Best Practices for Building an Integrated National Health Information System: Rwanda.

Author(s) Caricia Catalani1, Angela Hoth2, Dawn Seymour3, Tyler Nelson 4, Felix Kayigamba 5, Richard Gakuba6
Affiliation(s) 1Innovative Support to Emergency, Disease, & Disaster (InSTEDD) & University of California, Berkeley, School of Public Health, San Francisco, United States, 2Innovative Support to Emergency, Disease, & Disaster (InSTEDD), Berkeley, United States, 3Rwanda Health Information Exchange, Regenstrief Institute, Kigali, Rwanda, 4Maternal Health & RapidSMS, The Access Project, Kigali, Rwanda, 5The Access Project, Kigali, Rwanda, 6 Rwanda Health Information Exchange , Kigali, Rwanda
Country - ies of focus Rwanda
Relevant to the conference tracks Innovation and Technologies
Summary The Rwanda Health Information Exchange (RHIE) is among the world’s first efforts to establish an integrated national health information system in a low-resource setting. Global decision-makers and implementers can benefit from both RHIE's open source tools and knowledge of leading and managing innovation for integration. This study assesses best practices in the design, development, and deployment of RHIE from the perspective of key stakeholders. Themes from the analysis of semi-structured interviews with funders, leaders, and implementers include recommendations on governance of country-owned initiatives, technological design and development, and deployment in a low-resource setting.
Background RHIE is a cloud-based system that supports quality of care and continuity of care over time, across geographies, and across different care delivery sites. RHIE’s vision is to improve health and wellbeing by ensuring that critical information follows patients when and where they need it, despite the dozens of different information systems used nationwide. In 2010, RHIE was designed and developed under the leadership of Rwanda’s Ministry of Health by the Open Health Information Exchange (OpenHIE), a global open-source technology community including partners at PEPFAR, Canadian International Research Development Center, Rockefeller Foundation, Regenstrief Institute, InSTEDD, Jembi Health Systems, IntraHealth, and others. RHIE’s national rollout began in 2012 and entailed working across sites with minimal infrastructure and among providers with little computer experience to configure hardware, install software, build local capacity, and manage technical support . Today, and as scale-up continues, RHIE facilitates the movement of health information across Rwanda with the primary aim of improving maternal and child health and the treatment and prevention of HIV/AIDS.
Objectives The Open Health Information Exchange builds free and open-source tools to enable other national leaders, policymakers, and implementers to improve the integration of health data and systems through the establishment of health information exchanges. Today, the partnership is collaborating with national leaders from six countries, providing technical support required to spearhead this effort. However, more than just tools and technical support, decision-makers need practical insights into the process of leading and managing innovation of this kind. As such, this study aims to describe the best practices in design, development, and deployment of a health information exchange, based on the RHIE experience. Researchers conducted key stakeholder interviews among RHIE funders, leaders, and implementers with a range of expertise from computer engineering to health systems management to clinical care. From their critical reflections of the RHIE initiative, its three years of history, and its pathways forward, stakeholders provide recommendations on approaches to governance of country-owned initiatives, strategies for technological design and development, and tactics for managing deployment of technological innovation in low-resource settings.
Methodology Qualitative semi-structured interviews were conducted with RHIE key stakeholders. Stakeholders included Ministry of Health leaders & implementers, project managers & strategists, technology architecture designers & developers, and funders & other institutional partners. Semi-structured interviews guided a conversational interview, providing the interviewers with key points of discussion without requiring strict adherence to a set order of questioning or phrasing of the questions. As such, interviewees provide descriptions of their experiences, ideas, and critiques in an open and guided discussion. Interview were conducted by two trained interviewers via phone, audio-recorded, and documented through detailed notes. Interview duration ranged from 45-75 minutes. Analysis was conducted using Dedoose Mixed Methods Analysis Software, a cloud-based research and analysis application. A modified grounded theory approach was used in the analysis of qualitative data. This approach facilitated the detailed and systematic examination of data regularities in the relationships between and within codes, and for variations and contrasts within codes. Major themes emerged from the codes and a descriptive framework formed.
Results Key stakeholder interviews included 14 participants from 7 organizations and 4 countries. Several key themes emerged across the major phases, spanning partnership building, design, development, deployment, and evaluation. First, eHealth is a new field without established guidelines for management and leadership and, as such, most found it challenging to partner without clearly articulated governance rules. Terms of governance, they argued, provide guidance for decision-making, roles and responsibilities, accountability, and transparency. The RHIE experience confirmed for most that country-ownership of the initiative should be established early and embedded into the partnership’s governance structures.Second, most partners commented on the difficulty of collaboration when key contributors were spread across several countries and time-zones. They explained that in a low-resource setting, it is often necessary to look for eHealth integration expertise and capacity from people based in other countries. Cross-cultural, cross-national, and cross-disciplinary communication was immensely difficult, although building an integrated system required a well-integrated team. Stakeholders found that it was critical to have a shared commitment to regular communication and ample budget for in-person meetings.Third, experts were adamant that an eHealth integration initiative should start by looking at existing, tested, and ideally open-source tools that might serve as customizable building blocks for their own solution. While identifying these tools, most argued that the team must create a shared standard of assessment so that they can transparently evaluate tools in a world where business interests may sway these decisions. Many stakeholders shared the opinion that eHealth solutions must be simple, tested, and even boring, although “the siren song is to do something new, bold, and innovative.”Finally, most partners found that the health and human development objectives of the project were obfuscated by the technological objectives of the project. RHIE contributors spent the vast majority of their efforts on designing and developing the technology, often without a shared vision of how the system would ultimately impact health services, morbidity, and mortality. One expert argued that it should have been the opposite and that “in a sociotechnical system, the technical should be 10% and the rest of the money and time should be spent focusing on implementing.”
Conclusion The health systems integration experts involved in RHIE shared a common sense of the challenges and opportunities inherent in partnering, designing, developing, and deploying a health information exchange. Several best practices emerge from these findings: establish rules of governance to guide the partnership; plan for regular and in-person communications to facilitate collaboration among diverse contributors; build on existing, tested, and open-source technologies before considering anything new; and, create a shared strategic and practical vision for how a new eHealth tool will impact health. As the OpenHIE expands beyond Rwanda and into new country implementations, these findings can be used to guide policy-makers, implementers, and other experts. Worldwide, country leaders are struggling to take advantage of the digitization of health information while managing innovation within health centers and protecting patient privacy. In an era of big data, health information exchange is one way to integrate and manage health information across disparate systems. Health information exchange tools and best practices may improve health and wellbeing by ensuring that critical information follows patients when and where they need it, despite the dozens of different health information devices, tools, and systems emerging worldwide.

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