eRegistries: digital health interventions to empower health workers, pregnant women, and families

Abstract

To improve health, it is important that everyone, including women and children, has access to high-quality healthcare. One way to achieve this is with digital health interventions but comes with implementation challenges. The Global Digital Health team at the Norwegian Institute of Public Health works on implementing and researching digital registries for maternal-child health (eRegistries) in low- and middle-income countries (LMICs), including Palestine, Bangladesh, Uganda, and Rwanda. LMIC health workers collect lots of data, but it's often just written down on paper and goes unused. The team supports health workers transition from paper to digital data entry and gives them tools to support their work, like clinical decision support. We work with pregnant women and families to improve their care seeking and have developed SMS messages with health advice and appointment reminders. We collaborate with health system officers who are experts in navigating their complex healthcare systems to implement sustainable solutions.

Introduction

The eRegistries approach involves designing digital data entry tools for health workers to support clinic work and routine documentation, while also ensuring that collected data are used to support decision-making. In a health system with an eRegistry, adoption of digital tools are exercises in behavior change and not ‘just’ IT projects, which is our guiding principle. Our implementation-research initiatives in Palestine, Bangladesh, Rwanda, and Uganda start with gaining a thorough contextual understanding of health of pregnant women and children, and of health information systems, followed by a mapping of stakeholder needs. Based on this, we design implementations and effectiveness studies of evidence-based health interventions. We assess quality of care and health, and measure outcomes chosen by country stakeholders based on their priority. Each step of the implementation is guided by co-design principles and implementation science, and the research by relevant frameworks for qualitative or quantitative methods, as appropriate.

Who should benefit?

Globally, thousands of women die due to pregnancy related complications. More than 80% of these deaths happen in south Asia and Sub-Saharan Africa. Antenatal care (ANC) is a proven and effective intervention that provides an opportunity for identifying complications in pregnancy, and appropriate referral and treatment. Good quality ANC can reduce maternal and neonatal mortality and morbidity; mortality reductions are one of the Sustainable Development Goals. ANC is also the first, and in many instances, the only time women encounter the health system. For this reason, screening for other conditions such as HIV and malaria and health education campaigns for other illnesses are delivered within the ANC program. LMIC health systems face dual problems of poor quality and sub-optimal coverage of health services, particularly for vulnerable groups like women and children. And these, together with the health workers, are our main beneficiaries. Data are either unavailable or of poor quality in many LMIC health systems. Counterintuitively, according to a report, health workers in LMICs spend about 1/3 of their time doing reporting and documentations. Much of the documentation efforts appear to be wasted, as these data are not fully used. Digital health Interventions (DHIs) have huge potential to improve health and care services but are frequently implemented in a top-down manner without considerations to health worker workloads and needs, and client preferences and barriers. Our implementations involve governmental primary healthcare clinics, accessed by the most vulnerable for ANC and delivery services. We have worked in a variety of settings, semi-urban in Palestine, rural in Bangladesh and Uganda, and a mix in Rwanda. We cover entire districts and catchment areas, and thereby large parts of the population in need. In 2016, the WHO released a revised set of ANC guidelines, increasing the number of ANC contacts from 4 to 8. WHO has also issued Guidelines on Digital Health Interventions (DHIs), highlighting a set of digital tools for health workers and clients. To facilitate guideline implementation using DHIs, the WHO has also released Digital Adaptation Kits for ANC. Our work involves the implementation of new health guidelines via digital health interventions. In doing that we support the work of DHIS2, who is a global implementation actor for health information systems. Thus, through our work we deliver global health goods to international actors, who we also consider as our beneficiaries.

Engagement

In the four countries we have engaged with, the overall objective is to implement a digital registry for maternal and child health with DHIs for health workers and supervisors, and clients. Two aspects are common to our projects. Namely, we work with 1) the Ministry of Health to ensure a more integrated and sustainable path right from the start; and 2) stakeholder groups and users of the relevant health services and derived data, namely, doctors, nurses and health assistants, pregnant women, families and caregivers of children, supervisors and data managers, and policymakers. We work hard to ensure stakeholder engagement from project start that continues throughout, as to deliver sustainable health system solutions. The scope of implementation, however, varies from country to country, and is defined based on findings from stakeholder engagement. In Palestine, an eRegistry was implemented at scale for ANC, postpartum and newborn care in over 300 public primary healthcare clinics. Health workers enter data in client health records and have transitioned from paper. In Bangladesh, an eRegistry was implemented in one district of 72 health facilities. Community health workers and facility-based health workers have eRegistry access, such that, for the first time, longitudinal patient records are generated in a health information system otherwise operating in strict silos. Health workers in Palestine and Bangladesh were deeply engaged in designing clinical decision support, and feedback dashboards. Tailored-made SMS messages were conceptualized and designed based on inputs from clients and families. In Rwanda, our efforts focus on two programs – childhood immunization and childhood growth and nutrition monitoring. The country team engages routinely with health workers, mapping their work needs and perceptions of digital tools and seeking solutions together with them, and has had extensive dialogue with caregivers of children. The scope is relatively small, including a few clinics in 5 districts, with expectations to scale should there be an opportunity. In Uganda, we are starting an implementation-research project of the WHO’s digital adaptation kit (DAK) for ANC in one district of 40 clinics. We have already established engagement with health system officers and are moving towards co-design with users and implementation.

The Research

In all our projects, we work closely with in-country academic teams consisting of implementation experts and researchers, including PhD and Master students. We conduct research on design of digital health interventions (DHIs), and effectiveness trials and impact evaluations, as well as implementation research, recently. Our implementation research and intervention trials are conducted in real-world settings, and in tandem with implementation. Here we briefly describe our activities by country: Palestine: We conducted quantitative evaluations of changes in values of health system indicators when there are transitions from aggregate, paper-based data, to individual-level clinical data. Results were shared with stakeholders to prepare them. We used qualitative methods to understand client perceptions towards ANC, and based on the findings, defined the SMS package. We completed two effectiveness trials to assess the impact of an eRegistry on quality of care, patient outcomes, and satisfaction. In trial 1, we compared an eRegistry with clinical decision support against paper-based systems. In trial 2, we compared groups receiving quality improvement dashboards, SMS, or both against a group using an eRegistry with clinical decision support. Bangladesh: The project started with qualitative studies of clients’ and their family’s perceptions of the importance of ANC and SMS messages were designed based on the findings. After a phase of formative research with health workers in defining content of the eRegistry, we conducted an effectiveness trial of an eRegistry with 3 DHIs compared to an unshared digital client record on quality of care, health, and mortality. A sub-study has also been completed on early vs. late BCG vaccinations using the eRegistry infrastructure. Rwanda: In this implementation research project, we have mapped stakeholder needs and expectations of the immunization and nutrition e-Trackers. Based on the findings, the research team is conducting implementation of specific DHIs in a co-design process with stakeholders. Uganda: This project combines implementation science of 1) eRegistries and digital health interventions and 2) ANC 4 visits to ANC 8 contacts. An effectiveness trial will follow, where we will compare a group that receives ANC4 with another with ANC8 and assess the effect on maternal and newborn health.