Health
Genetics & Genomics Research Dissemination; Makerere Bioethicists Emphasize the Importance of Community Engagement
By Joseph Odoi
As Genetics research continues growing in Uganda, Bioethicists from Makerere University College of Health Sciences have stressed the importance of community engagement, genetic counselling and Public sensitization when conducting Genetics research in Uganda.
These recommendations were made at a research dissemination workshop held on the 8th December 2022 at Makerere University College of Health Sciences.
While presenting findings of the ELSI-UG project titled “Ethical and social issues in informed consentprocesses in African genomic research”, the Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki from College of Health Sciences, Makerere University in a special way welcomed participants to the dissemination. He noted that involving communities in genetics and genomics research is very important when it comes to enhancing the understanding of genetics and genomic information by the general public.
‘’There has been an exponential increase in genetics and genomic research in the last two decades.
However, this field of research is complex and is poorly understood by various research stakeholders. One way of enhancing understanding of genetics and genomic information by the general public is through community engagement. It is therefore crucial that communities are meaningfully involved in research processes right from conception. Community engagement provides a two-way communication channel through which researchers gain better understanding of community priorities, preferences, traditions, practices, and cultural sensitivities.’’ explained Prof. Mwaka.
He equally highlighted the need for translation of scientific language into local languages, genetic counsellors and consent in Genetics research adding that community engagement is crucial in building equitable research collaborations and trust between researchers and research communities.
Genetic and Genomics
According to National Institute of General Medical Sciences, Genetics is the scientific study of genes and how certain qualities, conditions or traits are passed from parents to their off springs. Genomics on the other hand involves using information about genes to: identify genetic disorders including future diseases so that doctors tailor treatment for individuals.
In same spirit, Dr. Moses Ochan, the Vice Chairperson of the Makerere University Research and Ethics Committee stressed the importance of sensitization of communities and researchers before any study is undertaken. According to him, sensitization enables communities understand the advantages and disadvantages of participating in a study thus making informed decisions.
In this United States National Institutes of Health funded study that sought to explore the knowledge,perceptions and experiences of stakeholders; researchers, bioethicists, REC members, research participants and caregivers/guardians on the informed consent process, and the ethical, legal and social implication of genomic research, 243 protocols were analyzed involving both local and international researchers
Findings
Return of individual genetic results to research participants
- Of 122 parents/caregivers of adolescents in the study, 77.1 % expressed the desire to receive all results of their children’s genetic/genomic results.
- 71.3 % of parents/caregivers agreed that children should be able to take part in research testing for genetic conditions that begin during childhood, even if there is no treatment that can alter the course of the condition
- 85.3 % of parents/ caregivers expressed the desire to know genetic research results about children to see if they are more likely to get a disease in the future.
- 71.3 % of parents/ caregivers agreed that Children should be able to take part in research testing for genetic conditions for which there is a treatment that begins during childhood that can alter the course of the condition
- 62.3 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that start in adulthood and have no treatment that can alter the course
- 89.4 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that will arise in their adult years, only if there is treatment or prevention that should begin in childhood
On the most important issues parents should consider in deciding whether or not to get genetic research results, 81.2% cited distress knowing that there are potential problems for other family members. Additionally, 45.0 % of parents and caregivers noted that receiving their child’s genetic results might worry their family; and 27.8% worried about stigma and discrimination
To address this, 69.2 % of parents and care givers said genetic counselling should be offered prior to a sample being taken to do genetic research
On perceptions on returning individual results of genomic research, parents and caregivers indicated that It is the researchers’ moral obligation to return clinically significant results; as such, genetic results should be communicated to them by the study doctor. Most parents preferred being informed first before involving the children; and some mothers expressed the desire to exclude the child’s father from these discussions until they (mothers) have understood the implications of the results in question.
On the role of children in making decision makings on whether to regarding return of genetic results or not, there was no consensus on the ideal age for disclosure of results. Some parents and caregivers pointed out that involvement of children in these discussions should depend on child’s character, level of understanding and ability to cope with the implications..
On handling findings that have familial implications, there were mixed feelings about involving other family members. Parents, especially mothers expressed fear of attribution. They thus suggested that the biological parents of the child should be the first ones to receive these results and then decide whether to involve other family members.
On the perceived challenges to return of results, parents and caregivers cited protracted delays in communicating genetics/genomics results; difficulty in tracing the child’s family, especially when the parents die and they are being cared for by other caregivers; risks of knowing unpleasant findings and paternity disputes.
Parents and caregivers offered several suggestions for the safe return of results of paediatric genomic research and these included the need to organize peer support and sensitization activities for adolescents participating in genetic studies; feedback of results should be done by a multidisciplinary team comprising of clinicians, genetic counsellors, the child and parents. All concurred that other family members should be involved at a later stage.
Informed consent and sharing of biological samples in collaborative genomic research and biobanking
On consent to future use of samples, 88.8% of the 187 researchers that participated in the study indicated that there is need to provide donors with the option to consent. 62% indicated that informed consent forms should include multiple options regarding the types and conditions of future research for which the samples may be used (tiered consent). 6.2% said that participants should only consent for the current study, and any future studies on the stored samples would require re-consent. However, the majority of researchers felt that the need to reconsent places an unacceptable burden on the researchers (62%) and is prohibitively costly (59.4%)
On informed consent experiences and practices, it was found that most principal investigators (12/15) were not well conversant with the informed consent procedures of their respective studies because they delegate this to study coordinators and nurses/nurse counsellors. Most nurses/nurse counsellors lacked basic knowledge and understanding of genetics, including the risks of genetic research.
On Information disclosure, researchers noted that genetic research is complex and oftentimes research participants do not adequately understand the information disclosed them during the consenting process. They thus recommended the use of an iterative approach that encourages consultation with family and/or people research participants trust, use of simple language, use of visual aids and other media, and objective assessment of comprehension. The also reiterated the need for translating informed consent documents into local languages and the use of peer educators. Researchers emphasized the role of community engagement in community education and sensitization, ensuring that researchers respect local cultural values and beliefs, and dispelling of superstitions and misinformation.
- The perceived challenges to the informed consent process included, the poor quality and inaccuracy of translations of ICF into local languages, inadequate understanding of informed consent, limited understanding of genetics by communities and some research team members, lack of professional genetic counselling services in Uganda, and mistrust of foreign collaborators.
On Export of human biological materials (HBM), researchers had a positive attitude towards the export of samples and expressed a desire for collaborative partnerships in genetics/genomic research and bio banking that are characterized by mutual respect and equity. However, they raised several concerns:
- They seem not to be well conversant with the guidance provided by the national ethics guidelines on bio banking and
- They all concurred that material transfer agreements (MTA) are key in the transfer of human biological materials across the national borders. However, they surmised that these MTA are unfair and tend to favour international Collaborators. They felt that local researchers and research institutions are not empowered enough to bargain favorably during MTA negotiations. They also indicated that the national ethics guidelines are vague on role of RECs in MTA and data sharing agreement development. Furthermore, they indicated that Uganda lacks appropriate enabling ethical and legal frameworks to protect the interests of local scientists and research institutions
- On sharing of the benefits of research, the researchers felt the ground was not leveled and there was neither equity nor fairness in sharing of GBR benefits in international collaborative research. They attributed this to the lack of scientific integrity and questionable research practices by collaborating researchers, lack of effective communication between collaborating partners, denial of access to shared data and samples by Northern collaborators, and felt that the oversight function of UNCST during MTA implementation is limited.
To address the issues at hand around genetics and genomics research, they made the following recommendations;
Recommendations to enhance comprehension of informed consent for genetic/genomic research and biobanking
- Escalating community engagement: to sensitize the general public and educate them on genetics research and its implications
- Iterative approach to informed consent where participants are given ample time to read/be read to consent information, ask questions, make consultations with family and trusted persons
- Encouraging the use of simple language and various media during information disclosure.
- There is need for harmonization of translations. A dictionary of translated key scientific and medical terms/concepts in research and clinical care in local languages should be developed
- Develop specific national guidelines for genetic and genomic research in Uganda.
- Research ethics committees should be trained in the basics of genetic research in order to ensure that they appreciate the ELSI and are competent enough to review genetic research.
- The use of checklists for assessing understanding of consent should become mandatory and should also be included in the national ethics guidelines.
- All stakeholders should read and understand the available national and international guidelines, policies, and regulations pertaining to genetics/genomic research and bio banking before negotiating Material transfer agreements.
- Research ethics committees should be empowered to review and monitor the execution of MTAs during research implementation, and this should be clearly stipulated in the national ethics guidelines.
- The national research regulators and individual institutions should join forces and devise mechanisms for tracking and monitoring the use of exported HBM and data.
- Encouraging meaningful involvement of communities in Material transfer agreements negotiations, particularly regarding sharing of the benefits of research.
- There should be capacity building for clinical genetics, particularly clinical geneticists and professional genetic counsellors
- Community engagement activities should be scaled up to prepare communities for the return of genetic research results as and when they are available
More about the Project
This project explored the knowledge, perceptions and experiences of stakeholders on the informed consent process, and the ethical, legal and social implication of genomic research. The goal of the project was to contribute to a better understanding of the ethical legal and societal issues associated with genomic research in low resource settings. The study employed both quantitative and qualitative methods of data collection and analysis. Prospective evaluation was done using questionnaire surveys; focus group discussions; in-depth interviews; direct observation of informed consent processes; and assessment of the quality of informed consent
This study was funded by United States National Institutes of Health through The Human Heredity and
Health in Africa (H3Africa) initiative which is spearheading bio banking and genomics research in Africa for Africa.
The study was conducted between November 2018 to 2022 by a team of researchers led by Associate Prof. Erisa Mwaka as Principal Investigator.
Research team:
- Associate Prof. Erisa Mwaka
- Dr. Ian Munabi
- Assoc. Prof. Joseph Ochieng
- Dr. Janet Nakigudde
- Prof. Nelson Sewankambo
A new study conducted in Wakiso district has determined the ideal waist circumference for detecting metabolic syndrome among Ugandan women. Study findings closely align with the International Diabetes Federation (IDF) cut-off for predicting ill health risks.
The researchers at Makerere University’s School of Public Health (MakSPH) aimed to establish an ethnically appropriate waist circumference cut-off point for Ugandan women to enhance early detection and prediction of metabolic syndrome. About 2 in 10 of the women studied in Wakiso district, Uganda, suffer from metabolic syndrome, which is associated with diabetes and heart disease.
Findings indicated that for women aged 18–49 years in the Wakiso district, 80.3 cm is the optimal waist measurement to flag potential metabolic syndrome risks.
The threshold increases with age:
• 79.9 cm for young women (25-34 years)
• 85.6 cm for mid-life (35-44 years)
• 91.1 cm for pre-menopausal women (45-49 years)
Unlike the Body Mass Index (BMI), a calculated measure of weight relative to height used to assess an individual’s weight status and potential health risks, waist measurement better detects dangerous abdominal fat linked to diabetes and heart disease.
Dr. David Lubogo, a lead researcher on this study and Senior Lecturer in the Department of Community Health and Behavioral Sciences at Makerere School of Public Health, noted that with hormonal and physiological changes making women particularly vulnerable during reproductive years, these Uganda-specific benchmarks will help clinics identify at-risk patients earlier, using just a measuring tape.
“Our findings confirm waist measurement as a powerful, low-cost tool for preventive care. While aligning with global standards, we have refined thresholds for Uganda’s context,” Dr. David Lubogo notes.
A cross-sectional study was carried out in Wakiso District from June to August 2021, involving 697 randomly selected women aged 15–49. Participants had lived in Wakiso for at least a year and underwent physical, biochemical, and anthropometric tests to help determine the prevalence of metabolic syndrome (MetS). “We excluded pregnant and postpartum women, alcoholics, smokers, and those with chronic or infectious diseases to ensure accurate results,” explained Dr. David Lubogo.
The study, published in PLOS Global Public Health, underscores the importance of age-sensitive screening in tackling metabolic diseases in sub-Saharan Africa. In response, health officials in the study area should explore practical ways to weave these findings into everyday programs for community health screening.
The study was funded by the Government of Uganda through the Makerere University Research and Innovation Fund (MakRIF) and the Strengthening Education and Training Capacity in Sexual and Reproductive Health and Rights (SET-SRHR) Project in Uganda. Other investigators included Dr. Henry Wamani, Dr. Roy William Mayega, and Professor Christopher Garimoi Orach.
Kampala, 09 April 2025— Makerere University has officially launched the Social Innovation in Health Initiative Community of Practice (SIHICOP)—a new platform designed to connect local health innovators with policymakers, donors, and researchers. The goal: to turn scattered success stories into a powerful, nationwide movement that reimagines healthcare from the ground up.
The launch, held during the 6th National Social Innovation in Health Stakeholders’ Workshop at Hotel Africana in Kampala, drew a dynamic mix of changemakers, health innovators, academics, donors, and government leaders, all rallying around one idea: that equitable, sustainable healthcare must be rooted in communities.
While Uganda has made notable progress, cutting under-five deaths by 66% since 2000, challenges remain. Fifty out of every 1,000 children still die before their fifth birthday. Nearly half suffer from stunting due to malnutrition. In rural areas, pregnant women walk for hours to reach clinics. Across the country, hospitals battle frequent drug shortages.
Dr. Phyllis Awor, Director of the SIHI Uganda Hub at Makerere University’s School of Public Health (MakSPH), emphasized the critical role of social innovation in closing healthcare gaps. “Half of Ugandan children lack basic vaccinations, and 40% face stunting. These challenges demand creative, inclusive solutions co-created with communities,” she said.
“We’ve spent a decade identifying, studying, and strengthening grassroots innovations. Through our six-month fellowship program, we train innovators in monitoring and evaluation, research, communication, impact assessment, and fundraising so their work doesn’t just survive but scales,” she said. “Today, we’re awarding them completion certificates and launching them into a vibrant community of practice.”
Dr. Awor, who is also a Lecturer and Researcher maintains Social Innovation is about solving these real problems with real people. With the support of the Swedish Embassy and the World Health Organization’s TDR program, SIHICOP, she says, will foster peer learning, capacity-building, and scaling of innovations like mobile health platforms and community-based maternal care.
Since 2017, Uganda’s SIHI hub has supported 30 homegrown innovations, impacting tens of thousands of lives. “We’ve identified 21 standout solutions so far,” Dr. Awor shared. “But if we want them to go national, we need enabling policies.”
Globally, SIHI was founded in 2014 to bring together innovators, communities, policymakers, and academics across the Global South. With 15 hubs, including Uganda’s, SIHI has documented over 200 innovations and 40 case studies that demonstrate the power of grassroots solutions to improve health systems.
Dr. Olaro Charles, Uganda’s Acting Director General of Health Services, acknowledged that bureaucracy often stifles good ideas. “Sometimes, a small change in how you look at a problem can produce the best and most marketable solution,” he said.
He spoke from experience. As a clinician, Dr. Olaro led efforts to curb drug theft and stockouts by tightening distribution and boosting accountability. “It’s not like people walk off with whole boxes,” he explained. “But if you have 300 employees and each takes just one dose… that adds up. We introduced medicine returns, round-the-clock pharmacies, and ward-level audits. At first, there was resistance, but it worked.”
Another one of his most memorable innovations was setting up a neonatal unit for premature babies while he was a Medical Superintendent. “I remember a baby who weighed less than a kilo, barely six months old, and survived. We pushed survival rates to 85%. Eventually, we ran out of space. We began asking ourselves: Where had these children been going before? Previously, these children may have died within the community. These are innovations that create real, tangible impact. And I’m sure many of the things you’re doing here are creating similar results.”
He urged the Fellows to treat their innovations like living systems: “If they survive infant mortality, they’ll live longer. These ideas deserve to grow.”
Mr. Tomas Lundström, Health Counsellor at the Swedish Embassy, spoke with deep conviction about Sweden’s long-standing investment in Uganda’s future. “For decades, Sweden has believed in Uganda’s greatest asset, its people,” he said. “Through Sida, we funded the training of over 500 Makerere staff for PhDs. I didn’t start it. I didn’t train your PhDs. The Swedish taxpayers actually funded the training. Now that wasn’t just investment; it was transformation. It’s one reason Makerere is the powerhouse it is today.”
Lundström also shared a memory that continues to shape his view of development. While inspecting UNICEF projects in Zambia in 1998, he recalled visiting five villages where only one had shown some success. A driver suggested they visit the last village, the 5th. “We went. No one was there. We waited, then a man came running, covered in dirt. He was the village chief,” Lundström recounted. “He said something I’ve never forgotten: ‘Thomas, when the rainy season comes, we can’t take pregnant women to the clinic. Do you know where I can learn to build a bridge’?”
“That was different from what I usually hear—‘Can we have some money?’ Real change doesn’t come from handouts. It starts within communities.”
But Lundström warned that international aid is under strain. “We’ve already lost a lot of funding from U.S. and other donors. Ukraine, Sudan—global crises are pulling resources away. We must get creative. We must find new ways to secure resources.”
Still, he was optimistic. “We’re seriously considering continued support for another year. We’re also pushing for deeper collaboration between Makerere and Karolinska Institutet. But it’s up to you too,” he said.
He praised Dr. Phyllis Awor and her team: “What sets them apart is not just competence, but passion. She doesn’t do this because it’s her job; she does it because she believes in it. Because everyone deserves a fair chance, a seat at the table, a bit of hope.”
Makerere University Vice Chancellor, Professor Barnabas Nawangwe, echoed those sentiments, describing the School of Public Health as the university’s “engine of change.” He noted that the School contributes to nearly 30% of all university publications—and brings in 40% of its research funding.
“That’s no accident,” he said. “Public health is critical. Without health, there is no progress. That’s why donors invest in public health issues.”
He described the social innovation initiative as a model for how academia and communities can work together, not just to publish but to transform lives. “When global rankings name Makerere the most community-impactful university, they’re recognizing what happens when scholars step beyond lecture halls. This is what happens when researchers dig deep into the ground to cultivate solutions that transcend national boundaries.
The Vice Chancellor also paid tribute to Sweden’s role in that transformation. “We cannot thank the people of Sweden enough. Their support through Sida trained over 500 of our staff to the PhD level—the largest staff development initiative I’ve seen at any university, anywhere. It came when we needed it most, after the war. That’s why Makerere stands today as a leading research institution in Africa.”
He congratulated the 2024/25 Fellows, praising their inspiring journeys, and commended Dr. Awor and her remarkable team of researchers for achieving what only world-class institutions can: “melding razor-sharp academia with the wisdom of villages, policy muscle with frontline innovations.”
By Joseph Odoi
Every newborn deserves the best start to life. Yet, in Uganda, the burden of newborn morbidity and mortality remains high. The newborn mortality rate stands at 22 deaths per 1000 live births (UDHS 2022). According to most recent UN annual estimates, Uganda records 62,000 deaths around the time of birth. Of these, 32,000 are neonatal deaths, 26,000 are stillbirths and 4,800 are maternal deaths. Majority of the newborn deaths occur within the first week after delivery- a period considered very vulnerable for both the mother and baby.
Uganda’s high fertility rate translates to about 1.7 million births per year; and of these 250,000 babies need special newborn care as they are either born too small or fall sick within the first month of life. This has placed a huge burden on the country and strained the already limited investment for neonatal care.
Despite national efforts, newborn deaths continue to account for nearly half of all under-five deaths in Uganda, according to the Uganda Demographic and Health Survey (UDHS) 2022.
To contribute to addressing this challenge, a coalition of institutions namely; Makerere University School of Public Health, Baylor Foundation Uganda, Adara Development Uganda, Nsambya Hospital, and the Ministry of Health with funding from ELMA Philanthropies launched a national health systems strengthening initiative known as the Uganda Newborn Programme (UNP) in 2022. This program uses a regional approach to improve newborn care in three regions of Uganda namely Kampala, North Central and Western regions.
According to Dr. Monica Okuga, the Uganda Newborn Programme Coordinator at Makerere University School of Public Health (MakSPH), the Uganda Newborn Programme (UNP) made huge strides in providing quality newborn care in 36 health facilities across the three regions of Uganda.
Uganda New Born Programme Achievements
‘’Under the UNP, there have been so far many achievements. Institutional neonatal mortality rate has reduced in the facilities where the program is implemented and this has contributed to overall reduction in neonatal mortality in the regions. For example, Institutional neonatal mortality reduced to 7/1000 and 2/1000 live births by the end of Year 2, down from the baseline rates of 8.4/1000 and 11.9/1000 in Bunyoro and Tooro, representing reductions of 16.7% and 85.3% respectively’’ Dr. Okuga stated.
Dr. Okuga further explained that, ‘’Overall asphyxia case fatality rates across program areas have also reduced from 8.9% to 5%; adherence to infection prevention and control measures has improved across the facilities; and the quality of newborn care provided has also improved.
In addition to revamping many newborn care units, Dr. Okuga revealed that the programme supported the construction of newborn care units, citing Kyegegwa Hospital, Buliisa General Hospital, Masindi General Hospital, and Kyangwali HCIV.
In line with the SDGs programme objectives, specifically SDG 3; Good Health and Well-Being, Makerere University School of Public Health, together with partners including the National Planning Authority (NPA), UNICEF, FHI360, and the Ministry of Health, produced the Situation Analysis of Newborn Health in Uganda-2023 update.
This document has now been taken up by the Ministry of Health and is being used to develop a strategy for implementing the suggested recommendations therein, as well as costing the investment for improving newborn health in Uganda.
The previous newborn situation analysis was conducted 17 years ago in 2008’’ she explained of programme contribution at a multi-sectoral level
Establishment of Uganda’s First Breast Milk Bank
Still under this programme, the first ever Breast Milk bank was established at Nsambya hospital with other donor milk satellite sites at Mengo, Rubaga, Kibuli and Naguru hospitals in Kampala. This donor breast milk has benefited over 275 babies across Kampala and its neighboring districts.
Hospital-to-Home (H2H) Initiative
Another innovation that has been scaled up through the programme is the Hospital to Home (H2H) initiative by Adara Uganda. While many newborn interventions focus primarily on in-hospital care, the Uganda Newborn Programme, in partnership with Adara Development Uganda, pioneered the Hospital-to-Home (H2H) Model, extending its newborn care continuum to the household level. This innovative model ensures that high-risk newborns continue to receive vital support after hospital discharge, addressing the gaps in follow-up care that are common in low-resource settings.
According to Beatrice Niyonshaba, Deputy Director of Maternal, Newborn, and Child Health at Adara Development; “In Uganda, many families struggle to return for follow-up visits due to cost, transport challenges, and lack of caregiver awareness. The H2H model addresses this by involving caregivers early, equipping them with knowledge on newborn danger signs, and ensuring post-discharge follow-up through community health systems like village health teams.”
She adds, “The model not only reduces post-discharge mortality but also builds trust and ownership among families, which is critical but often an overlooked aspect of newborn survival in low-income settings. ‘’We also run regular community sensitization and awareness initiatives about the causes and survivability of small and sick newborns, preventative measures, as well as the services”. The model was initially piloted at Kiwoko Hospital, with strong support from both healthcare staff and the community. This phase allowed for continuous refinement and strengthening of the model, ensuring it met the needs of both families and healthcare providers.’’ Ms. Niyonshaba explained of the H2H Model uniqueness
Currently, the model is being implemented in Nakaseke hospital, a government facility. This will provide insights for scale up to other government facilities. The programme has seen tremendous success due to the engagement and motivation of CHWs, who are provided with incentives, extensive training, and ongoing support. Regular check-ins and monthly meetings ensure these workers remain accountable and connected to the Programme’s objectives.
Challenges in Newborn Care
According to Dr. Monica Okuga and Prof. Peter Waiswa, the Uganda Newborn Programme team lead from MakSPH, in spite of the many achievements, several challenges persist. They explain that many health facilities in Uganda were built without infrastructure to support Newborn Care Units (NCUs). There are no standard floor plans for these units. In many facilities, the neonatal care units are housed in improvised rooms, while in some cases, completely new NCUs are built.
However, even where NCUs are present, they are often let down by an unstable power supply, despite the fact that most equipment in the NCUs require consistent electricity to function. In addition, there are other health system challenges such as insufficient drug supplies from the government, inadequate staffing, and the low involvement of medical officers in neonatal care. Internal rotation of already trained nurses to other units further worsens the situation. Other issues include untimely or late referrals of mothers and babies, as well as challenges with the low quality of data produced in these units.
In terms of lessons learnt while implementing the UNP, The Uganda Newborn Programme team observed and noted several key lessons during the implementation of the programme
- The importance of leadership engagement in the uptake of interventions is very critical. The leaders to be engaged not only include those at the facility level but also those at the district level. The support of political district leaders such as the Chief Administrative Officer (CAO) is also very crucial. One way of engagement is through sharing performance dashboards with key indicators to the District Health Officers (DHOs), CAO, and Health Facility In-charges.
- There is a need for continuous engagement of district leadership for sustainability in public health facilities, especially the human resource aspect for established Newborn Care Units (NCUs).
- There is a need to intervene across the board/spectrum of the health system. Addressing one challenge, for example, the provision of equipment, may not result in the required benefits without addressing human resources and skills.
- Using a regional approach to care, which includes all hospitals and high-volume health centres, is a more rapid and cost-effective way to scale up maternal and newborn care. It also improves access, quality, and referral, thus reducing unnecessary mortality.
- Regional Local Maternity and Neonatal Systems (LMNS) provide avenues/platforms to share lessons and share feedback to teams/facilities on gaps identified.
- Targeted mentorships not only maintain skills but also support teams in innovating for problem-solving.
- Continuous engagement of medical officers in facilities creates buy-in and brings them on board to support and bridge gaps in newborn care in the neonatal care units.
In terms of sustainability, the team stated that the programme’s design took into account the potential for continuation beyond the initial funding from ELMA Philanthropies. From the outset, the Ministry of Health was actively involved in the co-creation of the programme. The programme also made effective use of existing staff and infrastructure to enhance the quality of newborn care. While there was occasional catalytic provisions of drugs and equipment, the programme primarily relied on the government’s drug supply and delivery systems to ensure long-term sustainability.
About The Uganda Newborn Programme (UNP)
The Uganda Newborn Programme (UNP) has been actively working since its launch in July 2022, with the goal of significantly improving the care for small and sick newborns across the country. With support from ELMA Philanthropies, the programme has brought together a consortium of partners, including Makerere University School of Public Health, Baylor Uganda, Adara Uganda, and Nsambya Hospital, in collaboration with the Ministry of Health.
The programme is focusing on 20 high-burden districts across three regions of Uganda ie Western, Kampala, and North-Central, serving approximately 1.5 million births annually. Since its inception, the programme has been making strides in enhancing the capacity of health facilities, including the refurbishment and equipping of 30 specialized neonatal care units. These units are designed to meet the needs of small and sick newborns, in line with the National Essential Newborn Care (NEST) Toolkit.
Key activities that have been rolled out include
- Training and mentorship of Health Workers; More than 800 health workers have been trained and mentored in essential neonatal care practices such as neonatal resuscitation, Kangaroo Mother Care (KMC), Continuous Positive Airway Pressure (CPAP), and infection prevention and control. This has significantly improved the clinical competencies of healthcare providers in the management of small and sick newborns.
- Strengthening Infection Prevention and Control; The programme has focused on improving infection control measures at hospitals, which is critical in managing the high rates of sepsis and other infections among newborns.
- Effective implementation of newborn resuscitation and warm transport: This includes establishing standardized protocols and providing essential equipment like mabu bags plus masks, CPAP machines
- Improving Data Utilization; Efforts have also been made to ensure that health workers are using data-driven evidence for decision-making. Monthly perinatal death audits and support for data quality review have allowed for continuous improvement in service delivery.
- Enhanced Postnatal Care; Community-based postnatal care using Village Health Teams (VHTs) being trained to conduct home visits for newborns discharged from neonatal units. This helps ensure that infants receive timely follow-up care in the critical days after discharge.
The programme is set to run up to July 2025, and by then, it aims to have reached 120,000 small and sick newborns, helping to reduce newborn mortality by 40% in the target regions.
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