SickKids-Caribbean Initiative (SCI) Annual Progress Report 2016-2017

SCI

SickKids-Caribbean Initiative Enhancing Capacity for Care in Paediatric Cancer and Blood Disorders

Annual Progress Report 2016-2017

Table of Contents Introduction to SCI ....................................................3 SCI Objectives and Impact ........................................4 SCI Partner Countries ...............................................6 Measurement and Evaluation ...................................

7 SCI Focus Areas ...................................................... 8

Clinical Care ............................................... 9

Diagnostic Services .................................... 10

Local Oncology Databases ........................ 11

Nursing .........................................................12

Sickle Cell Disease ................................... 14

Research, Scholarly Activities & Advocacy ... 15 Past and Present SCI Fellows ..................................

17 Thank You .................................................................

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SickKids-Caribbean Initiative (SCI)

Introduction to SCI Global efforts to improve child health have largely been directed towards improving birth outcomes and reducing levels of infectious disease in children. While these efforts have laid the foundation for considerable progress, noncommunicable diseases such as cancer and blood disorders are now emerging as significant causes of childhood illness and death. In high-resource settings, advancements in the diagnosis, treatment and management of these diseases have drastically improved health outcomes for paediatric patients; however, countries with financial or other resource constraints have not made parallel gains.

In the Caribbean, children with cancer or blood disorders are at a particular disadvantage because of limited access to health-care professionals with specialized training; limited access to specialized diagnostic services; sparse data on treatment efficacy and disease epidemiology; and a shortage of front-line health care providers. Poor clinical outcomes are exacerbated by the fact that some of these countries face unique geopolitical challenges, as well as limited or intermittent access to some essential medicines.

The Centre for Global Child Health at The Hospital for Sick Children (SickKids) is a dedicated hub for global child health-focused activities, connecting researchers and health-care professionals around the world. Launched in 2013, the SickKidsCaribbean Initiative (SCI) focuses on building sustainable, local capacity to diagnose, treat and manage paediatric cancers and blood disorders in the region. As an early step in creating SCI,

partnerships were formalized with key stakeholders – the University of the West Indies (UWI), Ministries of Health, hospitals and institutions – in six Caribbean countries: The Bahamas, Barbados, Jamaica, St. Lucia, St. Vincent and the Grenadines and Trinidad and Tobago.

Upon assessment of local needs and resources, six collaborative working groups were established to focus on clinical care, diagnostic services, local oncology databases, nursing education, sickle cell disease, and research, scholarly activities and advocacy. Together, these working groups and their respective activities constitute a programmatic approach to the enhancement of infrastructure, training, strategy and advocacy.

Over the past year, SCI continued to build on its past success, achieving many significant milestones. We are confident that by continuing to work together we can achieve our collective goal: to enhance capacity for care and improve the outcomes and quality of life for children living with cancer and blood disorders in the Caribbean.

SCI is supported by SickKids Foundation and is an example of SickKids’ vision: Healthier Children. A Better World.TM

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SCI Impact To-Date SCI Objectives • Improve the diagnosis and subsequent management of paediatric patients with cancer and blood disorders • Provide training and education in the areas of haematology/oncology, nursing, and laboratory services based on expressed needs of Caribbean partners • Establish best practices and improve health outcomes through the development and maintenance of local hospital-based paediatric oncology databases and treatment protocols adapted for local use • Establish an integrated and sustainable communication structure for bidirectional education among local partners, creating and enhancing a regional community of practice

37,578 NEWBORN SICKLE CELL DISEASE SCREENING TESTS CONDUCTED AT CAIHR JAMAICA FOR CHILDREN IN JAMAICA AND ST. LUCIA

Sickle Cell Disease

SCI Impact •

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Improved access to services for children in the Caribbean with cancer and blood disorders Increased capacity for Caribbean partners to provide timely, accurate diagnosis and high-quality follow-up care Strengthened infrastructure that enhances capacity to care for children with cancer and blood disorders Indirect benefits for other users of health systems in the region Robust knowledge exchange and new regional and global linkages established, fostering a sustainable community of practice in the region

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SickKids-Caribbean Initiative (SCI)

BUILDING A REGIONAL COMMUNITY OF PRACTICE:

26 NURSES

FROM SCI PARTNER COUNTRIES SPONSORED TO COMPLETE THE PAEDIATRIC HAEMATOLOGY/ ONCOLOGY NURSING DIPLOMA PROGRAM AT THE UNIVERSITY OF THE WEST INDIES SCHOOL OF NURSING IN TRINIDAD

Nursing

18 INVITED LECTURES ON THE WORK OF SCI Research, Scholarly Activities & Advocacy

221 CASE CONSULTATIONS 4 LOCALLY ADAPTED CLINICAL CARE GUIDANCE DOCUMENTS 5 LOCALLY ADAPTED SUPPORTIVE CARE GUIDANCE DOCUMENTS

Clinical Care

7 TELEMEDICINE FACILITIES INSTALLED 3 HAEMATOLOGY/ONCOLOGY FELLOWS TRAINED

SickKids, working in partnership with the University of the West Indies, Ministries of Health, and key hospitals in The Bahamas, Barbados, Jamaica, St. Lucia, St. Vincent & the Grenadines, and Trinidad & Tobago

Diagnostic Services

188 SPECIALIZED DIAGNOSTIC TESTS FOR PATIENTS DIAGNOSED WITH LEUKEMIA OR HAEMOPHILIA

457 PATIENTS REGISTERED IN LOCAL ONCOLOGY DATABASES Local Oncology Databases

CUSTOM BUILT LOCAL DATABASES ESTABLISHED IN SCI PARTNER HOSPITALS TO RECORD AND TRACK PATIENTS 7 LOCAL DATA MANAGERS HIRED AND TRAINED ACROSS SCI PARTNER COUNTRIES SCI Annual Progress Report 2016-2017

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SCI Partner Countries The Bahamas

“SCI has opened doors for us in the Caribbean. More than ever before, Caribbean leaders in the field are talking to each other and supporting one another, even in resource poor situations. This is a fantastic group of people who have a single goal in mind, which is to help the children of the Caribbean. They are passionate about their work, they are dedicated, and they are committed. I couldn’t have asked for a better group of people to work with.” - Dr. Corinne Sin Quee-Brown

Barbados

“SCI has brought us closer together as we have been able to connect with our Caribbean colleagues and improve treatment for our kids with cancer and blood disorders through telemedicine and training of nursing staff, laboratory staff, and physicians. Treating a child with cancer and saving a child with cancer’s life is really saving a lifetime for these children to be able to grow up and lead productive lives.” - Dr. Cheryl Alexis

Jamaica

“SCI has improved our knowledge and expertise. It has also built our capacity in terms of our telehealth and our laboratory diagnostic ability, which we definitely needed improvement in.

We hope to continue to see this improve to the level that we can be assured that we will have quick assessment, as well as rapid interventions to improve the outcomes for children in the Caribbean.” - Dr. Michelle-Ann Richards-Dawson “We’re recognizing what we need to do to improve the care of our patients. Broadening the coverage of care for these patients has been an important impact. We’re now more certain that all of our patients who have the diagnosis of leukemia get tested and all of these patients can now access this testing. So that has been a major impact in the care of these patients.”

- Dr. Gilian Wharfe

St. Lucia

“Sickle cell disease is our leading chronic inherited disease in St. Lucia. We recognize the importance of newborn screening and identifying children early on so we can enroll them in our comprehensive care program, and mitigate the chronic complications, and morbidity and mortality associated with late diagnosis. Through SCI, we have an enhanced awareness and earlier diagnosis of cancers and blood disorders in children in our community.” - Dr. Jackie Bird

St. Vincent and the Granadines

“SCI has caused a lot of integration in the services that are available. Now we can collaborate with doctors in the other islands. It’s much easier for me to call up Trinidad, or Barbados, because I’m more familiar with the doctors and specialists and I can access the help that I may require. It has helped us understand each other better; the challenges that we on the smaller islands face, and how countries with more resources can assist us.” - Dr. Rosemary Boyle

Trinidad and Tobago

“As we forge into the final year of this ambitious initiative, it continues to exceed my expectations.

It has been the perfect balance of helping our developing region provide the best care for our children with cancer and blood disorders, while building capacity within the region to ensure that this new standard of care is sustainable.” - Dr. Curt Bodkyn

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SickKids-Caribbean Initiative (SCI)

Measurement & Evaluation While their particular activities vary, the working groups share a common mission: To leverage clinical expertise and inter-professional collaboration to enhance local knowledge and medical infrastructure in the six SCI partner countries. This strengthens and sustains local capability to effectively detect, treat and manage childhood cancer and blood disorders in the Caribbean.

The midterm evaluation included two primary data collection methods: In-person focus groups and telephone/Skype interviews. The results, besides being a hallmark of accountability, will inform continuous quality improvement during the final year of SCI’s current phase and will help with planning for a second phase of SCI’s work.

In order to best understand what is working and how to build on those successes, SCI embedded a framework for monitoring, evaluating and for knowledge translation within its project plans. Key performance indicators have been collaboratively identified by SCI stakeholders as pointing toward program success in achieving the following outcomes: • Increased utilization of specialized knowledge and skills in patient management • Increased use of data to improve clinical care and decision-making • Increased availability and access to diagnostic services • Increased knowledge translation and dissemination of evidence-based practice

Evaluation Results The following are a few key excerpts from the SickKidsCaribbean Initiative Midterm Evaluation. The full report can be accessed at www.sickkids.ca/sci.

Measuring the key performance indicators related to each of these outcomes has allowed us to monitor across activities and across time.

Quantitative data related to program activities is collected each quarter, and displayed on a project dashboard. This information has also been made more widely available in two previous Annual Progress Reports (2014-2015 and 2015-2016).

To supplement this information, in 2016, SCI commissioned a midterm evaluation by an external consultant. Cathexis Consulting Inc. collected qualitative data to help us understand SCI’s quantitative information in greater depth, identify challenges and opportunities, and support continuous quality improvement.

Stakeholders spoke in highly positive terms about SCI, praising both the process (strong partnerships and close collaboration) and the impacts (increased capacity and improved patient outcomes) of the initiative. The feedback from partners indicate that capacity in each of the six focus areas and in all six countries has indeed increased and is expected to continue increasing for at least the duration of the project and likely beyond.

Respondents identified SCI as well functioning, highly valued, and effective in making strong progress towards its intended goals.

Other than various incremental improvements suggested in individual sections of the report, the largest opportunity for improvement is to strengthen sustainability.

Strengthening sustainability will be a key objective of both the final year of SCI Phase 1 and of SCI Phase 2 planning.

SCI Annual Progress Report 2016-2017

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SCI Focus Areas Clinical Care

Research, Scholarly Activities & Advocacy

Sickle Cell Disease

Diagnostic Services “In Toronto, we can cure approximately 80% of children with cancer and effectively treat and manage children with serious blood disorders like sickle cell disease. That is not true of the countries that are part of this initiative. But we believe that those gaps will be closed. They can be closed by implementing better diagnostic tools, offering case consultation on complex cases using telemedicine, and very importantly, training personnel - the future people who will work in this area.”

– Dr. Victor Blanchette, McCaig Magee Family Medical Director, SCI Co-Chair, Canada

Nursing

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SickKids-Caribbean Initiative (SCI)

Local Oncology Databases

Clinical Care The SCI Clinical Care Working Group was established to ensure best practices across the region. SCI partners utilize SCI-supported telemedicine facilities and technology to interact with each other and with SickKids consultants to reach the collective goal of improving the diagnosis and treatment of children with cancer and blood disorders. Regularly scheduled telemedicine sessions and ad hoc case consultations are opportunities for clinical collaboration, knowledge exchange and real-time discourse on locally-appropriate treatment options.

Working towards SCI’s objective to improve the assessment, diagnosis and treatment of paediatric cancer and blood disorders, specialist physicians at SickKids and in the Caribbean work together to: (1) discuss treatment approaches in specific disease areas; (2) gain insight into current practices to best understand what is working, resource constraints and opportunities for improvements; and (3) engage in interactive educational sessions. A component of this work has been the development of a suite of supportive care guidance documents now in place in all SCI partner countries and clinical care guidance documents, currently being developed. These documents, locally owned, customized, and updated, are critical tools in caring for children.

Cases have been submitted for consultation from all SCI countries as indicated in the table below:

33 cases in The Bahamas 29 cases in Barbados 59 cases at Bustamante Hospital for Children; 32 cases at UHWI in Jamaica 10 cases in St. Lucia 13 cases in St. Vincent and the Grenadines 45 cases in Trinidad and Tobago

Total: 221 cases

Types of cases on which consultation was sought: Leukemia/ Lymphoma Solid Tumour

83 cases

75 cases

Neurooncology 30 cases

Noncancerous blood diseases 32 cases

Other 1 case

2016/17 Progress • Physician from Barbados began a supported 2-year haematology/oncology fellowship at SickKids • Telemedicine equipment procured for the new telemedicine room at University Hospital of the West Indies (UHWI). Equipment will be installed and in use in 2017-2018 • As of March 31, 2017, a total of 221 case consultations have been conducted since SCI began its work

Looking Ahead

• Continue capacity building through education via monthly telemedicine Case Consultation Review Rounds and ad hoc case consultations • Continue to implement clinical care guidance documents to improve the clinical management and treatment of paediatric cancers across all SCI sites • Support ongoing professional development • Formalize participation in the Children’s International Consortium for Acute Leukemia Initiative (C-ICAL), an international network established by The American Society of Hematology (ASH) that seeks to improve the care of children with acute lymphoblastic leukemia (ALL) – the most common cancer affecting children. Working with SCI, ASH has identified select SCI countries with which to partner on implementing a clinical protocol for treating children with ALL, and building capacity for a clinical ALL network in the region • Continue subspecialty training for paediatric haematology/oncology

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Diagnostic Services Early and accurate diagnosis is a foundation of patient management. However, access and availability of diagnostic services can be challenging in resourceconstrained settings. Leukemia and lymphoma, together, comprise 40% of all paediatric cancers.

The evidence shows that increasing access to immunophenotyping (in which bone marrow or a fluid sample is tested by flow cytometry, cells are marked with antibodies and analyzed for leukemia/lymphoma markers) has the highest impact on outcomes for children with leukemia/lymphoma, compared to other diagnostic services. With this in mind, SCI has made immunophenotyping available for all SCI partner countries and is working to enhance laboratory testing and capacity in the Caribbean. By implementing this strategy, SCI is also able to enhance the collection of comprehensive and accurate registry data for patients with leukemia and lymphoma.

2016/17 Progress • Samples from SCI partner countries were received at SickKids and UHWI, following SCI Diagnostics Services Standard Operating Procedure, with reports returned to referring hospitals to help guide the treatment of patients.

As of March 31, 2017, 138 such tests have been completed through SCI • Planning, equipment purchase, and training continued for immunophenotyping capacity at National Public Health Lab (NPHL) in Jamaica • Equipment support for FISH Test Service at University of the West Indies Cytogenetics Laboratory

Looking Ahead •

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Continued support to build capacity for immunophenotyping services at NPHL in Jamaica to establish Jamaica’s second testing site Continue to work on advocacy aimed at ensuring ongoing access to immunophenotyping services for all SCI partner countries

“Without the immunophenotyping test, you’re shooting in the dark” – Lead Physician respondent, from SCI Midterm Evaluation Report

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SickKids-Caribbean Initiative (SCI)

Local Oncology Databases It is critical to consistently and reliably monitor incidence, treatment and outcomes of paediatric oncology patients. Therefore, SCI worked with partner hospitals to establish systems to capture this important data. The collection and validation of data on the demographics, disease characteristics and treatment outcomes of children in SCI partner countries can help in evaluating changes in therapy or supportive care and inform the design of future interventions, helping to improve the clinical management of children diagnosed with cancer in the region.

2016/17 Progress • 132 new patient records were entered in 2016/17.

457 patients have been registered to-date.

• Data Managers continued to meet regularly to share learnings • Annual data analysis processes to review and analyze patient data trends, such as disease prevalence, survival rate, and treatment outcomes were established • Indicators and targets have been established • Regular special rounds to discuss strategies for reducing incidence of treatment related mortality identified through the oncology databases were established

Looking Ahead • Continue prospective data collection and maintenance of databases • Continue annual data analysis, reviewing and analyzing patient data trends such as disease prevalence, survival rate, and treatment outcomes • Monitor indicators and targets to better understand changes in outcomes in relation to project activities • Develop scholarly publication(s) based on retrospective data captured through SCI local oncology databases

“Databases are the backbone of the whole SCI” – Nurse and Data Manager respondent, from SCI Midterm Evaluation Report

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Nursing Nurses have a critical role as an integral part of interprofessional teams caring for children with cancer and blood disorders. Nurses are at the forefront of delivering evidence-based patient care and leading implementation of evidence-based practices. By investing in nurses through specialty education, SCI strives to advance paediatric nursing practice to provide the highest quality care for children with cancer and blood disorders in the six Caribbean countries within the project. The Paediatric Haematology/Oncology Nursing Program, collaboratively developed and delivered by SickKids Education Specialists and clinical experts and lecturers at the University of the West Indies School of Nursing (UWISoN), St. Augustine Campus in Trinidad and Tobago, aims to build nursing capacity in the Caribbean by developing nurses as leaders who can advocate for patients and their families, conduct quality improvement initiatives, develop practice guidelines, and mentor nursing colleagues in clinical settings to deliver safe and effective care.

Nursing Program Concepts: Blended learning/flipped classroom delivery •

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35% e-learning allowing students to stay in home countries longer 25% in-class using interactive activities and case-based learning 40% clinical practicum

Topics: • Advanced paediatric nursing including child and family-centered care • Specialist haematology/oncology nursing practice (supportive care, common paediatric cancers, pain management, safe chemotherapy handling, oncology emergencies) • Nursing leadership – focused on change leadership and quality improvement

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SickKids-Caribbean Initiative (SCI)

2016/17 Progress Specialty Nursing Program: • A 9-month competency Paediatric Haematology/ Oncology Nursing Program launched in September 2016 at UWISoN, St. Augustine Campus, Trinidad and Tobago • 26 nursing students were sponsored to complete the Paediatric Haematology/Oncology Nursing Program and will receive a Diploma in Paediatric Haematology/Oncology Nursing from UWISoN: The first cohort of 13 SCI sponsored nursing students successfully completed the program in June 2017. The second cohort of 13 SCI sponsored nursing students started in May 2017 Patient Education: • A gap in Patient Education Materials was identified early in the project as an area of need across the various countries. To address this gap as a best practices guide, Creating Patient Education Materials was developed within with SCI Nursing Working Group for use by SCI partners responsible for managing the development of patient education materials to support paediatric haematology/ oncology patients and their families Nursing Working Group: • Continued engagement of nursing working group members achieved through regular teleconference and in-person meetings, with representation across all seven sites at the hospital, academic and government level Patient Care Education Rounds: • Led by the SCI Nursing Working Group, regular Patient Care Education Rounds are held via telemedicine on topics relevant to holistic, patient and family-centered care for patients with paediatric cancers and blood disorders and are open to all professionals. The following three sessions took place in 2016/17: Caring for the Care Provider Leading Change: Implementing Quality Improvement Supporting Learnings: Practical Advice for Clinical Instructing

Looking Ahead • Provide ongoing Patient Care Education Rounds based on needs identified by SCI partners and nursing students • Second cohort of students to graduate from the Paediatric Haematology/Oncology Nursing Program • Evaluation of nursing program in SCI partner countries • Leverage Phase 1 graduates from the SCI nursing program to work with in-service education departments to deliver targeted inter-professional continuing education to build knowledge around the best treatment of haemoglobinopathies including sickle cell disease and severe inherited bleeding disorders, e.g. haemophilia, von Willebrand disease

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Sickle Cell Disease Sickle cell disease (SCD) is a hereditary blood disorder resulting in a high-risk of severe illness and early death.

It is the most common genetic disorder in much of the Caribbean. Evidence-based best practice for SCD screening and care are fairly straightforward: 1. Newborn screening using blood samples obtained via heel prick and rapid diagnostics 2. For those babies identified with SCD, implementation of simple, low-cost steps that are proven to decrease the risk of disability and death.

Piloting Heel Prick Screening in St. Lucia: Universal Newborn Screening has been achieved in St. Lucia; however the method for taking blood samples from babies and the technology being used to test blood for SCD has been known to result in errors and inefficiencies. Working closely with SickKids and the laboratory at the Sickle Cell Unit, Caribbean Institute for Health Research (CAIHR) in Kingston, Jamaica, St. Lucian physicians and nurses have introduced the heel-prick blood sampling and testing method, running in parallel alongside the existing newborn screening program. This pilot study will allow for a side-by-side comparison of the old and new blood sampling and blood screening methods, showing variances in accuracy and timeliness of diagnosis.

The pilot has been extended into 2017-2018, when we expect to have sufficient data to share in St. Lucia, with other SCI partners, and more broadly, in order prove the importance of universal newborn screening, and specifically the heal prick screening method, for accurate and timely diagnosis.

Advocacy: Despite the prevalence of SCD throughout the Caribbean, there is still a lack of awareness about the importance of early screening, diagnosis, and supports that should be in place for children diagnosed with SCD. SCI is partnering with the Caribbean Network of Researchers on Sickle Cell Disease (CAREST), CAIHR, and other local and international groups to help promote awareness and evidence-based practices to ensure that children with SCD do not face debilitating complications and early death.

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SickKids-Caribbean Initiative (SCI)

2016/17 Progress •

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Drs. Jennifer Knight-Madden and Isaac Odame spoke at a symposium sponsored by the Society for Inherited and Severe Blood Disorders, March 24-26, 2017, in Trinidad and Tobago, emphasizing the benefits of SCD newborn screening and early childhood care SCI endorsed the Sickle Cell Unit Clinical Care Guidelines developed at CAIHR and facilitated access to copies across the various islands SCI met with partners and their Ministries of Health to help promote SCD awareness and evidence- based best practices for screening and care Dr. Isaac Odame participated as a resource person in a heel-prick newborn testing method workshop with health care providers in St. Lucia 16,270 new heel-prick newborn screening tests were conducted for St. Lucia Drs. Jennifer Knight-Madden and Waveney Charles were sponsored to attend the 3rd Global Congress of Sickle Cell Disease in Bhubaneswar, Odisha, India, February 21-24, 2017. Dr. Odame is the Medical Director of the Global Sickle Cell Disease Network (GSCDN). GSCDN partnered with Odisha Haematology and the Indian Council for Medical Research (ICMR) to organize the well-attended conference which attracted clinicians, researchers, allied health professionals, policymakers, and patient advocacy groups from around the world

Looking Ahead •

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Demonstrate proof of concept for using a more advanced method of blood sampling and testing for SCD in newborns Continued support and capacity building for SCD screening and management in the Jamaican public health system Continued partnership with SCI countries, regional and international SCD groups to improve awareness about SCD, promote early diagnosis, and support interventions to minimize incidence of illness and early death

Research, Scholarly Activities and Advocacy An essential part of the SCI collaboration is to continue to learn about what works best and where, share knowledge, and engage in activities focused on investigating, understanding and advocating for the needs of children with cancer and blood disorders within the Caribbean region and around the world.

2016/17 Progress Conference/Journal

Title

Author/Presenter(s)

Date

Society for Inherited and Severe Blood Disorders Conference

Management of Hemophilia: The Caribbean Experience

Blanchette, V.

3/17

SickKids Haematology/ Oncology Divisional Rounds

SickKids-Caribbean Initiative: The Power of Structured International Partnerships in Paediatric Haematology/Oncology

Blanchette, V.

3/17

The Lancet Global Health Blog

Setting the stage for improving childhood cancer outcomes: The SickKids-Caribbean Initiative

Gibson, T. and Gupta, S.

3/17

Pan American Health Organization (PAHO) Working Group Meeting

The SickKids-Caribbean Initiative

Bodkyn, C., Gupta, S. and SinQuee, C.

2/17

American Society of Hematology Conference; C-ICAL Meeting

Overview of Paediatric ALL in Participating SickKids-Caribbean Initiative Countries

Bodkyn, C. and SinQuee, C.

International Society of Paediatric Oncology (SIOP)

Setting the stage for improving Caribbean childhood cancer outcomes by establishing hospital-based paediatric oncology registries through the SickKids-Caribbean Initiative: Lessons learned for other jurisdictions

Palmer-Mitchell, N., Alexis, C., Bird-Compton, J., Bodkyn, C., Boyle, R., McLean-Salmon, S., Reece-Mills, M., SinQuee-Brown, C., Allen, U., 10/16 Wharfe, G., Richards-Dawson, M., Blanchette, C., Gupta, S.

Bahamas Research Day 2016

The Benefits and Impacts of Participation in the SickKidsCaribbean Initiative for The Bahamas

SinQuee, C.

9/16

61st Annual CARPHA Health Research Conference

SCI update and discussion about development of regional paediatric cancer and blood disorders strategy

Allen, U., Thame, M.

9/16

The World Federation Hemophillia (WFH) Congress

Establishing a registry and improving diagnostic capabilities and treatment outcomes for persons with haemophilia in Jamaica

The American Journal of Public Health (AJPH)

CAREST--Multilingual Regional Integration for Health Promotion and Research on Sickle Cell Disease and Thalassemia

CAREST 2016 Conference

Global Uptake and Challenges of Newborn Screening for Sickle Cell Disease

12/16

Wharfe, G., Buchner-Daley, L., Gibson, T., Hillard, P., Abad, A., Adler, E., Bick, C., BomaFisher, L., Bouskill, V., Floros, G., Lillicrap, D., 7/16 Lowe, Y., Lowe, D., Palmer-Mitchell, N., Rand, M., Teitel, J., Tuttle, A., Usuba, K., Watson, A., Young, N., Blanchette, V. Knight-Madden, J., Romana, M., Villaescusa, R., Reid, M., Etienne-Julan, M., Boutin, L., Elana, G., Elenga, N., Wheeler, G., Lee, K., Nieves, R., Jones Lecointe, A., Lalanne-Mistrih, 5/16 M., Loko, G., Keclard-Christophe, L., HardyDessources, M. Odame, I.

SCI Annual Progress Report 2016-2017

4/16

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Research, Scholarly Activities and Advocacy 2016/17 Progress Continued

Looking Ahead

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• Continue to target opportunities to share lessons we learn broadly within the Caribbean community and beyond • Continue to develop partnerships with regional governments and inter-government organizations, as well as additional stakeholders in the region to begin to plan for the development of a regional cancer and blood disorders strategy • Support capacity-building of local NGOs around advocacy and fund-raising expertise in order to ensure long-term sustainability of progress made through SCI’s work

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Caribbean lead physicians Drs. Corrine Sin Quee-Brown and Curt Bodkyn completed the Global Scholars Advocacy Course ‘How to plan and execute a successful advocacy campaign’, a Master Course, which culminated in the Global Scholars Advocacy Workshop prior to the 2016 World Cancer Congress in Paris, France SCI formally joined the Healthy Caribbean Coalition, a civil society alliance

SickKids-Caribbean Initiative (SCI)

Past and Present SCI Fellows Trained at SickKids Dr. Michelle Reece-Mills

2011-2012 Paediatric Haematology/Oncology Fellow “I was the first Fellow who was trained through SCI, which completed my training in paediatric haematology/oncology. Working with children with cancer takes a lot of commitment on the part of any treating physician, and especially one in the islands. I’ll be honest, it’s a lot of work. Through the initiative and my fellowship, I feel like I have a clearer path in terms of how to treat, when to refer, and when to ask for help.

The guidance is definitely always provided. I feel encouraged that with this initiative we will see an improvement in the survival of the children overall, which is what we’re all aiming for.”

Dr. Sharon McLean-Salmon

2013-2015 Paediatric Haematology/Oncology Fellow “The fellowship was fantastic and a great learning experience. I was honoured to have this opportunity to be mentored by some of the very people, especially experts in the area, who have written some of the protocols that treat patients with cancer and blood disorders worldwide. It wasn’t a cake walk, I mean, it had its challenges, but I feel stronger and more secure in my information and the way I treat my patients today.”

Dr. Chantelle Browne-Farmer

2016-2018 Paediatric Haematology/Oncology Fellow “When I started this training program a year ago, I was looking forward to being exposed to new and emerging treatments for children with haematological disorders and cancers, and SickKids did not disappoint. I have been a part of teams managing children with revolutionary treatments that I would have never been exposed to in the region. Though we might be a long way from the introduction of many of these treatments to the Caribbean, it is something to aspire to and hopefully I can eventually be part of the process. The knowledge I have been acquiring through evidencebased practices in the treatment of childhood cancers and blood disorders has boosted my confidence and continues to build on the experience I will need to maximize our regional resources to care for our children in the best way possible.”

SCI Annual Progress Report 2016-2017

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The Bahamas

Jamaica

Thank you!

We would like to thank SickKids Foundation and their generous donors who have contributed to SCI (in alphabetical order): David and Christine Anderson; The Bahamas Telecommunications Company Ltd. (BTC); CIBC FirstCaribbean; Myron and Berna Garron; Wes and Christine Hall; Holowesko Partners Ltd.; LesLois Shaw Foundation; McCaig Magee Family; Mining4Life Charity Challenge; Wayne & Nigela Purboo and QuickPlay Media; Republic Bank Limited; Sandals Foundation; Scotiabank; and Derrick and Gay Smith.

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SickKids-Caribbean Initiative (SCI)

“This collaboration has already surpassed all of our expectations thanks to the support from our amazing donors and committed partners in the Caribbean and Canada. The way forward, focused on children with cancer and blood disorders and their families living in the Caribbean, is incredibly bright. Thank you from the bottom of my heart!”

– Dr. Victor Blanchette, McCaig Magee Family Medical Director, SCI Co-Chair, Canada

“SCI has been successful in creating a strong community of practice across the six Caribbean partner countries. At the same time, the partners are acutely aware that there are other countries in the region that are in need of enhanced services relating to children with cancer and serious blood disorders. As SCI moves forward to explore opportunities for sustainability, we will continue to actively study how best to engage other countries within the broader Commonwealth Caribbean and the West Indies.”

– Dr. Upton Allen, Bastable-Potts Chair in Infectious Diseases Research, SCI Co-Chair, Canada

St. Lucia St. Vincent & the Grenadines

Barbados

Trinidad & Tobago

SCI Annual Progress Report 2016-2017

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SickKids-Caribbean Initiative (SCI) Annual Progress Report 2016-2017

Contact us: sci.comms@sickkids.ca 416-813-7654 ext 228916 Follow us on Twitter @SickKidsGlobal www.sickkids.ca/sci