OpenHIE Values and Digital Principles
Back in March 2016, the OpenHIE community of practice officially endorsed The Principles for Digital Development, an initiative to take lessons learned in the use of information and communication technologies (ICTs) in development projects and put them into practice. As a values-driven community, it was natural to align with this initiative, given how closely our community aligned with the concepts inherent in the Digital Principles.
As we reflect on our community’s activities for 2016, we are pleased to have many examples of how we advocate and encourage this values-based model, working with countries as they plan, and begin to implement large scale health data sharing architectures.
Design with the User: Many countries are currently in the process, or have completed the publication of a national architecture for health data sharing. We are proud that many of these countries ministries, such as Kenya, Nigeria, Ethiopia, Tanzania, and the Philippines are being supported by members of our community. In each case, these architectures are being conceptualized against real world health issues, and the priorities of health leadership. For example, in Nigeria’s recent National Health ICT Strategic Framework, the architecture has been conceptualized against the country’s vision of universal health coverage, and the early operational activities have been prioritized against a collection of real world health data sharing challenges. In Tanzania, members of our community participated in a Gates-funded activity called the Better Immunization Data Initiative. This early work around encouraging better immunization compliance through technology and data sharing was an important precursor that supported their national eHealth architecture plan. In all of these circumstances, countries are designing architectures against real, not perceived needs.
Use Open Standards, Open Data, Open Source, and Open Innovation: Throughout the OpenHIE community, we strive to be a potent example of the power of open standards and open content. We are strong ambassadors of open standards, through our partnership with Integrating the Healthcare Enterprise (IHE), a standards-specification organization which helps to operationalize the use of base syntactic and semantic standards such as HL7, FHIR, ICD, and SNOMED. Many of the country experiences within our community have both validated these standards as viable within resource-constrained environments and encouraged fundamental revisions to them. In some cases, we have even been lead developers of new standards; our work on ADX, and CSD are two prominent examples. We also spend significant energy in developing reference technologies to demonstrate the viability of these standards, and in most cases, these demonstration technologies are made available via liberal open source licenses. But in the spirit of true openness, we also encourage the participation of commercial or proprietary equivalents for these technologies within our larger ecosystem to maximize the potential choices for consumers. Most importantly, we go out of our way to do all of the work of our community out in the open. That has become an obsession for us! New members of our community can learn about most of the previous conversations by reviewing our wiki, our mailing lists (which are archived and available to the public), and through recordings and collaboratively developed minutes to our meetings.
Address Privacy & Security: One of the more challenging aspects of working with countries on data sharing strategies is the need for a highly tailored set of policies and procedures for how to ensure the privacy and security of health data. Each country has unique socio-political dynamics that obligate a deliberate discernment of details around topics such as data ownership, stakeholders, and individual rights. In other words, there is no common boilerplate or approach to addressing privacy and security around health data sharing. This has been a fundamental challenge that has hindered our ability to adequately support countries. In response to this, in 2016, we worked with domain experts within the US and around the world to develop a framework for starting a dialogue with countries, and discerning the aspects of privacy and security that are priority areas of emphasis. “A Global Framework for Health Information Exchange” is a report laying out the framing questions and the concepts which will assist decision-makers in documenting the relevant policies that ensure adequate safeguards for privacy and security. That being said, we are very interested in learning how others have broached these kinds of issues and would benefit greatly from the involvement of others as we work through this challenging topic.
We are proud to be an endorsing organization of the Digital Principles, and look forward to the peer learning opportunities that will come with further active engagement with this initiative in 2017.