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Genetics & Genomics Research Dissemination; Makerere Bioethicists Emphasize the Importance of Community Engagement

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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.

The Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki sharing findings and recommendations from the study.
The Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki sharing findings and recommendations from the study.

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.

Dr. Moses Ochan at the event.
Dr. Moses Ochan at the event.

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
Some of the participants during the dissemination.
Some of the participants during the dissemination.

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.
Prof. Nelson Sewankambo at the dissemination. He appreciated the quality of genetics and genomics study led by Prof. Mwaka Erisa.
Prof. Nelson Sewankambo at the dissemination. He appreciated the quality of genetics and genomics study led by Prof. Mwaka Erisa.

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

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From Working as a Houseboy to Being the Best in School: Ssembuusi’s Story of Overcoming Hardships & Achieving Success

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Mr. Allan Ssembuusi-Mayengo beat all odds to become a First-Class Graduand of the Bachelor of Environmental Health Sciences (BEHS) of Makerere University's 73rd Graduation Ceremony due to be held from 13th to 17th February 2023.

Against all odds, Allan Ssembuusi-Mayengo rose from a house boy to a First-Class student. In this episode of Makerere University’s week-long 73rd graduation ceremony slated to run from February 13-17, 2023 we present to you a story of a determined young man who never let his circumstances define him, and how he achieved the impossible through hard work, perseverance and the power of prayer. He will graduating as a second best in his class at Makerere School of Public Health (MakSPH) with a Cumulative Grade Point Average (CGPA) of 4.42.

With determination and a willingness to take on any job that came his way, Ssembuusi struggled through financial hardship to make a better life for himself. From selling water at the new taxi park to working as a phone repairman and even starting a mobile manicure and pedicure business, he used his entrepreneurial spirit to support himself through University, despite the challenges he faced he carved out a path to success, proving that with grit and perseverance, anything is possible.

Born on 15th February 1996 in Kyabiiri, Kibinge Subcounty, Bukomansimbi District in Greater Masaka to Wilson Mayengo and the late Sarah Nantongo, Ssembuusi is the 4th born in his family.

School life

For the better part of his childhood, Ssembuusi stayed with his step-mother Ms. Margret Namuddu in Kawanda, Wakiso District after a separation between his mother and father. His mother later passed away while he was in Senior four (S.4). With obstacles in his path he hopped from school to school sometimes to dodge school financial requirements.

As early as 2004, he had started school at Bituntu Church of Uganda Primary School in Masaka. He only completed his Primary One class before he was transferred back to Nalujja primary school in Kawempe in Kampala, where he had a short stint of two academic terms.

In 2005, his family shifted to Kawanda, a small town located north-west of Kampala, the Uganda’s capital town. While here, he completed his Primary Two (P.2) at Little Angels Primary School, a private school. The comfort was short lived as he would later relocate to Nakyessanja Church of Uganda Primary School from P.3 until he sat his Primary Leaving Examination -PLE in 2010.

“This was so hard for me, we didn’t even have lunch at school. In the morning, our step-mom would prepare for us tea with acoil bun (Mwana akaaba) bread of Shs. 100, and this would take us all day until our next meal in the evening. My stepmom always had dinner ready whenever we returned from school. It was hard being at school, seeing your colleagues going to the canteen to buy eats during break and lunch time when you are in class “eating shadows” but still I managed to perform well. I started being in the first position in class in P.3 up to when I finished P.7. All these challenges gave me determination and courage to work hard so that I get a better future,” recollects Ssembuusi.

While in P.3, Ssembuusi was top of his class in promotional examinations but he could not access his report card because his parents had failed to pay UShs 2,000 (approximately $0.54).

“While appearing at end of term School assembly, I was announced as being in the first position—the School administration used to announce the 1st, 2nd and 3rd place holders. We didn’t have that money at home so I didn’t pick my report. With this in mind however, I just reported to P.4 at the start of the next year. The headmaster however, came reading out names of those who didn’t pick their reports, and we were all taken back to P.3,” he says.

He recalls crying endlessly by this act but would only console himself knowing the situation back at home and that his father genuinely did not have the money; “We used to eat cassava flour with avocado. We had an Avocado tree at home and we would temporarily forget hunger in seasons the tree would, bear fruits. We would pick avocado and mash it as the sauce.”

As luck would have it, Ms. Grace Nakidde, his teacher provided him the required Ushs.2,000 that granted him access to his report, and then became officially promoted to the next class in 2006.

Ssembuusi, was frequently engaged in various household tasks, which caught the attention of a neighbor. At the age of 12, while in Primary Five, he went to work for this neighbor as a houseboy to earn money for school fees.

“At the time, we were paying around Ushs 10,000 (approximately $2.72), for remedial classes and Ushs 5,000 for lunch. I used to work day and night, but I stayed focused because I wanted to study. I would go to School barefooted. At P.7, I got 9 aggregates and this was the only first grade at my school.”

Ssembuusi’s excellent performance earned him a bursary to attend Central College Kawempe, a school owned by a relative of his employer. Despite this financial aid, he still had to pay for some school materials, which prompted him to continue working at home. “I would wash cars for our neighbor every day to buy books, but I still excelled and was the best in all three terms of S.1,” he said. However, due to the mistreatment he experienced as a houseboy, Ssembuusi confided in his parents, who then spoke to his employer. Unfortunately, this led to the loss of his bursary.

“Since my parents were unable to pay for my education at Central College Kawempe, they transferred me to Luteete Senior Secondary School in Luweero. I am grateful to Mrs. Kiwanuka who, through our shared faith at Elim Pentecostal church in Kawanda, connected me to Luteete where I was able to obtain a half bursary. This required me to raise Ushs 150,000 (approximately $40.82) on my own. Despite this, things were still difficult for me, as I often only had Ushs 20,000 (approximately $5.44) to last me through the entire term.”

Ssembuusi states that the school’s provision of lunch and supper helped him stay focused. He adds, “Sometimes I sold my lunch to afford necessities like books and pens, but I still excelled and remained the best throughout my stay, up to S.4. I scored 13 out of 8 aggregates, the best performance in the school’s 60-year history. I achieved it through hard work and prayer, even fasting dry for 3 days.”

After getting his Uganda Certificate of Education (UCE) results, Ssembusi moved to Wampeewo Ntakke Senior Secondary School along Gayaza Road with the help of his former head teacher Mr. Mike Ssekaggo. He says, “I scored 12 points in BCM/ICT and I remember getting a D1 in Biology Paper 3. I was also the founder and pioneer of the school’s Science Club.” After finishing S.6, he found a job as a porter at a construction site near his school. He adds, “Although students saw me working there, I was determined to survive. Later, my former head teacher helped me get a job as a canteen attendant at his school, where I stayed for 1 and a half years.”

Failing to join University and Resorting to Barber and Taxi Tout

Ssembuusi had always dreamed of going to university, but his journey was not an easy one., Despite sitting for his Uganda Advanced Certificate of Education (UACE) in 2016 with hope to join a university in 2017, he was not admitted to any of the institutions he applied to on his application forms. He lost that year of 2017 and decided to try again in 2018. “I had understood my points, and weights better and thought by trying on a Diploma, I would get admission. I applied for a diploma in Education at National Teachers College NTC Kaliro, but was not admitted once again”

Feeling defeated, Ssembuusi left his job as a canteen attendant and returned home, but struggled to find any opportunities. However, things still weren’t working out and he found himself living with his uncle who was a barber and taught him the trade. He also started working as a conductor on a taxi route from Jinja road-Kawanda-Matugga, where he used to meet his old teachers and colleagues. He felt like a failure, but still held on to hope for better opportunities.

“We used to ply the Jinja road route. I grew up on this route and so I had mastered it. While in this trade, I would meet my teachers, my former colleagues, the students I used to discuss for. For once, I felt like I was a total failure,” says Ssembuusi.

Vehicles at the  Old Taxi Park in Kampala on April 19, 2022. PHOTO /SYLIVIA KATUSHABE
Vehicles at the  Old Taxi Park in Kampala on April 19, 2022. PHOTO/ Daily Monitor/SYLIVIA KATUSHABE

One day while operating as a taxi tout in Wandegeya, he bumped into an old friend, Jackline Nankya, who in 2020 graduated from MakSPH. They had studied together at Wampeewo Ntakke Senior Secondary School. Concerned about him she asked for his contact to check on him. Ssembuusi explained his situation and Jackline told him about the Government Loan Scheme program, a fund that awards study loans to Ugandan students seeking to pursue Higher Education but are financially constrained. She helped him apply for a course in Environmental Health Science, which he made his first choice, and also helped him apply for the Government Loan Scheme.

Ssembuusi was in a dilemma, he had even prepared to go to the United Arab Emirates to do “Kyeeyo” (cheap employment for immigrants to the developed world) with some sisters that were already there. His parents were excited about the prospect of him making money. “I didn’t tell them [parents] when I applied. I told them when I was admitted. I was in a dilemma and in fear of how my parents would react to me leaving an opportunity to work and provide for them.”

He sought advice from a few people, including his boss in the taxi business, before ultimately telling his parents. To his surprise, they were overjoyed when he finally shared his plans with them. They had the assumption that Makerere University was the only university in Uganda.

Life at MakSPH

Determined to succeed, Ssembuusi used all the money he made working in the taxi to buy the requirements needed for his first year. He was so passionate about his studies that he even joined a week before his colleagues and was voted unopposed as class representative. “This is where my journey to perform well started,” he says.

Adding that; “After our first lecture with Ms. Ruth Mubeezi, I felt deeply inspired. I approached her after class and shared my struggles with her. Her words of encouragement and assurance that I would be able to manage school, gave me the courage and determination to push forward. And that’s how I embarked on my journey towards achieving a first-class degree, starting off with a strong 4.6 GPA in my first semester.”

Allan Ssembuusi, (second left) discussing with classmates at Makerere School of Public Health last year. Photo by Davidson Ndyabahika.
Allan Ssembuusi, (second left) discussing with classmates at Makerere School of Public Health last year. Photo by Davidson Ndyabahika.

He commuted to school in his first semester, but during a brief holiday before the second semester, he decided to stop commuting and go back to his taxi business in the Old Taxi Park to earn money for accommodation. He was able to get some money and temporarily moved into Nkrumah Hall, one of the halls of residence for male students admitted to Makerere University, named after the great pan Africanist Nkwame Nkrumah of Ghana with a friend Kelvin Langat.

“I wanted to go back to work as a conductor to earn money for accommodation but it was the festive season so things didn’t work out. I decide to sell sugarcanes in Old Taxi Park because most people there, knew me. I used to contribute something and stay with him on the same bed before COVID came in and we had to leave campus,” a teary Ssembuusi recalls.pEDICURE

COVID-19 and Ssembuusi’s campus nail business

As the COVID-19 pandemic swept the world, it brought with it a host of challenges for students like Ssembuusi. With lockdowns in place and classes conducted online, Ssembuusi was forced to find ways to make ends meet. Like many students, Ssembuusi found himself struggling to afford the costs of accommodation, and everyday living expenses.

“I went to New Taxi Park (the old one was closed for renovation at this time) and sold water there. It was a tough moment, because I found so many classmates there boarding taxis to go about their business. I wanted to quit, but I also still wanted to survive,” he says.  

The Student Loan Scheme is a cost sharing initiative. The Loan strictly covers the academic component, i.e., Tuition fees, Functional fees, Research fees, Aids and Appliances for Persons with Disabilities (PWDs). For Ssembusi’s case, the loan covered Ushs1.8m fees inclusive of functional fees and he is indebted to the loan scheme; “I am thankful for the Student Loan Scheme for enabling me to continue my education, however, they have not yet paid for my last three semesters, preventing me from accessing my transcript until the debt is fully cleared. Despite the delay in payments, they would still allow us to sit for exams with the assurance that they would pay later.”

It was during this time that Ssembuusi stumbled upon an unexpected opportunity. At a friend’s home, he discovered a salon offering manicures and pedicures. Intrigued, he asked the owner to teach him the trade, and soon found himself learning the skills needed to set up his own mobile manicure and pedicure business.

With the support of his classmates, Ssembuusi’s business quickly took off. Working on almost all of his female classmates, Ssembuusi found himself juggling the demands of her coursework and his business. But he was committed to making it work, and with the help of a loan from a friend, he was able to purchase the equipment he needed to keep his business running.

“I have been doing pedicure and manicure, and all my clients have been my colleagues. I was charging 10,000 to 30,000 Ushs for gel nails. People perceive it as a “low-key job”, and I am sure it’s hard for most campusers to do this kind of work especially on their classmates. I know some people come from advantaged families, but for those of us who have been disadvantaged, please don’t look down on any opportunities or jobs that will help you raise some money to sustain you,” he says.

Allan Ssembuusi with his classmate Martha Nabukyu both class representatives of their 2019 Cohort.
Allan Ssembuusi with his classmate Martha Nabukyu both class representatives of their 2019 Cohort.

“I think I have worked on almost all my female classmates. The business boomed, I started getting recommendations but it was a challenge on my side to attend lectures and also attend to clients. My course is a full day course, and being a course representative, I had to be around. I managed to schedule my clients in the evenings and over the weekends when I worked all day.

Ssembuusi has throughout his school life struggled with self-doubt and imposter syndrome, but along the way found ways to overcome it through self-improvement and taking advantage of opportunities. He was active in the school community, serving as a class representative and holding leadership positions in Makerere University Environmental Health Students Association (MUEHSA).

He found success in extracurricular activities, such as participating in medical camps and running events. After finishing his course, Ssembuusi sought guidance from his mentors and ultimately landed a volunteer position under the mentorship of Dr. David Musoke, a Senior Lecturer in the Department of Disease Control and Environmental Health at Makerere University School of Public Health (MakSPH). His future goal is to pursue a Masters and eventually a PHD in academia and research. He encourages others to take advantage of opportunities in order to be successful.

Allan Ssembuusi seated extreme left next to the Dean, Prof. Rhoda Wanyenze, Associate Prof. Esther Buregyeya, the Head, Disease Control and Environmental Health Department, Mr. Ali Halage the Coordinator of the Bachelor of Environmental Health Sciences and the Class.
Allan Ssembuusi seated extreme left next to the Dean, Prof. Rhoda Wanyenze, Associate Prof. Esther Buregyeya, the Head, Disease Control and Environmental Health Department, Mr. Ali Halage the Coordinator of the Bachelor of Environmental Health Sciences and the Class.

To achieve a first class, one must put in hard work and strive to do their best. “I didn’t set out to achieve a first class, but I now understand its value. A lecturer once told us, ‘Don’t listen to those who say a first class isn’t worth it – if you can earn one, go for it.’ That’s my advice to my peers – aim for the best and don’t be discouraged. I didn’t actively pursue a first class, but my efforts paid off in the form of this distinction,” says Ssembuusi.

He adds; “Mr. Frederick Oporia, who taught me inspection, court etiquettes, and environmental health legislation, is my standout lecturer and role model. Currently the Head of Trauma, Injury, & Disability (TRIAD) unit, he continues to inspire me. Additionally, Dr. David Musoke, who is my mentor, is someone I look up to and strive to emulate in my work.”

Allan Ssembuusi with classmates in a group photo on Thursday, ‎1 ‎September ‎2022.
Allan Ssembuusi with classmates in a group photo on Thursday, ‎1 ‎September ‎2022.

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METS Newsletter December 2022

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DHIS2 Academy participants take a group photo with the State Minister for Primary Education, Dr. Joyce Kaducu (Front Row in Gomesi) at the workshop.

The Monitoring and Evaluation Technical Support (METS) Program is a 5-year CDC-supported collaboration of Makerere University School of Public Health (MakSPH), the University of California San Francisco (UCSF) and Health Information Systems Program (HISP Uganda).

Highlights of the METS December 2022 Newsletter

  • DHIS2 Academy 2022
    • The workshop held at Namanve, Uganda from 28th November to 3rd December 2022 with 105 participants from 17 countries representing different non-Governmental organizations (NGOs), Ministries of Health, and Education.
    • The Design for Data Use Academy was a practical training program aimed at supporting facilitators and participants to work together to learn the principles and skills for good system design.
    • State Minister for Primary Education, Dr. Joyce Kaducu emphasized the need for cross sectoral learning and designing sustainable systems that can be managed in-country thus building capacity.
  • Scale up of electronic Case-Based Surveillance System (e-CBSS)
    • The electronic Case-Based Surveillance System (e-CBSS) is an aggregate system that records individual Tuberculosis (TB) and Leprosy patient data from the time they enter a health facility; a diagnosis is made, patient is registered and enrolled onto treatment, their contacts are followed up, and it continues to report all events until they complete TB and Leprosy treatment.
    • As of December 2022, over 447 health facilities out of the 1674 TB diagnostic and treatment units (DTUs) were using the system in the regions of Acholi, Ankole, Bugisu, Bukedea, Teso, Kigezi, South and North Central, Kampala, Lango, Karamoja, West Nile, Toro, Busoga and Bunyoro.
    • The goal for 2023 is to have 800 health facilities enrolled onto the eCBS system.
  • Annual National Healthcare Quality Improvement (QI) conference
    • The Ministry of Health held the 9th National Quality Improvement (QI) conference from 13th to 15th December 2022 at Speke Resort, Munyonyo under the theme Supervision, Monitoring, Coaching & Mentorship for a Resilient Health System – the role of Quality Improvement.
    • METS team participated in the conference and made several contributions; as a panelist, Dr. Alice Namale shared views on how Implementing Partners are impacting QI implementation at service delivery level; Evelyn Akello chaired a mid-morning session on Special Groups, Dr. Simon Muhumuza presented on ‘Improving Client Satisfaction in Uganda’s Health Sector’; Julius Sendiwala made a presentation on ‘Quality Improvement of PMTCT And EID Services In Health Centre II Countrywide’; and Wilfred Soyekwo presented on ‘Mothers’ Experiences on Receiving Male Midwives During Birth’.
  • Using digital integration to manage Decongestion at Health facilities
    • To decongest the facilities, the Ministry of Health (MoH) adopted Differentiated Service Delivery Models (DSDM) where clients receive care based on a model that best suits them.
    • To ease exchange of information between patients receiving care at the pharmacies attached to the health facilities, a collaboration between MoH, METS, Infectious Disease Institute (IDI) Academy and Africa Resource Centre (ARC) was formed to create a platform where data can be exchanged between systems to reduce on the burden of tracking patients on paper.
  • Highlights from METS Retreat
    • End of year strategic plan meeting
    • Soccer match
    • Stephen Senkomago’s Sendoff

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Save the Date: Non-Communicable Diseases (NCD) Symposium 2023

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Makerere University College of Health Sciences (MakCHS) NON-COMMUNICABLE DISEASES (NCD) SYMPOSIUM, 4th March 2023, 9:00AM to 6:00PM EAT, Davies Lecture Theatre, MakCHS.

The Makerere University College of Health Sciences (MakCHS) will host the NON-COMMUNICABLE DISEASES (NCD) SYMPOSIUM 2023.

Date: 4th March 2023 Time: 9:00am to 6:00pm

Objective:  Provide a forum for dissemination of advances in different NCDs with regard to training and research and their impact on community in Uganda and East Africa.

Theme: Advances in NCD Training, research and community impact

Venue: Davies Lecture Theatre at MakCHS and Online

Sub Themes:

  1. Cardiovascular diseases
  2. Renal Diseases
  3. Diabetes Mellitus & Other Endocrine Disorders
  4. Cancers
  5. Mental Health Disorders
  6. Respiratory Diseases and Lung Health
  7. Sickle Cell Disease and Other Haematological Conditions
  8. Interactions between NCDS and Infectious Diseases

Target Audience: Researchers, Academics, policy-makers, practitioners and Health Advocates with special interest in NCDS.

NOTE: Attendance is free

Presentations: Invited abstracts on NCDS will be presented orally while others will be poster presentations.

Exhibitors: All NCD stakeholders are invited to exhibit their work

Registration for participants: http://rb.gy/tlqma8

For more information: Dr. Innocent Besigye; Email: makncdsymposium2023@gmail.com; Tel: +256-782-499852

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