RESUMEN
BACKGROUND: Zindagi Mehfooz (Safe Life) Electronic Immunization Registry (ZM-EIR) is a comprehensive suite of digital health interventions that aims to improve equitable access, timeliness, and coverage of child immunizations through a smartphone-based application (app) for vaccinators, web-based dashboards for supervisors and managers, text message alerts and reminders for caregivers, and a call center. It has been implemented at scale in Sindh Province in Pakistan. OBJECTIVE: This paper presents findings from an evaluation of Zindagi Mehfooz, electronic immunization registry (ZM-EIR) and suite of digital health interventions, aimed at improving data availability and use as a contribution among other immunization program interventions to improved immunization outcomes for children 12-23 months in Sindh Province, Pakistan. METHODS: The mixed-methods study included a) Analysis of ZM-EIR system data to identify high- moderate- and low- adoption and compliance sites, b) In-depth interviews with caregivers, vaccinators, supervisors, and managers; and c) Pre-post outcome evaluation using vaccine coverage from the Multiple Indicator Cluster Surveys (MICS) 2014 and 2018-2019. Key outcomes of interest were improved data availability and use and contributions to immunization outcomes, including receipt of individual antigens (BCG, Penta I-III, Measles), full immunization (all antigens), and zero dose children defined as children aged 6 to 23 months that have not received the first dosage of DPT1/Penta. RESULTS: By registering newborns, providing alerts and reminders, and tracking their immunization completion, ZM-EIR improved data availability and use within the Essential Program for Immunization (EPI) in Sindh, Province. ZM-EIR was well received by EPI administrators, supervisors, vaccinators, and caregivers. The key benefit highlighted by ZM-EIR users is a list of children who missed scheduled vaccines (defaulters). Through greater availability and use of data, the ZM-EIR implementation as part of a broader package of immunization program strengthening activities in Sindh Province may have contributed to an increase in immunization coverage and timeliness for BCG and decrease in zero-dose children in 2018-2019 from 2014. Additional findings from the study included the dual burden of reporting on paper and gender-related considerations of female caregivers not wanting to give their phone numbers to male vaccinators, creating barriers to greater uptake of ZM-EIR. CONCLUSIONS: ZM-EIR is a promising technology platform that has increased the availability and use of immunization data that may have contributed along with other intensive immunization program investments to improvements in immunization outcomes through systematic registration of children, alerts and reminders, and increased use of data for planning and monitoring by the EPI Program.
RESUMEN
The increasing digitisation of personal health data has led to an increase in the demand for onward health data. This study sought to develop local language scripts for use in public sector maternity clinics to capture informed consent for onward health data use. The script considered five possible health data uses: 1. Sending of general health information content via mobile phones; 2. Delivery of personalised health information via mobile phones; 3. Use of women's anonymised health data; 4. Use of child's anonymised health data; and 5. Use of data for recontact. Qualitative interviews (n = 54) were conducted among women attending maternity services in three public health facilities in Gauteng and Western Cape, South Africa. Using cognitive interviewing techniques, interviews sought to:(1) explore understanding of the consent script in five South African languages, (2) assess women's understanding of what they were consenting to, and (3) improve the consent script. Multiple rounds of interviews were conducted, each followed by revisions to the consent script, until saturation was reached, and no additional cognitive failures identified. Cognitive failures were a result of: (1) words and phrases that did not translate easily in some languages, (2) cognitive mismatches that arose as a result of different world views and contexts, (3) linguistic gaps, and (4) asymmetrical power relations that influence how consent is understood and interpreted. Study activities resulted in the development of an informed consent script for onward health data use in five South African languages for use in maternity clinics.
In the wake of growing digitisation of personal health data, greater scrutiny is needed on the language of informed consent and the processes for soliciting consent in health care facilities. Qualitative interviews using cognitive interviewing techniques were used to develop and refine consent language in English, Sesotho, isiXhosa, isiZulu and Setswana for the onward use of health data among maternity clients in public sector primary health clinics in the Western Cape and Gauteng provinces of South Africa. We found that translation in local languages and addressing individual words and phrases was only one barrier to requesting informed consent. Other barriers were cognitive mismatches between the question intent and how women understood the question, linguistic gaps that were linked to language and identity, and power dynamics that affected how women understood the consent script. Emerging language scripts used "/" to present words in multiple languages; a reflection of the multi-linguistic nature of communities in this context.