An assessment of routine primary care health information system data quality in Sofala Province, Mozambique

<p>Abstract</p> <p>Background</p> <p>Primary health care is recognized as a main driver of equitable health service delivery. For it to function optimally, routine health information systems (HIS) are necessary to ensure adequate provision of health care and the development of appropriate health policies. Concerns about the quality of routine administrative data have undermined their use in resource-limited settings. This evaluation was designed to describe the availability, reliability, and validity of a sample of primary health care HIS data from nine health facilities across three districts in Sofala Province, Mozambique. HIS data were also compared with results from large community-based surveys.</p> <p>Methodology</p> <p>We used a methodology similar to the Global Fund to Fight AIDS, Tuberculosis and Malaria data verification bottom-up audit to assess primary health care HIS data availability and reliability. The quality of HIS data was validated by comparing three key indicators (antenatal care, institutional birth, and third diptheria, pertussis, and tetanus [DPT] immunization) with population-level surveys over time.</p> <p>Results and discussion</p> <p>The data concordance from facility clinical registries to monthly facility reports on five key indicators--the number of first antenatal care visits, institutional births, third DPT immunization, HIV testing, and outpatient consults--was good (80%). When two sites were excluded from the analysis, the concordance was markedly better (92%). Of monthly facility reports for immunization and maternity services, 98% were available in paper form at district health departments and 98% of immunization and maternity services monthly facility reports matched the Ministry of Health electronic database. Population-level health survey and HIS data were strongly correlated (R = 0.73), for institutional birth, first antenatal care visit, and third DPT immunization.</p> <p>Conclusions</p> <p>Our results suggest that in this setting, HIS data are both reliable and consistent, supporting their use in primary health care program monitoring and evaluation. Simple, rapid tools can be used to evaluate routine data and facilitate the rapid identification of problem areas.</p

Web-based return of BRCA2 research results:one-year genetic counselling experience in Iceland

There is an increased pressure to return results from research studies. In Iceland, deCODE Genetics has emphasised the importance of returning results to research participants, particularly the founder pathogenic BRCA2 variant; NM_000059.3:c.771_775del. To do so, they opened the website www.arfgerd.is. Individuals who received positive results via the website were offered genetic counselling (GC) at Landspitali in Reykjavik. At the end of May 2019, over 46.000 (19% of adults of Icelandic origin) had registered at the website and 352 (0.77%) received text message informing them about their positive results. Of those, 195 (55%) contacted the GC unit. Additionally, 129 relatives asked for GC and confirmatory testing, a total of 324 individuals. Various information such as gender and age, prior knowledge of the variant and perceived emotional impact, was collected. Of the BRCA2 positive individuals from the website, 74 (38%) had prior knowledge of the pathogenic variant (PV) in the family. The majority initially stated worries, anxiety or other negative emotion but later in the process many communicated gratitude for the knowledge gained. Males represented 41% of counsellees as opposed to less than 30% in the regular hereditary breast and ovarian (HBOC) clinic. It appears that counselling in clinical settings was more reassuring for worried counsellees. In this article, we describe one-year experience of the GC service to those who received positive results via the website. This experience offers a unique opportunity to study the public response of a successful method of the return of genetic results from research