community Infrastructure Enhancements to Support Health Services Research and Public Health.

CONTEXT: We describe a participatory framework that enhanced and implemented innovative changes to an existing distributed health data network (DHDN) infrastructure to support linkage across sectors and systems. Our processes and lessons learned provide a potential framework for other multidisciplinary infrastructure development projects that engage in a participatory decision-making process. PROGRAM: The Childhood Obesity Data Initiative (CODI) provides a potential framework for local and national stakeholders with public health, clinical, health services research, community intervention, and information technology expertise to collaboratively develop a DHDN infrastructure that enhances data capacity for patient-centered outcomes research and public health surveillance. CODI utilizes a participatory approach to guide decision making among clinical and community partners. IMPLEMENTATION: CODI's multidisciplinary group of public health and clinical scientists and information technology experts collectively defined key components of CODI's infrastructure and selected and enhanced existing tools and data models. We conducted a pilot implementation with 3 health care systems and 2 community partners in the greater Denver Metro Area during 2018-2020. EVALUATION: We developed an evaluation plan based primarily on the Good Evaluation Practice in Health Informatics guideline. An independent third party implemented the evaluation plan for the CODI development phase by conducting interviews to identify lessons learned from the participatory decision-making processes. DISCUSSION: We demonstrate the feasibility of rapid innovation based upon an iterative and collaborative process and existing infrastructure. Collaborative engagement of stakeholders early and iteratively was critical to ensure a common understanding of the research and project objectives, current state of technological capacity, intended use, and the desired future state of CODI architecture. Integration of community partners' data with clinical data may require the use of a trusted third party's infrastructure. Lessons learned from our process may help others develop or improve similar DHDNs.

An Assessment of Information Exchange Practices, Challenges, and Opportunities to Support US Disease Surveillance in 3 States.

BACKGROUND: State and local public health agencies collect and use surveillance data to identify outbreaks, track cases, investigate causes, and implement measures to protect the public's health through various surveillance systems and data exchange practices. PURPOSE: The purpose of this assessment was to better understand current practices at state and local public health agencies for collecting, managing, processing, reporting, and exchanging notifiable disease surveillance information. METHODS: Over an 18-month period (January 2014-June 2015), we evaluated the process of data exchange between surveillance systems, reporting burdens, and challenges within 3 states (California, Idaho, and Massachusetts) that were using 3 different reporting systems. RESULTS: All 3 states use a combination of paper-based and electronic information systems for managing and exchanging data on reportable conditions within the state. The flow of data from local jurisdictions to the state health departments varies considerably. When state and local information systems are not interoperable, manual duplicative data entry and other work-arounds are often required. The results of the assessment show the complexity of disease reporting at the state and local levels and the multiple systems, processes, and resources engaged in preparing, processing, and transmitting data that limit interoperability and decrease efficiency. CONCLUSIONS: Through this structured assessment, the Centers for Disease Control and Prevention (CDC) has a better understanding of the complexities for surveillance of using commercial off-the-shelf data systems (California and Massachusetts), and CDC-developed National Electronic Disease Surveillance System Base System. More efficient data exchange and use of data will help facilitate interoperability between National Notifiable Diseases Surveillance Systems.

A Community Health Record: Improving Health Through Multisector Collaboration, Information Sharing, and Technology.

We present a framework for developing a community health record to bring stakeholders, information, and technology together to collectively improve the health of a community. It is both social and technical in nature and presents an iterative and participatory process for achieving multisector collaboration and information sharing. It proposes a methodology and infrastructure for bringing multisector stakeholders and their information together to inform, target, monitor, and evaluate community health initiatives. The community health record is defined as both the proposed framework and a tool or system for integrating and transforming multisector data into actionable information. It is informed by the electronic health record, personal health record, and County Health Ranking systems but differs in its social complexity, communal ownership, and provision of information to multisector partners at scales ranging from address to zip code.

Characterization of public health alerts and their suitability for alerting in electronic health record systems.

Public health agencies including federal, state, and local governments routinely send out public health advisories and alerts via e-mail and text messages to health care providers to increase awareness of public health events and situations. Agencies must ensure that practitioners have timely and accessible information at the critical point-of-care. Electronic health record (EHR) systems have the potential to alert physicians of emerging health conditions deemed important for public health at the most critical time of need. To understand how public health agencies can leverage existing alerting mechanisms in EHR systems, it is important to understand characteristics of public health alerts to determine their suitability for alerting in EHR systems. Authors conducted a review and analysis of public health alerts for a 3-year period to identify critical data attributes necessary to support public health alerting in EHR systems. The alerts were restricted to those most relevant for clinical care. The results showed that there is an opportunity for disseminating actionable information to clinical practitioners at the point of care to guide care and reporting. Public health alerts in EHR systems can be useful in reporting, recommending specific tests, as well as suggesting secondary prevention.

Using computerized clinical decision support for latent tuberculosis infection screening.

BACKGROUND: The Centers for Disease Control and Prevention (CDC) has published guidelines recommending screening high-risk groups for latent tuberculosis infection (LTBI). The goal of this study was to determine the impact of computerized clinical decision support and guided web-based documentation on screening rates for LTBI. DESIGN: Nonrandomized, prospective, intervention study. SETTING AND PARTICIPANTS: Participants were 8463 patients seen at two primary care, outpatient, public community health center clinics in late 2002 and early 2003. INTERVENTION: The CDC's LTBI guidelines were encoded into a computerized clinical decision support system that provided an alert recommending further assessment of LTBI risk if certain guideline criteria were met (birth in a high-risk TB country and aged <40). A guided web-based documentation tool was provided to facilitate appropriate adherence to the LTBI screening guideline and to promote accurate documentation and evaluation. Baseline data were collected for 15 weeks and study-phase data were collected for 12 weeks. MAIN OUTCOME MEASURES: Appropriate LTBI screening according to CDC guidelines based on chart review. RESULTS: Among 4135 patients registering during the post-intervention phase, 73% had at least one CDC-defined risk factor, and 610 met the alert criteria (birth in a high-risk TB country and aged <40 years) for potential screening for LTBI. Adherence with the LTBI screening guideline improved significantly from 8.9% at baseline to 25.2% during the study phase (183% increase, p < 0.001). CONCLUSIONS: This study demonstrated that computerized, clinical decision support using alerts and guided web-based documentation increased screening of high-risk patients for LTBI. This type of technology could lead to an improvement in LTBI screening in the United States and also holds promise for improved care for other preventive and chronic conditions.

An informatics solution for informing care delivery of immediate public health risks to their patients.

This paper describes a public health alerting approach that has the potential to improve patient care during a public health outbreak and reduce healthcare costs, streamline the process of public health alert management and dissemination, and heighten the crucial feedback loop between public health officials and clinicians. The approach ties public health alerts into the diagnostic process and allows clinicians to more easily determine when an observed medical condition may be related to a more widespread disease outbreak. A prototype Alert Knowledge Repository (AKR) service using this approach was demonstrated within the Health Information and Management Systems Society (HIMSS) and the Public Health Information Network (PHIN) interoperability showcases in April and September 2009, respectively.

Disseminating public health practice guidelines in electronic medical record systems.

An evaluation of public health practice guidelines published by CDC was conducted to determine the feasibility of disseminating them through electronic medical record (EMR) systems. Of 1,069 guidelines evaluated, 360 contained at least one recommendation that could be presented as an alert or reminder to the clinician during the patient encounter. These guidelines were in the areas of: HIV (59), sexually transmitted diseases (8), health care associated infections (14), tuberculosis (TB) (25), immunizations/vaccine-preventable diseases (80), other infectious diseases (134), reproductive health diseases (8), cancers (9), diabetes (5), and other chronic diseases (18). Further efforts to disseminate CDC guidelines through EMR systems are in progress.

Emergency implementation of knowledge management system to support a bioterrorism response.

In a public health emergency, it becomes necessary for public health agencies to provide timely, accurate and useful information to the community. During the anthrax attacks, the Public Health Practice Program Office in the Centers for Disease Control and Prevention implemented a knowledge management (KM) system to respond to an increased number of inquiries from public health officials, first responders, and health care professionals as well as the general public. While it is possible to successfully implement a knowledge management system quickly in a crisis situation, additional challenges to sustainability may result from shortchanging the normal decision-making channels.

Encoded guidelines for targeted latent tuberculosis screening using an electronic medical record.

To determine the impact of information technology on embedding the latent tuberculosis infection (LTBI) screening guidelines in an electronic medical record (EMR) in a large health care system. The long-term goal of the study is to test clinician adherence to LTBI screening guidelines using an EMR system. However, preliminary results are presented on the potential impact on providers on implementing the alerts on targeted high-risk patients.