Consumers continue to be frustrated with lack of access to their healthcare data, even as wearables and other consumer-targeted devices and services continue to sprout. Recently, ONC launched a Consumer Health Data Aggregator Challenge to spur the development of new applications and partnerships to provide aggregated health data to patients. While the financial “prize” for this effort is meager, recognition by ONC might be the real brass ring. This challenge focuses on the use of FHIR exclusively to support interoperability between systems and present data to consumers. I suspect that applicants will have some trouble meeting the requirements of the challenge effectively, and this is indicative of the broader challenge in supporting this type of data access.
In an earlier post I wondered whether public health’s siloed systems might not be more appropriately thought of as siloed data. But after attend a meeting of the Joint Public Health Informatics Taskforce (JPHIT) I am wondering whether the issue is really siloed workflow.
In public health, data is used to support specific programs, and systems develop to provide a means to collect, analyze, and disseminate this data. Individuals in the programs define the data sets and create systems that support specific protocols and activities that are considered unique to the program area. This is often the result of increased specialization in both the clinical and epidemiological practice and can result in processes that are at their core quite similar being described in diverse ways. Data definitions, codes and terminology sets often also evolve in a divergent way when often they are describing the same qualities or attributes, often about the same patients, conditions, or environment.
Public health agencies need to focus on the commonalities across their programs rather than on the differences. Existing and emerging standards activities should help promote a convergence of systems, data, and workflow to increase interoperability, reduce redundancy, and promote sharable, reusable, cheaper system components. As collaboration among programs and agencies moves some implementations to shared solutions or cloud-based implementations, public health needs to be careful not to create a set of siloed platforms that provide parallel, non-interoperating services to the same agencies.
Categorical funding, insufficient resources, and lack of agency vision keep public health systems isolated and unintegrated – a phenomenon often referred to as “siloed” systems. In a 2007 white paper on the Evolution of Public Health Information Systems I argued that public health agencies needed to think about enterprise-wide systems integration, and several models from distributed, to cooperative, to more centralized were offered for consideration. More recently the action has shifted to interoperable systems (see both the ONC Nationwide Interoperability Roadmap, and my reaction to it in The Interoperability of Things). Interoperability focuses more on the implementation of standards that permit data to flow between systems rather than on combining disparate systems into larger objects to facilitate data sharing.
While this distinction between system integration and system interoperability does have implications for system architects, at the end of the day users are concerned about data. It is more important to focus on siloed data rather than siloed systems as a way to break the impasse that often arises when an agency tries to improve its operational or analytical capabilities. Agencies should consider many different strategies – system redesign, Commercial and Government off-the-shelf (COTS/GOTS) solutions, Master Data Management (MDM) strategies, service-oriented architecture (SOA), Open Source components – but always focus on the impact on the user and ultimately on the user’s experience. And of course as time goes on agencies will want to exchange data with systems outside of public health more and more which requires even more flexibility.
Two new articles written by Dr. Noam Arzt, President of HLN, have been published in the most recent (Fall 2015 – just published now) issue of the HIMSS Journal of Health Information Management:
- The Interoperability of Things is an essay about the state of health data interoperability in the US and it grew largely out Dr. Arzt’s experience working on the ONC Nationwide Interoperability Roadmap.
- Fighting Information Blocking in the Emerging Learning Health System is a feature article offering perspectives on the emerging issue of “information blocking.”