SICKLE CELL DISEASE HEALTH MONITOR

TUMAINI SICKLE CELL ORGANIZATION

Sickle cell disease affects nearly 100 million people worldwide and it is responsible for over 50% of deaths among those with the most severe form of the disease. It is estimated that each year over 300,000 children are born with this disease and over 70% of these births occur in Sub-Saharan Africa. In Kenya, it is estimated that 14,000 children are born with sickle cell disease annually and it contributes significantly to both child and adult morbidity and mortality. The sickle cell disease burden follows malaria endemic patterns in Kenya. The high-burden areas include the lake, Western and Coastal regions of Kenya. Due to migration patterns, Sickle Cell is also found in Kenya's urban and commercialized regions. 

Kisumu County, bears a significant burden of Sickle Cell Disease, with approximately 4000 families affected by the condition in the County alone. SCD is a genetically inherited disorder and individuals with sickle cell trait have, a 25% chance of having children with the disease. The prevalence of the sickle cell trait is relatively high in this region, leading to a substantial number of sickle cell cases.

Odame (2022) postulates that Sickle cell disease is one of the world's most prevalent genetic diseases. Major improvements have been made in understanding the disease, paving the way for new and effective treatments. Neonatal screening is developing in many countries, resulting in early prevention of infections and improved parental education. New preventive treatments for vaso-occlusive crises and chronic anaemia are now available. In Kisumu, 32% of children born annually have SCD. This causes a significant burden on caregivers and families leading to both productivity and financial losses. Kisumu County has been undertaking newborn screening for the last two years at Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH), this has been a notable step in the effort towards early intervention and management of the conditions.

Tumaini Sickle Cell Organization also collected standard data through a combination of surveys, interviews, and data analysis from healthcare facilities and community engagement. Information was obtained from patients, caregivers, healthcare providers and community health workers to gain insights into the challenges faced in accessing clinical lab tests for SCD. According to data collected by Tumaini Sickle Cell Organization (TSCO) through extensive community outreach and collaboration with local healthcare facilities, it has been determined that a significant gap exists in the availability and accessibility of diagnostic services for SCD. The data analysis revealed a significant gap between the demand for clinical services for SCD and the available resources to meet that demand. Patients and healthcare providers expressed concerns about the delays in receiving test results and the absence of user-friendly systems for communication and result interpretation. 

REFERENCE.

Odame, I. (2022). 4th Global Congress on Sickle Cell Disease. https://www.sadacc.org/

https://www.health.go.ke/sites/default/files/2023-06/Policy%20guidelines%20on%20infant%20screening%20of%20Sickle%20Cell%20Disease.pdf

Sickle cell disease (SCD) is a chronic condition characterized by abnormal hemoglobin molecules, leading to various health complications, including impaired oxygen delivery and cardiovascular issues. Effective monitoring of vital signs such as oxygen saturation levels, hemoglobin levels and heart rate is crucial for managing SCD and preventing complications. To address this need, a project is underway to develop a wristwatch “SCD Health Monitor” with Bluetooth capabilities specifically tailored for SCD patients, prioritizing accuracy, accessibility and inclusivity. The proposed wristwatch will be placed in each of the seven sub-County hospitals in Kisumu County, Kenya. It will incorporate the following key features to meet the unique needs of SCD patients in Kisumu County.

Accurate Vital Sign Monitoring: The wristwatch utilizes advanced sensor technology to accurately measure oxygen saturation levels, hemoglobin levels and heart rate in real-time. This enables SCD patients to monitor their health status conveniently and proactively.

Bluetooth Connectivity: The wristwatch will be equipped with Bluetooth capabilities, allowing seamless data transmission to the Sickle Cell Diagnostic Access App (SCDA) for effective clinical diagnosis. This enables monitoring by healthcare providers and facilitates timely interventions when necessary.

User-Friendly Interface: The wristwatch will feature a user-friendly interface with intuitive controls and displays, making it easy for operation and comprehension. This promotes patient engagement and empowers individuals to take an active role in managing their health.

Advantages

Improved Monitoring and Management: The wristwatch enables continuous monitoring of vital signs, facilitating early detection of complications and timely interventions. This leads to more effective management of SCD and reduced risk of complications.

Enhanced Patient Engagement: By providing real-time insights into their health status, the wristwatch promotes patient engagement and empowerment. SCD patients are more actively involved in managing their condition, leading to better adherence to treatment plans and improved health outcomes.

Monitoring and Telehealth: The Bluetooth connectivity of the wristwatch enables monitoring by healthcare providers, allowing for teleconsultations and virtual care delivery. This enhances access to healthcare services.

Inclusivity and Equity: The tailored design of the wristwatch ensures accuracy and reliability, addressing disparities in healthcare access and promoting inclusivity in health monitoring technologies.

The primary audience for the "Sickle Cell Disease Health Monitor" project is individuals affected by Sickle Cell Disease (SCD) in Kisumu, Kenya. Specifically, the project aims to target 5000 sickle cell patients, their families and healthcare providers involved in the management of the disease. The project also encompasses medical practitioners, community health care providers and other stakeholders who play a crucial role in supporting SCD patients and in clinical diagnosis. Kisumu County, Kenya bears a significant burden of Sickle Cell Disease, with approximately 4000 families affected by the condition in Kisumu County alone. SCD is a genetically inherited disorder and individuals with sickle cell trait have, a 25% chance of having children with the disease. The prevalence of the sickle cell trait is relatively high in this region, leading to a substantial number of sickle cell cases. The wristwatch will be designed to meet their unique needs and challenges providing them with a convenient and reliable tool for monitoring their health status. They are the primary beneficiaries of this innovative solution which aims to empower them with the tools they need to monitor their health effectively, engage in proactive management and ultimately improve their quality of life.Our project’s goal is to improve the management and quality of life for individuals affected by SCD through accessible and comprehensive health monitoring.

Park et al. (2020) conducted a research on a new mobile health tool that could measure hemoglobin without drawing blood. The research employed a new technique where 153 volunteers who were referred for conventional blood tests at the Moi University Teaching and Referral Hospital were indulged. The study used data from a randomly selected group of 138 patients to train the algorithm, then tested the mobile health app with the remaining 15 volunteers. The results showed that the mobile health test could provide measurements comparable to traditional blood tests over a wide range of blood hemoglobin values. The investigators used software to transform the built-in camera of a smartphone into a hyperspectral imager that reliably measured hemoglobin levels without the need for any hardware modifications or accessories. The results revealed the following:

1.    The ability to perform one of the most common clinical lab tests without a blood draw was achievable and helped reduce the need for in-person clinic visits, making it easier to monitor patients who were in critical condition and improve care in low- and middle-income countries where access to testing laboratories was limited.

Based on the research findings, a particular focus on improving the management and quality of life for individuals affected by SCD through accessible and comprehensive health monitoring for SCD Patients and their families is critical. The “Advancing care by leveraging technology to improve healthcare outcomes for sickle cell disease patients in Kisumu County, Kenya” is convolutedly aligned with the research conclusion, which identifies the critical needs of SCD patients and their families. Through the program, the project seeks to provide a convenient, non-invasive and reliable tool for comprehensive health monitoring. By accurately measuring these vital signs, the SCD Health Monitor enables SCD patients to observe their health status more effectively, allowing for early detection of complications and timely interventions. This aims to empower SCD patients with greater control over their health, facilitate proactive management of the condition and ultimately improve health outcomes and quality of life for individuals living with SCD.

The "SCD Health Monitor" project will incorporate innovation by leveraging cutting-edge technology to address the unique needs of sickle cell disease (SCD) patients. Through the integration of advanced sensors and Bluetooth connectivity, the monitor will provide a comprehensive solution for monitoring key vital signs, including oxygen saturation levels, hemoglobin levels, and heart rate, in real-time. This innovation enables SCD patients to access accurate and timely health data, empowering them to take proactive measures in managing their condition. Additionally, the project will prioritize inclusivity by developing algorithms and calibration methods to ensure accuracy across diverse skin tones, addressing disparities in healthcare access and providing equitable monitoring for all patients. By combining technological innovation with a focus on inclusivity and accessibility, the SCD Health Monitor project aims to revolutionize healthcare delivery for SCD patients, improving their quality of life and health outcomes.

We will be building upon existing work as Tumaini Sickle Cell Organization (TSCO) is a patient support organization that was formed to partner with leading medical agencies, medical professionals, and other key stakeholders to support comprehensive, multi-disciplinary, state-of-art treatment and research on SCD. The organization aims to comprehensively and compassionately care for Children Living with SCD in their Families   well-being of individuals living with the condition. TSCO has worked closely with communities by strategically empowering control and management interventions to enable members of communities to be able to respond to the needs of families affected by the disease in Kisumu county. For us to attain this, we need financial assistance in order to achieve this goal. 

The director and her team are well-suited to design and develop a wristwatch with Bluetooth capabilities for SCD patients in Kisumu County, Kenya, due to their close proximity and understanding of the communities they are serving. The team lead and members have direct ties to the local community, through personal experiences, cultural connections and professional backgrounds. This proximity will allow them to empathize with the challenges faced by SCD patients in Kisumu County and ensure that their perspectives are integrated into the design and implementation process.

Furthermore, the team will actively seek input, ideas and agendas from the community throughout the design and development phases. This will involve conducting focus groups, interviews and community meetings to gather feedback on the specific needs and preferences of SCD patients in Kisumu County. By incorporating community input into the design and implementation of the solution, the team will ensure that the wristwatch meets the unique requirements of the local context and addresses the most pressing challenges faced by SCD patients in the area. Ultimately, the director and her team's commitment to community engagement and collaboration ensures that the solution is meaningful, effective, and truly reflective of the needs and priorities of the communities they serve.

Vision

Children born with Sickle Cell Disease leading healthy lives to adulthood and beyond without developing the devastating effects of the disease. 

Mission Statement

To support sickle cell awareness, education, management, state-of-art treatment, and research, and to bring hope to Sickle Cell warriors and their families by increasing access to opportunities for affected households towards optimal Health, Education, Agriculture and Livelihoods; summarized as HEAL, through synergistic, empowering, innovative, participatory and rights - based initiatives.

Objectives and Outcomes

To develop a SCD Health Monitor with Bluetooth capabilities capable of accurately measuring oxygen saturation levels, hemoglobin levels and heart rate specifically tailored for sickle cell disease (SCD) patients, facilitating comprehensive health monitoring and improving management strategies for the condition. Key Outcome: Facilitate comprehensive health monitoring and improve management strategies for sickle cell disease.

To conduct rigorous testing procedures to verify the functionality and accuracy of the SCD Health Monitor, ensuring that it accurately measures oxygen saturation levels, hemoglobin levels and heart rate, thus confirming its reliability and effectiveness in facilitating comprehensive health monitoring for sickle cell disease (SCD) patients. Key outcome: Instilling confidence in both patients and healthcare providers regarding its capability to provide reliable health data for ongoing monitoring and management of SCD.

To conduct bi-monthly monitoring: Enable continuous and seamless monitoring of vital signs to provide SCD patients with real-time insights into their health status. Implement Bluetooth connectivity to sync data with the SCDA app, allowing for remote monitoring by healthcare providers and timely interventions as needed. Key Outcome: Empowerment of SCD patients with continuous and proactive monitoring of their health while facilitating remote monitoring and timely interventions by healthcare providers, ultimately improving the management and outcomes of SCD.

To integrate SCD Health Monitor with the healthcare ecosystem: Facilitate integration with the Sickle Cell Diagnostic Access (SCDA) app and electronic medical record systems to enable seamless communication and data sharing between the wristwatch and healthcare providers. This will involve compliance with regulatory requirements and standards for medical devices, as well as collaboration with healthcare organizations and technology partners to ensure interoperability and clinical utility. Key Outcome: Creation of a connected and cohesive healthcare environment where patient data captured by the wristwatch seamlessly integrates with existing clinical workflows, enabling healthcare providers to deliver more personalized, proactive, and effective care to SCD patients.

To conduct comprehensive training sessions for healthcare providers to proficiently operate the SCD Health Monitor device, enabling them to effectively monitor vital signs and provide tailored care for sickle cell disease (SCD) patients, ensuring optimal management and improved health outcomes. Key Outcome: Optimal management of SCD and ultimately improve health outcomes for patients.

The total number of staff will be 12 The list below shows the breakdown;

Full time staff - 5

Part time staff - 3

Contractors - 2

Interns - 2

Tumaini Sickle Cell has been working on its solution for the past four years.

Ensuring diversity, minimizing barriers to opportunity, and fostering a welcoming and inclusive environment for all team members is essential for the successful development of the wristwatch. To achieve this, the following strategies will be implemented:

1. Diverse Recruitment and Hiring Practices:

   • Implement inclusive recruitment strategies to attract candidates from diverse backgrounds, including individuals with different ethnicities, genders, ages, abilities and socio-economic statuses.
   • Proactively seek out talent from local communities in Kisumu County, Kenya, through partnerships with local organizations, universities and community groups.
   • Ensure job postings are accessible and inclusive, using language that welcomes candidates from all backgrounds and explicitly stating the organization's commitment to diversity and inclusion.

2. Equitable Opportunities for Professional Development:

   • Provide equal access to training, mentorship, and career advancement opportunities for all team members, regardless of their background or identity.
   • Offer flexible learning options, such as online courses, workshops, and mentorship programs, to accommodate diverse learning styles and schedules.
   • Create pathways for skill development and advancement within the organization, including mentorship programs, leadership development initiatives, and opportunities for cross-functional collaboration.

3. Creating an Inclusive Workplace Culture:

   • Foster a culture of respect, collaboration, and belonging where all team members feel valued and supported.
   • Implement diversity and inclusion training for all staff to raise awareness of unconscious bias, promote cultural competency, and foster respectful communication and collaboration.
   • Establish clear policies and procedures for addressing discrimination, harassment, and microaggressions, ensuring a safe and supportive work environment for all team members.

4. Promoting Work-Life Balance and Well-Being:

   • Offer flexible work arrangements, including remote work options, flexible hours, and paid time off, to accommodate diverse needs and lifestyles.
   • Provide access to resources and support services for mental health, wellness, and work-life balance, including employee assistance programs, wellness initiatives, and peer support networks.
   • Encourage open communication and regular check-ins to ensure that team members feel supported and empowered to prioritize their well-being.

5. Engaging with the Local Community:

   • Actively engage with the local community in Kisumu County, Kenya, to understand their needs, preferences, and priorities regarding healthcare and technology.
   • Partner with local organizations, community leaders, and SCD patient advocacy groups to co-create solutions that are culturally sensitive, relevant, and responsive to the needs of the community.
   • Involve community members in the design, development, and testing phases of the wristwatch project, ensuring that their voices are heard and their perspectives are integrated into the final product.