All across the country, health and human services programs are making connections to provide more coordinated approaches to improving health and well-being in their communities. Many of these efforts involve information-sharing about the people being served – whether through public health clinics and school systems or with government cash and food assistance.
While there are many benefits of information-sharing among these organizations, it can be a complicated undertaking given the host of technical issues relating to the governance, structure, and flow of data; confidentiality and privacy protections; legal and regulatory restrictions; and organizational opposition for proprietary or other reasons.
As a part of our work with the National Interoperability Collaborative, we recently reviewed technical documents and toolkits that provide guidance about how to (a) overcome some of these barriers and (b) advance interoperability, which we define as the ability to collect, review, share, and use information seamlessly across organizations and systems. You can read the full scan report, From Siloes to Solutions: Getting to Interoperability in Health and Human Services, here.
What we found was almost as interesting as what we didn’t.
What We Found
- Most guidance focuses on systems integration and technical infrastructure.
All of the resources we reviewed, from emergency response to energy to health sectors, provided guidance around systems integration and technical infrastructure. Within this broad component of interoperability, two-thirds of the literature we reviewed emphasized or mentioned the importance of interoperability standards, aimed at ensuring that – despite differences among systems – relevant information is structured or can be restructured to fit a specific, common format so that it is readable and usable by other systems.
- Guidance around governance, organizational capacity, and readiness is the most specific.
Documents addressing these components of interoperability provided examples of data use and data-sharing agreements, as well as best practices and guidelines about establishing governance protocols. In regard to organizational capacity and readiness, some documents provided decision-making models to understand which standards were worth adopting. One resource also discussed members of leadership who should be at the table to accelerate progress.
- The health sector contributed the most guidance, followed by the emergency response sector.
The large amount of guidance from the health sector is unsurprising given the heavy federal investments in health information infrastructure over the last decade. The guidance from the emergency response sector emphasized behavior and workflow change management, as well as sustainability. Even though relatively few education documents met our inclusion criteria, those we did review had rich information that was applicable across most of the key components we coded, with the exception of behavior and workflow change management. The same was true of documents from the human services sector, which covered almost all of the key components of interoperability, with the exception of sustainability.
What We Didn’t
- A relatively small number of documents mentioned sustainability, trust or shared values.
Only three sectors – health, education, and emergency response – mentioned sustainability in their guidance. However, those that did emphasized the need to build in plans for continued financing or funding as part of long-term strategy. Consideration of sustainable financing is necessary not only for building and maintaining the technical infrastructure necessary for interoperable information systems, but also for knowing how to fund data-sharing models. Guidance was also lacking on how to build shared understanding and trust among partners and stakeholders – crucial components of interoperability that encourages collaboration and the exchange of information.
- Guidance lacks specific “how to” information in key areas.
Gaps in detailed guidance were identified for the following components of interoperability: regulations and policy; partner, community, and stakeholder engagement; and privacy and security. While guidance documents strongly emphasized the need for a governance structure across the board, fewer suggested approaches for fostering agreement around organizational policies related to security, data use, technical standards, and privacy.
- Lack of consensus on data structure and data exchange standards.
In addition to assessing documents, we also interviewed five interoperability experts. Four of them raised the importance of standards, citing the need to ensure that systems are able to enter, send, and receive data in an understandable and actionable format. The fifth interviewee emphasized the need for consensual standards in particular; (s)he noted there is no need for new software and data standards, but there is a need for a shared understanding and consensus on which existing standards to use in contracts, regulations, and reporting requirements.
What It All Means
From a technological standpoint, interoperability is becoming more achievable due to advancements and investments in computer science and training. That said, the feasibility and reality of establishing truly interoperable systems will ultimately depend on leadership, organizational commitments to shared goals, and allocation of adequate resources. Ignoring human-controlled components will make it much harder to implement the necessary infrastructure to enable interoperability.
Based on what we have learned, we recommend these steps for the health and human services sectors:
- Make neutral forums and platforms more available to share knowledge, strategies, and toolkits.
- Provide more guidance and training on confidentiality, privacy, and security in plain language.
- Convene groups that can have an “honest and informed conversation about standards.”
- Develop guidance on how to shift the current culture – which has an organization-specific focus on data ownership – to one that promotes information-sharing and interoperability.
We look forward to continuing to learn from and support those who have already started to collaborate and share across sectors. To ask questions, learn more and get involved, please write to nic@stewardsofchange.org or visit www.nic-us.org.