Notice E1 Client Registries

Notice E for promoting investments in digital health global goods

Patient Registration and Identity Management Services for Health Information Exchanges

Two-sentence overview: 

IntraHealth’s new Open Client Registry (OpenCR) represents a foundational global good supporting identity management needs in low resource countries using leading technologies, including the powerful ElasticSearch engine and the reference standards-based HAPI FHIR server. Building on its successful real-world pilot, IntraHealth and partners Regenstrief Institute (an affiliate of Indiana University), Ona, and IntelliSOFT seek to expand OpenCR into a robust, high-value global good and field test it with select ministries of health through a consortium that includes unparalleled international design and deployment expertise in client registry and identity management as well as leadership within the OpenHIE architecture and client registry communities.

Executive summary: 

Accurate patient identification is an essential component of comprehensive digital health infrastructure and essential for ensuring safe patient care, retention of vulnerable populations, epidemic control, and support of population-level health. The use of unique identifiers and identity management is the basis of shared health records and together they enable better health outcomes and improve resource allocation, provide for more accurate monitoring and population health data, and support data for strategic decision making.

IntraHealth recently completed the development of an open source, standards-based prototypical client registry, OpenCR, which was built to safely and uniquely identify patients who have demographic information stored in multiple health information systems. Leveraging IntelliSOFT’s relationships with ministries of health (MOHs), Ona’s understanding of the evolving security landscape, and Regenstrief’s expertise developing client registries in high and low resource settings, the consortium proposes to rapidly expand the functionalities of OpenCR to meet the global community’s unmet need for a standards-based, advanced, yet accessible, open source client registry to support longitudinal management of patient data across the health sector.

The initial use case driving development for OpenCR was developed to match and link records together under a single unique ID. With funding from Digital Square, the consortium team plans to complete the expansion of the OpenCR prototype into a broadly applicable global good across a wide variety of low resource settings and use cases to enable countries to track patient records across health information systems.

As a cornerstone of interoperability, OpenCR will help realize the vision of electronic health records (EHR) and health information exchanges (HIEs) to support scalable, safe, and effective care especially in low resource settings.

Consortium Team: 

IntraHealth International will lead the overall solution development process with consortium partners Regenstrief Institute (an affiliate of Indiana University), Ona, and IntelliSOFT. 

IntraHealth is a global health NGO with a 40-year history in developing successful data tools and digital health applications for health workers and managers, including OpenCR, a prototypical open source, standards-based client registry. We develop solutions that are open source, data-driven, sustainable, and collaborative. As a pioneer in the field of health workforce informatics, we’re committed to using technology, information, and analytical approaches to support the people at the center of our health systems. IntraHealth’s experienced Digital Health team will lead rapid expansion of OpenCR to meet the community’s unmet need: Luke Duncan has over 20 years of experience in software development, including leading the development of multiple data interoperability standards and reference designs. Richard Stanley, PhD, has 24 years of experience in information and communications technology. Finally, Dana Acciavatti has 19 years of experience strengthening health systems, including leading project management for IntraHealth’s portfolio of digital health projects.

The Regenstrief Institute’s Center for Biomedical Informatics, including the Global Health Informatics program, has 40 years of experience in the design, deployment, implementation and utilization of health information technology, with particular strength in supporting the use of standard terminology and standardized metadata, patient record-keeping systems, and standards-based health information exchange (HIE). Regenstrief is the creator of OpenMRS, an open-source electronic medical record system, and leader of the global OpenHIE community, which includes coordinating the OpenHIE Implementers Network, leading the OpenHIE Architecture Community and Review Board, and leading the Client Registry subcommunity. Regenstrief will support Work Package One with high-level solution design, will bring forth feedback from the OpenHIE community, and will contribute to Work Package Four. Regenstrief and Indiana University’s key team members are Dr. Shaun Grannis (IU) and Jennifer Shivers (Regenstrief). Shaun Grannis, MD, MS, FAAFP, FACMI, FAMIA and an Indiana University faculty member, has contributed to ensuring patient identity in a wide range of settings, including overseeing the development of the architecture for Rwanda’s first HIE client registry Jennifer Shivers, MFA, is a health information technology integration and process design specialist within the Regenstrief Institute with over 25 years of experience.

Established in early 2014, Ona (which means “to see” in KiSwahili) is a design and engineering social enterprise with offices in Burlington, Vermont, and Nairobi, Kenya whose mission is to help ensure equitable access to services to those who need them most. Ona builds technology that affords new opportunities for governments, international organizations, development organizations, and related actors to be increasingly collaborative, data-driven, and accountable to the people they serve. Ona is the lead technology partner for the open-source global good OpenSRP, currently deployed in more than 12 countries globally. Ona will contribute to Work Package One and deliver Work Package Three. Contributions will be led by Peter Lubelle-Doughtie, MS (CTO), Jason Rogena (Site Reliability Engineering Lead), Samuel Githengi (Senior Engineer), Emmanuel Tarus (Senior Engineer), and Craig Appl, MPH (Health Technical Lead).

IntelliSOFT Consulting ltd. is a Kenyan-based company that has been implementing health information systems in East Africa since 2009. IntelliSOFT will use its national client registry and unique patient identifier experience in Tanzania and Kenya to undertake Work Package Two, leveraging its strong relationships with MOHs and their partners to ensure effective field testing of OpenCR. IntelliSOFT’s contributions will be led by Steven Wanyee, an accomplished digital health expert with more than 18 years of experience implementing digital health solutions across Africa with support from Peter Anampiu, Kenneth Ochieng, and Susan Gath. Peter Anampiu is an experienced business analyst with over 10 years of experience, including implementing enterprise-level systems. Kenneth Ochieng is a senior software developer with over 10 years of experience developing large scale digital health solutions. Susan Gath is a certified Project Management Professional with more than 5 years of experience managing large digital health projects in East and Southern Africa.

Geographic Reach: 

OpenCR has been deployed on servers at the Country Public Health Laboratory of Uganda.

WHO Classification: 
Shared Health Record and health information repositories
Application Status: 
Not Approved
Application Tags: 
interoperability
openhie
packaging and deployment
client registry
shared health record

Comments

Hello,
Since the Digital Square website says "Use comments to state your interest in joining a team", I now express my interest.

I have been familiar with the topic of client registries for several years now, and I have received many requests from various countries regarding the existence of "ready-made" beneficiary registries for health and social protection.

Additionally, I have been involved in other Open Source Client Registry projects for the health sector, which turned out to be challenging for large scale implementations. Sharing and learning from this experience might be useful for you.

Please see my profile on Linkedin and feel free to contact me for further collaborations
https://www.linkedin.com/in/michael-stahl-6b505446/

Hi Emily

Thanks for the cnocept note, a quick thought is around QA, could you touch on the QA aspects of the work that you are expecting to understake too as well as what level of auditing will be in the system, i.e. both message audit and system changes/use audit?

Hi Carl, thanks for the comment. Currently the system saves audit messages when resources are submitted with the matching details saved (and when matches are broken or unbroken). We plan to expand this to cover all of the UI functionality as well as track details on startup and shutdown when possible. Actions done outside the software will be beyond the scope of this project (like manually editing files) but we’ll be able to track the change during startup, just not who made the change. We’re also planning on making most of these options configurable with the software so those changes would be tracked.

Thanks, great concept note. Some thoughts: 

  • What are the proposed areas of work in relation to the OpenHIE CR specifications?
  • What are the current matching algorithms/features that exist and what need to be developed? 
  • What are some of the risks?

Hi Vikas, thank you for your comments! Here is some additional information:

  • Areas of work in relation to the OpenHIE CR specifications: Work Package One is designed to meet the remaining requirements in the OpenHIE architecture for client registries not already implemented in OpenCR (CRWF-4, CRF1e, CRF1g, CRF2c, CRF5, CRF9)
  • Matching algorithms/features: Current features include 45 algorithm variations using the popular ElasticSearch engine and plugins. This includes support for deterministic or probabilistic matching. More details can be found here: https://intrahealth.github.io/client-registry/supported/. The implemented algorithms represent those in the literature and in the requirements defined by CDC stakeholders. We can include more information on additional matching and algorithms in the full proposal. 
  • Risks: As noted in the concept note, there are often many stakeholders with diverse requirements, so there will be a transparent development process that includes a range of voices in our requirements definition, roadmap design, software development, and testing processes.