| Literature DB >> 31921282 |
Victoria Nembaware1, Nicola Mulder2.
Abstract
The potential of genomic medicine in improving the quality of healthcare both at population and individual-level is well-recognized globally. However, successful adoption of genetic and genomic evidence into clinical practice depends on training the healthcare workforce and clinical researchers in genomic medicine. Due to limited expertise in the medical genetics and genomics field, widespread uptake largely depends on task-shifting for the implementation of genomic medicine implementation to key healthcare professionals such as nurses. Their knowledge would be developed through courses aimed at professional development. Globally, trainers, and training initiatives in genomic medicine are in early stages of development, but resource limited settings such as the African continent face additional logistical and institutional challenges. The African Genomic Medicine Training (AGMT) Initiative was conceived during a combined conference of the African Society of Human Genetics (AfSHG) and the Human Heredity and Health in Africa Consortium (H3Africa) in 2016, Senegal, in response to the needs for developing knowledge and skills in genomic medicine. AGMT was established to implement a sustainable genomic medicine training initiative primarily for healthcare professionals who are not geneticists but are nurses, doctors, and pharmacists in Africa. This paper reports on the establishment of the AGMT initiative and the strategies developed and piloted by this initiative in designing and implementing an accredited frame-work and community-based blended learning course for nurses across 11 African countries. The global implementation experiences, outcomes and lessons learnt are highlighted. The AGMT initiative strategy takes advantage of existing research consortia and networks to train and create a pool of trainers and has adopted evidence-based approaches to guide curriculum and content development/adaptation. This initiative established the first Africa-wide online blended learning genomic medicine course which forms the basis from which to develop courses for other healthcare professionals and the wider public.Entities:
Keywords: Africa; Kern's six step model; competencies; genomic medicine; nurses; precision medicine; training
Year: 2019 PMID: 31921282 PMCID: PMC6934054 DOI: 10.3389/fgene.2019.01209
Source DB: PubMed Journal: Front Genet ISSN: 1664-8021 Impact factor: 4.599
Figure 1Illustration of key target trainees in genomic medicine for AGMT in the near future. Healthcare workers, patients, and the general public.
Personas used to create and map competencies.
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| Getrude is 29 years old. She holds a Diploma in Nursing and has 5 years’ experience. She is registered with the Malawi Nursing Council. She was recently recruited as a research nurse in a clinical study being conducted at the Malawi Medical College of Medicine and Nursing. Her current duties include: |
| • Recruiting volunteers for a clinical and genetics research project. The volunteers will be recruited from the Yao tribe. |
| • Engaging with some villages from the Yao tribe |
| • Administering of informed consent |
| • Piloting and implementing the Case Reporting Forms in collaboration with the Study Coordinator |
| • Overseeing translation of the Informed Consent Forms and the Case Reporting Forms into the Chiyao language |
| • Taking blood specimens from children and making sure these are stored as per the Standard Operating Procedures |
| • Record keeping and other administrative duties as per SOPS provided. |
| • Reports to the Study Coordinator |
| • Referring study participants to the local clinic for treatment |
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| Melody is 40 years old and holds a Senior Nurse Position in a district hospital. She holds a Bachelor degree in Nursing with two postgraduate diplomas in midwifery and HIV & AIDS Care. She is registered with the South African Nursing Council (SANC). She manages the day-to-day nursing operations within the midwifery department. She has 8 years experience in nursing. Her role covers the areas below: |
| • Maternal health; |
| • Reproductive health (including genetic counselling); |
| • Neonatal/child health (including genetic counselling) |
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| Coordination of patient care. |
| Patient consultation, counselling and recommendation of treatment plans this includes the following clients: |
| • adherence counselling to avoid drug resistant strains of HIV, TB and other infectious agents |
| • pregnant women |
| • those with severe drug responses |
| • Providing consultation and advice to other nurses as a specialist practitioner |
| • Individual and team supervision. |
| • Ensure adherence of the unit to hospital and government policies and guidelines as they relate to nursing procedures, standards and practices, administrative and budgetary management. |
| • Working in collaboration with other healthcare professionals when they are available. |
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| • Douglas is a 42-year-old Community Health Nurse who holds a 4 year Diploma in Nursing with 10 years’ experience. He works at a clinic in a farming community in Nigeria providing nursing care, health counselling, screening and education to individuals, families and groups in the community with a focus on health promotion. |
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| • Identifying health care needs, priorities and problems of individuals, families and communities. |
| • Referring individuals or families in need of specialized care or hospitalization |
| • Coordinating health care interventions at community level. |
| • Coordinating the care of patients in community settings in consultation with other health professionals and members of health teams. |
| • Detects high risk factors amongst community members, developing and implementing care plans for the biological, social, and psychological treatment of patients in collaboration with other health professionals. |
| • Planning and providing personal care, treatments and therapies including administering medications, and monitoring responses to treatment or care plan. |
| • Planning and participating in health education programmes, health promotion and nurse education activities in clinical and community settings. |
| • Providing information about prevention of ill-health, treatment and care. |
| • Supervising and coordinating the work of other nursing, health and personal care workers |
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| She holds a Bachelor degree in Nursing. She is registered with the South African Nursing Council as a Nurse (general, community, psychiatry) and midwife. She is currently working in an adult medical ward. |
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| • Conducts individualized patient assessment, prioritizing data collection based on the adult or elderly patient’s immediate condition or needs within time frame specified by governing policies, procedures or protocols. |
| • Develops individualized plans of care patients reflecting on collaborations with other members of the healthcare team. |
| • Performs appropriate treatments as ordered by physicians in an accurate and timely manner. |
| • Performs therapeutic nursing interventions as established by individualized plan of care for the adult or elderly patient and his/her family, taking into account the patient’s family history. |
| • Provides individualized patient/family education customized to the adult or elderly patient and his/her family. |
| • Documents patient assessment findings, physical/psychosocial responses to nursing intervention and progress towards problem resolution. |
| • Initiates emergency resuscitative measures according to adult resuscitation protocols. |
| • Maintains confidentiality in matters related to patient, family and healthcare staff. |
| • Provides care in a non-judgmental, non-discriminatory manner that is sensitive to the adult or elderly patient’s and family’s diversity, preserving their autonomy, dignity and rights. |
| • Reports patient condition to the multidisciplinary team during each shift. |
| • Maintains current competency in General Nursing |
| • Keeps up to date with current research evidence in order to change policies and procedures to improve healthcare outcomes |
Suggested nurse competencies mapped to nurse personas.
| Competencies | No. | Competencies | Melody | Douglas | Getrude | Erensia | Recommended Competency to target |
|---|---|---|---|---|---|---|---|
| Professional responsibility | 1 | Ability to engage in reflective practice about one’s own beliefs and values related to patient care that integrates genetics and genomics. | 3, 3, 3 | 1,1 | 3,2,3 | 2,2 |
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| 2 | Articulate one’s roles and boundaries of one's own professional practice in relation to genetics/genomics. | 3, 3,3 | 3,3 | 3,1, 3 | 3,3 |
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| 3 | Knowledgeable about relationships which exist between human and/or pathogen genetics, genomics and the environment. | 1, 2,1 | 2,2 | 3,2, 3 | 2,2 |
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| 4 | Seek coordination and collaboration with an interdisciplinary team of health professionals. | 3, 3,3 | 3,3 | 3,1, 3 | 3,3 |
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| Patient Assessment and Care | 5 | Know and express the difference between clinical diagnosis of disease and identification of genetic predisposition to disease (genetic variation is not strictly correlated with disease manifestation). | 3,2,2 | 1,1 | 3,2,3 | 2,2 |
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| 6 | Ability to keep up to date with new research evidence in order to understand the importance of Genetics in viral and bacterial infections and treatment regimes. | 2,3,2 | 0,0 | 2,0,2 | 1,2 |
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| 7 | Demonstrate ability to collect personal, medical and family history that includes genetic/genomic as well as environmental risks. | 3,3,3 | 3,3 | 3,2,3 | 3,3 |
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| 8 | Ability to incorporate into the inter-professional plan of care the need for further genetic/genomic evaluation or other risk management interventions in collaboration with the client. | 3,2,3 | 2,2 | 2,1,2 | 2,2 |
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| 9a | Develop health promotion/disease prevention material that considers genetic and genomic information. | 2,2,2 | 2,2 | 2,3,2 | 2,2 |
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| 9b | Apply health promotion/disease prevention practices that consider genetic and genomic information. | 2,2,2 | 2,2 | 2,3,2 | 2,2 |
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| 10 | Use ethical principles when deliberating genetic/genomic issues of decision making, privacy, confidentiality, informed consent, disclosure, access and personal impact. | 3,3,3 | 3,3 | 3,3,3 | 3,3 |
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| 11 | Demonstrate use of language and genetic counselling skills appropriate to the client's level of understanding and developmental age when explaining genetic and genomic information. | 3,2,3 | 2,2 | 3,3,3 | 2,2 |
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| 12 | Ability to integrate best evidence, clinical judgement, client preferences, and family implications in planning genetic and genomic focused individualised care. | 3,2,1 | 2,1 | 3,1,2 | 2,3 |
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| Research and Development | 13 | Identify and continually update resources available to assist clients seeking genetic and genomic information or services including the types of services available. | 2,2,2 | 2,2 | 2,1,2 | 2,2 |
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| 14 | Demonstrate the ability to use a research protocol and the workflow. | 1,1,1 | 0,0 | 3,3,3 | 2,1 |
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| 15 | Demonstrate ability to effectively use information technology to obtain credible, current information about genetics and genomics. | 2,3,2 | 1,1 | 3,2,3 | 2,2 |
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| 16 | Ability to implement quality assurance procedures within a research protocol. | 2,3,2 | 0,0 | 3,3,3 | 2,1 |
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| 17a | Understand how to identify disease-associated genetic variations. | 1,3,1 | 0,0 | 2,2,3 | 0,2 |
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| 17b | Understand how disease-associated genetic variations facilitate the development of prevention, diagnosis and treatment options. | 3,3,3 | 2,1 | 3,3,3 | 2,2 |
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| 19 | Ability to develop and implement a community engagement plan for a genetics/genomics research study. | 1,3,2 | 0,2 | 3,3,3 | 1,1 |
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Key: No competency – 0; Awareness – 1: Bloom (Knowlegde and Comprehension); Working knowledge – 2: Bloom (Application and Analysis); Specialist knowledge – 3;Bloom (Synthesis and Evaluation). There are multiple competence levels shown as between 2 and 3 different groups mapped the competencies. The last column in bold was the final competence level selected.
Summary of modules included in the training.
| Module | Description of module | Lessons |
|---|---|---|
| Introductory Module | This module introduces the learners to Genomic Medicine. Provides an overview of key areas in African genomics, human genetics and genetic variation. The history of Genomic Medicine, its relevance to Africa and implications to the nursing profession | Lesson 1 – Overview of Course Lesson 2: Patterns of Genetic Inheritance Lesson 3: Genes, Genome Structure and Function Lesson 4: Molecular Diagnostics and Bioinformatics Techniques |
| Ethical, Legal and Social Issues | This module introduces participants to ethical, legal and social issues in genomic medicine and research. Principles of community engagement were introduced. More importantly, the learners were taught basic genetic counselling | Lesson 5 – Ethical, Legal and Social Issues in Applied Genomics Lesson 6 – Community Engagement Lesson 7 – Basic Genetic Counselling Skills |
| Clinical Application of Genetics and Genomics | This module introduces participants to practical examples and case studies in the Genomic Medicine field. The trainers are African based and focus on African-centric examples. In this module participants use their newly acquired basic genetic counselling skills in class and in the clinic. | Lesson 8 – Monogenic Disorders Lesson 9 – Molecular Pathology of Cancer and Application in Cancer Diagnosis, Screening and Treatment Lesson 10 – Application of Genomics to Non-communicable Diseases Lesson 11 – Panel Discussions (Nutrigenomics & Microbiomes) Lecture 12 – Pharmacogenetics & Pharmacogenomics for Nurses in Africa |
| Research and Genetic Epidemiology | This module introduces participants to research concepts and gives them an opportunity to work on a collaborative research study – if good enough, the study is published | Lesson 13 – Clinical Research and Genetic Epidemiology Lesson 14 – Introduction to Class Mini-Projects |
Figure 2Flier circulated widely across various mailing list to attract the first cohort of trainees.
Figure 3A summary of how the training is conducted using the distributed virtual classroom and blended learning approach. At least 7 days before the face to face sessions, participants can download videos from Vula and watch before class and do preclass exercises. During class (face to face sessions), participants engage with learning material (videos, lectures, etc) during face to face classrooms predownloaded by a facilitator. The class can then connect with the trainer virtually for a question and answer session. Participants also submit a quiz and rate the class. After class participants submit an assignment.
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| Facilitator | Omar | Abidi | PhD Human genetics | Human genetics & molecular biology Education and Research; Coordinator of Master in Pedagogy of Nursing Sciences and Health Techniques |
| Institut Supérieur des professions Infirmières et Techniques de Santé (ISPITS) de Casablanca, Morocco |
| Facilitator | MB | Akanle | B.ENG, MICT | BigData, Machine learning, Cloud Computing, Bioinformatics and Data communication |
| Covenant University Bioinformatics Research (CUBRe), Nigeria |
| WG Member, Planner, Advisor | Stuart Alvaro | Ali | PhD, FIBMS, FRSPH | Genetic testing, epidemiology, |
| Precision Medicine for Africa - A Division of the Wits Health Consortium, University of the Witwatersrand Johannesburg, Republic of South Africa |
| Facilitator | Cliff Asher | Aliga | MSc Emerg. & Crit Nurse, BSN, PhD Candidate | Emergency and Critical Care Nurse Specialist |
| Aga Khan UNiversity, Uganda |
| Coordinator | Paballo | Chauke | Msc Biodiversity, Conservation and Managenent BSocSc(Hons)Environemental and Geographical Science | Bioinformatics Training and Outreach Coordinator |
| H3ABioNet, University of Cape Town |
| Planning Team | Minnet | Cotzee | Professor in Nursing |
| Child Nurse Practice Development Initiative, Department of Paediatrics and Child Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa. | |
| Trainer, WG member | Collet | Dandara | BSc, BSc(Hons), PhD | Pharmacogenomics, Drug metabolism, Human Genetics, Genomics, epigenetics and tissue culture |
| Pharmacogenomics & Drug Metabolism Research Group, Division of Human Genetics, Department of Pathology & Institute of Infectious Disease and Molecular Medicine, University of Cape Town |
| Planning Team, Facilitator, Trainer | Faisal M. | Fadlelmola | PhD (Human Molecular Genetics & Bioinformatics) | Molecular Biology, Genetics, Genomics, Bioinformatics and Information Technology |
| Centre for Bioinformatics & Systems Biology, Faculty of Science, University of Khartoum, P.o. Box 321 Khartoum, Sudan |
| Facilitator | Michael B. | Fawale | MBBS, MSc Pharmacology, FMCP (neurology) | Clinical Neurology, Stroke genetics, Epilepsy Epidemiology of sleep disorders |
| Obafemi Awolowo University, Ile-Ife, Nigeria |
| Planning Team, Advisor | Pedro L. | Fernandes | BioinformaticsTraining |
| Instituto Gulbenkian de Ciência, Oeiras, Portugal | |
| Trainer, WG Member | Anita | Ghansah | PhD Genetic Epidemiology | Molecular Biology, Genetics Molecular/genomic epidemiology |
| Noguchi Memorial Institute for Medical Research, University of Ghana, Legon-Ghana |
| Facilitator | Karen | Kengne Kamga | MD | Physician, genetic counselling |
| Department of pathology, division of human genetics, University of Capetown |
| Facilitator | Zainab Abimbola | Kashim | B.Sc., M.Sc. (Microbiology) | Microbiology, Bioinformatics |
| National Biotechnology Development Agency, Abuja, Nigeria |
| Planning Team,Trainer, Lecturer | Samar Kamal | Kassim | MD, | Medical Biochemistry, Molecular Biology, Genomics, Bioinformatics Education, Clinical Nutrition |
| Faculty of Medicine, Ain Shams University, Cairo, Egypt |
| Facilitator | Morenikeji A. | Komolafe | MBBS, Dip. Clin Neurology, FWACP | Genetics, Epilepsy, Parkinson’s Disease, Sleep Disorders. |
| Obafemi Awolowo University, Ile-Ife, Nigeria |
| Trainer | Guida | Landouré | MD, PhD | Human genetics, Neurogenetics |
| Université des Sciences, des Techniques et des Technologies de Bamako, Mali |
| Planning Team | Cordelia | Leisegang | B.Nurs., M.Nurs. (Nursing) | Clinical trials, online learning/training and leadership |
| Global Research Nurses |
| Planning team, WG member,Advisor | Ebony B | Madden | B.S. Biology, M.S. Genetic Counseling, Ph.D. Genetics and Human Genetics | Genetic epidemiology, genomic medicine, population genetics, health disparities |
| Division of Genomic Medicine, National Human Genome Research Institute, National Institutes of Health |
| Planning Team | Kuda | Majada | General Nurse |
| The School of Nursing, University of Western Cape, | |
| Coordinator | Malebo | Malope | BSc. Medical Sciences, MSc (Med) Genetic Counselling | Genetic Counsellor, Serious Congenital Abnormalities and Termination of Pregnancy |
| Department of Pathology, Division of Human Genetics, University of Cape Town, South Africa |
| Trainer/ WG | Mamadou | Kaba | MD, PhD | Microbiomics; |
| Division of Medical Microbiology, Department of Pathology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa. |
| Facilitator | Keofentse | Mathuba | Registered Nurse/Midwife |
| Botswana-Baylor Children's Clinical Center of Excellence, Gaborone, Botswana | |
| Trainer, Planning Team | Alice | Matimba | Pharmacogenomics, Training |
| Advanced Courses and Scientific Conferences, Wellcome Genome Campus, Hunxton, UK | |
| Facilitator | George | Mochamah | MSc. Clinical trials | Clinical trials |
| KEMRI-wellcome Trust, Kilifi |
| Advisor | Sarah L | Morgan | BSc(Hons), MSc, MA, PhD (Tumour Diagnostics) | Programme and curriculum development (both training and higher education), trainer development, competency assessment, Molecular Biology, Ethics |
| Training team, EMBL-European Bioinformatics Institute, Hinxton, UK |
| Planning Team, Trainer | Nicola | Mulder | PhD Medical Microbiology | Bioinformatics education and curriculum development, Bioinformatics, Genomics |
| Computational Biology Division, Department of Integrative Biomedical Sciences, IDM, University of Cape Town, Cape Town, South Africa |
| Planning Team, WG Member | Nash | Oyekanmi | Genomics, |
| Centre for Genomics Research and Innovation, National Biotechnology Development Agency, Abuja, Nigeria | |
| Trainer, WG member | Nchangwi S | Munung | M.Sc Med M.Sc Biochemistry | Bioethics |
| Division of Human Genetics and Institute of Infectious Diseases and Molecular Medicine, |
| Coordinator, Trainer | Victoria | Nembaware | Bioinformatics, Genomics, Training, Capacity Building |
| Division of Human Genetics and Institute of Infectious Diseases and Molecular Medicine, | |
| Facilitator | Temitope Esther | Owoeye | Molecular Biology, Genetics and Genomics |
| National Biotechnology Development Agency, South-West Centre, Ibadan, Nigeria | |
| Planning Team, Working Group, Trainer | Michael Sean | Pepper | MBChB, PhD, MD, PD | Genomics, cell and gene therapy |
| Institute for Cellular and Molecular Medicine, Faculty of Health Sciences, University of Pretoria |
| Advisor | Lunelle | Pienaar | Staff development and curriculum development |
| Department of Health Sciences Education UCT | |
| Trainer | Elize | Pietersen | PhD (Med) | Clinical health research |
| University of Cape Town / Private |
| Planning Team, WG member, Facilitator | Fouzia | Radouani | PhD (Immunology | PhD Immunology; Research in Infectious diseases & public health problems; Molecular biology; Genomics and genetics; Bioinformatics (tools & database development, data analysis) |
| Chlamydiae and Mycoplasmas Laboratory, Institut Pasteur du Maroc, Morocco |
| Planning Team, Working Group Member | Raj | S Ramesar | Human Genetics |
| MRC Genomic and Precision Medicine Research Unit, Division of Human Genetics, University of Cape Town | |
| Planning Team, WG Member | Michelle | Skelton | Human Genetics |
| H3Africa Administrative Coordinating Centre University Of Cape Town, South Africa | |
| WG member, Facilitator | Sununguko Wata | Mpoloka | Molecular Biology, |
| Department of Biological Sciences, University of Botswana (and CAfGEN) | |
| WG Member | Wayengerera | Misaki | MD, PhD | Human Genetics & Genomics |
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| WG Member | Ambroise | Wonkam | MD, PhD | Genetic medicine |
| Division of Human Genetics and Institute of Infectious Diseases and Molecular Medicine, |
| Facilitator, Trainer | Adetunji | Adesina | MSc (Biochemistry and Molecular Biology) | Molecular Biology and Bioinformatics |
| Department of Biochemistry and Molecular Biology, Obafemi Awolowo University, Ile-Ife, Nigeria. |
| Trainer | Tina-Marié | Wessels | MSc(Med) Genetic Counselling (PhD) | Genetic Counsellor |
| Division Human Genetic Genetics, Department of Pathology, University of Cape Town |