Introducing medical genetics services in Ethiopia using the MiGene Family History App

Quinonez, Shane C.; Yeshidinber, Abate; Lourie, Michael A.; Bekele, Delayehu; Mekonnen, Yemisrach; Nigatu, Balkachew; Metaferia, Gesit; Jebessa, Solomie

doi:10.1038/s41436-018-0069-6

Cited by 12 publications

(23 citation statements)

References 32 publications

(39 reference statements)

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“…One DHT study reported on genomics data. 89 A psychiatric genomics consortium has made an exchange of data between research groups for genome-wide association studies on neurogenetics of schizophrenia, with tens of thousands of patients and controls included. The consortium developed and used the MiGene Family History App (MFHA) to assist clinicians with the collection and analysis of patient genetic data over six months and assessed its feasibility through a survey of 47 clinicians ( Table 5 ).…”

Section: Digital Health Technologiesmentioning

confidence: 99%

The potential of digital health technologies in African context, Ethiopia

Manyazewal

Woldeamanuel

Blumberg

et al. 2021

Preprint

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The World Health Organization (WHO) recently put forth a Global Strategy on Digital Health 2020 - 2025 with several countries having already achieved key milestones. We aimed to understand whether and how digital health technologies (DHTs) are absorbed in Africa, tracking Ethiopia as a key node. We conducted a systematic review, searching PubMed-MEDLINE, ScienceDirect, African Journals Online, ClinicalTrials.gov, and the WHO International Clinical Trials Registry Platform databases from inception to 02 February 2021 for studies of any design that investigated the potential of DHTs in clinical or public health practices in Ethiopia. This review was designed to inform our ongoing DHT-enabled randomized controlled trial (RCT) (ClinicalTrials.gov ID: NCT04216420). We found 23,897 potentially-relevant citations, among which 47 studies met the inclusion criteria, comprising a total of 594,999 patients, healthy individuals, and healthcare professionals. The studies involved seven DHTs: mHealth (25 studies, 573,623 participants); electronic health records (13 studies, 4,534 participants); telemedicine (3 studies, 445 participants); cloud-based application (2 studies, 2,382 participants); genomics data (1 study, 47 participants); information communication technology (2 studies, 551 participants), and artificial intelligence (1 study, 13,417 participants). The studies targeted six health conditions: maternal and child health (15), infectious diseases (11), non-communicable diseases (3), dermatitis (1), surgery (3), and general health conditions (14). The outcomes of interest were feasibility, usability, willingness or readiness, effectiveness, quality improvement, and knowledge or attitude towards DHTs. Four studies involved RCTs. The analysis showed that although DHTs are a relatively recent phenomenon in Ethiopia, their potential harnessing clinical and public health practices are highly visible. Their adoption and implementation in full capacity requires more training, access to better devices such as smartphones, and infrastructure. DHTs hold much promise tackling major clinical and public health backlogs and strengthening the healthcare ecosystem in Africa. More RCTs are needed on emerging DHTs including artificial intelligence, big data, cloud, genomics data, cybersecurity, telemedicine, and wearable devices to provide robust evidence of their potential use in such settings and to materialize the WHO's Global Digital Health Strategy. Keywords: Digital Health, mHealth, Electronic medical records, Telemedicine, eHealth, Information communication technology, Africa, Ethiopia.

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Section: Digital Health Technologiesmentioning

confidence: 99%

The potential of digital health technologies in African context, Ethiopia

Manyazewal

Woldeamanuel

Blumberg

et al. 2021

Preprint

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“…Currently there are no established medical genetics services with no in-country clinical geneticists or genetic counselors. Previous work though has shown Ethiopian patients are interested in diagnostic and preventative prenatal services with healthcare providers expressing a need for further training in medical genetics and genetic counseling [16,17]. Limited clinical genetic testing consisting of multiplex ligation probe amplification is available through a private lab in Ethiopia since 2014 with plans for platform expansion in the future to include next-generation sequencing.…”

Section: Introductionmentioning

confidence: 99%

The introduction of genetic counseling in Ethiopia: Results of a training workshop and lessons learned

et al. 2021

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Background Over the past two decades non-communicable diseases (NCDs) have steadily increased as a cause of worldwide disability and mortality with a concomitant decrease in disease burden from communicable, maternal, neonatal and nutritional conditions. Congenital anomalies, the most common NCD affecting children, have recently become the fifth leading cause of under-five mortality worldwide, ahead of other conditions such as malaria, neonatal sepsis and malnutrition. Genetic counseling has been shown to be an effective method to decrease the impact of congenital anomalies and genetic conditions but is absent in almost all sub-Saharan Africa countries. To address this need for counseling services we designed and implemented the first broad-based genetic counseling curriculum in Ethiopia, launching it at St. Paul’s Millennium Medical College (SPHMMC) in Addis Ababa, Ethiopia. Methods The curriculum, created by Michigan Medicine and SPHMMC specialists, consisted of medical knowledge and genetic counseling content and was delivered to two cohorts of nurses. Curriculum evaluation consisted of satisfaction surveys and pre- and post-assessments covering medical knowledge and genetic counseling content. Following Cohort 1 training, the curriculum was modified to increase the medical knowledge material and decrease Western genetic counseling principles material. Results Both cohorts reported high levels of satisfaction but felt the workshop was too short. No significant improvements in assessment scores were seen for Cohort 1 in terms of total scores and medical knowledge and genetic counseling-specific questions. Following curriculum modification, improvements were seen in Cohort 2 with an increase in total assessment scores from 63% to 73% (p = 0.043), with medical knowledge-specific questions increasing from 57% to 79% (p = 0.01) with no significant change in genetic counseling-specific scores. Multiple logistic, financial, cultural and systems-specific barriers were identified with recommendations for their consideration presented. Conclusion Genetics medical knowledge of Ethiopian nurses increased significantly following curriculum delivery though difficulty was encountered with Western genetic counseling material.

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“…While the capacity to diagnose congenital anomalies and genetic disease increases at SPHMMC and throughout Ethiopia, only a minority of physicians feel their medical genetics knowledge is sufficient for their practice and the majority are interested in additional genetics education (Quinonez et al., 2019). Prior work at SPHMMC found that 64% of providers reported being asked about congenital disorders/genetic disease multiple times per month, while only 8% stated they were never asked about this by patients/families (Quinonez et al., 2019). While future training of healthcare providers in genetic counseling is planned, Ethiopian patients have no experience with genetic counseling and their attitudes toward genetic counseling warrant consideration prior to training initiation.…”

Section: Introductionmentioning

confidence: 99%

Knowledge and attitudes about genetic counseling in patients at a major hospital in Addis Ababa, Ethiopia

Jacobs

O’Connor

Weldetsadik

et al. 2020

Journal of Genetic Counseling

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Previous work at St. Paul's Hospital Millennium Medical College (SPHMMC) in Addis Ababa, Ethiopia, demonstrated a need for genetic counseling (GC) services, with 4% of pediatric, neonatal intensive care, and prenatal patients identified as having indications for genetic evaluation (Quinonez et al, 2019). The aim of this study was to investigate SPHMMC patients' familiarity with, knowledge of, and attitudes toward GC services. Surveys were adapted from previous work in North America populations (Riesgraf et al, 2015 and Gemmell et al, 2017) and administered to 102 patients, and results were compared to North American populations using Student's t test. 30% of respondents reported at least some familiarity with GC, primarily via the media or healthcare providers. Patients had generally positive attitudes toward GC, reporting they would trust information provided by a genetic counselor and that GC is in line with their values. Knowledge of GC showed similar trends overall when compared to results from North American populations. Our work indicates limited exposure to GC in this population, but generally positive feelings toward GC. Patients' attitudes toward GC were comparable to rural North American populations surveyed using the same tool on most items; however, cultural differences including views on abortions and directiveness of healthcare providers could account for discrepancies and are important considerations when implementing genetic services globally.

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Introducing medical genetics services in Ethiopia using the MiGene Family History App

Abstract: Medical genetics services are needed in Ethiopia. As other countries increase their genetics capacity, the MFHA can provide fundamental genetics services and collect necessary epidemiologic data.

Cited by 12 publications

References 32 publications

The potential of digital health technologies in African context, Ethiopia

The potential of digital health technologies in African context, Ethiopia

The introduction of genetic counseling in Ethiopia: Results of a training workshop and lessons learned

Knowledge and attitudes about genetic counseling in patients at a major hospital in Addis Ababa, Ethiopia

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