Minimizing Missed Opportunities for Multiple Myeloma Diagnosis, Treatment and Care in Zimbabwe

Jointed Hands Welfare Organisation 

Multiple myeloma is a serious cancer of the blood affecting millions of people across the world and is the second most prevalent hematological disease accounting for 10% of hematological disease cases while representing 1% of all serious diseases in the world. On average, according to Globocan (2020), 3.2 per 100 000 have MM in Southern Africa, while there are 0.98 and 0.83 per 100 000 people with MM in Eastern Africa and Western Africa respectively. This indicates that Southern Africa is disproportionately affected by multiple myeloma. This is particularly the cases with Zimbabwe in which the number of people with MM is estimated to be 2.69 per 100 000 people along with a 5-year prevalence of 400 new cases every year (Globocan, 2020). A research study by a consortium of organisations including JHWO, focussing on 181 patients across three central hospitals in Zimbabwe suggested that there is deaths of multiple myeloma information among health care workers, professionals such as physicians and orthopaedics as well as general population. Late diagnosis has seen to be a cause for concern among mm patients. Males are the most vulnerable population to be affected by the disease and again ageing is a contributing factor. 

In that regard, the proposed project will address supply and demand gaps in quality Multiple Myeloma diagnostic, treatment, care and support.

1. Delayed diagnosis - aim is to improve the diagnostic experience for patients with Multiple Myeloma (MM) through provision of access to a network of physicians, haematologists & oncologists, with the goal of reducing the time it takes to receive a diagnosis.
2. Inadequate patient education: to provide patients with a comprehensive care plan that addresses their physical, mental, and social support needs, which can help them better understand their diagnosis and treatment options.
3. Symptom management: The project will provide patients with personalized symptom management strategies, which can help them better manage their symptoms and improve their quality of life.
4. Limited caregiver support: proposed project will provide resources and tools to help caregivers manage their loved ones' care, as well as receive emotional support and respite care.
5. Lack of patient engagement: proposed online platform is designed to engage patients and caregivers, providing a sense of community and connection, which will alleviate feelings of isolation and loneliness.
6. Complex treatment regimens: project will proposed a care plan designed to simplify treatment management for patients with multiple myeloma, making it easier for them to stay on track with their treatment regimens.
7. Limited access to specialized care – we will address gaps in access to MM care by connecting patients with a network of physicians, hematologists and oncologists who can provide expert care and guidance.
8. Operational and structural gaps in care including diagnostic tests

The enhanced service delivery model and approach including digital platform for patients with multiple myeloma services to connecting them with a network of specialized physicians, haematologists and oncologists, and providing contextualised care plans, symptom management, and caregiver and family support. The proposed model connects patients with a network of physicians, haematologists and oncologists for in person and remote consultations and second opinions through;

• Providing personalized care plans, tailored to each patient's unique needs
• Offering symptom management strategies and resources to help patients manage their symptoms
• Supporting caregivers through emotional support, respite care, and resource sharing
• Facilitating communication between patients, caregivers, and healthcare providers

Upon enrolled into care through a strengthened service delivery system, patients register on a OneImpact application platform and fill out a comprehensive health questionnaire to establish baseline data on the patients. Care and patients will get access to detailed information on MM with regards the above identified functions.  Patients are supported through navigation and logistical support to schedule in person and remote consultations healthcare providers for personalized guidance and treatment recommendations. Caregivers can access the platform to receive emotional support, respite care, and resource sharing. The approach will also aim at sensitising communities on MM disease, diagnostics, treatment and care support available for carers, patients and families.

Patients will get the ability to interact with other MM patients despite the geographical difference, communication will take the form of messaging, video calling and discussing forum. Sensitisation will also be facilitated through radio and social media for communities and via continuing medical education for medical practitioners. The proposed approach will address health worker knowledge gaps in screening through training on low cost immune histochemical strains, development of standard procedures and address gaps in machines and reagents. Bone Marrow aspirates are currently available but there is no stains for CD38 or CD138 and flow cytometry. The proposed solution will also address gaps in machine availability including a machine for serum protein electrophoresis (SPEP) or Serum Free Light Chains, as there is need for lab support to enhance care and create opportunities for efficient patient navigation for quality care.

The proposed model also aims at supporting patient follow up strategies including community based patient follow up and infrastructure for patient level data capturing. The proposed activities will strengthen community system function on care and support for multiple myeloma patients, while enhancing systems for information dissemination, experience sharing and knowledge sharing.

The solution serves patients with multiple myeloma and their caregivers with the target population including;

• Patients with multiple myeloma - typically aged 60-80 years old, with a median survival rate of 5-7 years after diagnosis.
• Caregivers - family members, friends, or professionals providing emotional, physical, and practical support to patients. Caregivers often experience emotional distress, social isolation, and burnout while caring for loved ones.
• Health Care worker education on MM

The proposed solution will address the following current undeserved Needs;

• Limited access to specialized care - Patients often have to wait weeks or months for appointments with hematologists and oncologists, leading to delayed diagnosis and treatment.
• Inadequate patient education - Patients may not fully understand their condition, treatment options, or symptoms management strategies, leading to anxiety and uncertainty.
• Lack of caregiver support - Caregivers often feel overwhelmed, isolated, and unsupported in their care giving role, leading to emotional distress and burnout.
• Complex treatment regimens - Patients with multiple myeloma require complex treatment regimens, which can be difficult to manage without proper guidance and support.

The solutions will address the needs through;

• Connecting patients with specialized care - The platform will connect patients with a network of experienced physicians, hematologists and oncologists for in person and remote consultations and personalized guidance.
• Providing patient education and empowerment - The platform will offer comprehensive educational resources, symptom management strategies, and personalized care plans to help patients better understand their condition and treatment options.
• Supporting caregivers - The platform will provide emotional support, respite care, and resource sharing to help caregivers manage their own well-being and reduce burnout.
• Streamlining treatment management - simplifying treatment management for patients, helping them stay on track with their treatment regimens and medication schedules.

Addressing the above needs will improve the quality of life for patients with multiple myeloma and their caregivers by:

• Reducing anxiety and uncertainty through education and empowerment
• Improving access to specialized care through remote consultations
• Supporting caregivers through emotional support and resource sharing
• Enhancing treatment adherence through simplified management tools

We have already developed a community led monitoring platforms that is currently active and we would like to explore the possibility of adding new functions in the OneImpact application platform focusing on MM. The application has already been used to collect information on quality of services with a focus on barriers and gaps in service access and with an ability to deliver surveys, the platform will also be used to document patient needs, experiences and feedback. Current community care components in the country do not excluded cancer care, hence this is an attempt to strengthen community systems for cancer care through use of the proposed service delivery model and platform.

1. Digital Healthcare Landscape –  the proposed project will establish a new standard for digital health solutions in oncology, showcasing the power of technology in improving patient outcomes and caregiver support.
2. Caregiver-Focused Solutions - By prioritizing caregiver support, the proposed project will inspire a shift towards more comprehensive care models that acknowledge the critical role caregivers play in patient care.
3. Patient-Centered Care - proposed project’s focus on personalized care can redefine what it means to provide patient-centered care, emphasizing the importance of individualized treatment plans and continuous patient engagement.
4. Healthcare Industry Partnerships – proposed project will foster new partnerships between healthcare organizations, NGOs and technology providers, driving innovation and growth in the healthcare industry.

Our goal for applying to the prize is to create highly impactful and innovative ventures with influential entities driving innovation, research and development. Getting the support from the Prize will go a long way in;

• boosting financial Support -  enable us to overcome scalability barriers by investing in infrastructure, personnel, and technology.
• enhanced expertise - network of mentors and experts will provide valuable guidance on regulatory compliance, data analytics, and marketing strategies.
• increase networking opportunities - connect us with potential partners, investors, and stakeholders who will help us advance our solution.
• enhanced recognition - increase our credibility and visibility within the non-profit and healthcare industry, attracting more attention from investors, partners, and users.

Our team has a combination of skills, expertise, and resources necessary in successfully implementing the proposed project including;

• Technical Expertise – one of our partners has strong background in software development, data analytics, and AI/machine learning with experience with cloud-based technologies for scalability and reliability while familiar with healthcare IT infrastructure and regulatory requirements.
• Healthcare Knowledge - our team has in-depth understanding of multiple myeloma and its treatment landscape in Zimbabwe including knowledge of patient engagement strategies and caregiver support models.
• Business Development and Marketing – we have a proven track record in developing business partnerships and strategic alliances with experience in marketing and promoting digital health solutions to healthcare providers, patients, and caregivers backed by a detailed understanding of market trends.
• Project Management – we use a myriad of project management methodologies to ensure efficient delivery, strong communication and stakeholder management which supports collaboration with teams, partners, and patients.
• Financial Management – Our team has experience with budgeting, financial planning, and resource allocation with a track record of securing funding from funders, grants and other sources.

In addition to these skills and expertise, our teams have:

• A strong network - have established partnerships with healthcare providers, patient advocacy groups, and other stakeholders for buy-in and support.
• Collaborative mindset – foster a culture of open communication, continuous learning, and adaptability within the team towards achievement of mutual goals
• Emphasis on patient-centricity - Prioritize patient needs and preferences in all aspects of the solution development and deployment.

The proposed project will achieve the following short-term impact goals in the next  year :

Patient Engagement

• Enroll at least 100 patients with multiple myeloma in our platform within the next 12 months.
• Achieve an average patient engagement rate of 80% (measured by user activity and feedback).

Data Collection and Analytics

• Collect and analyze data from at least 1,000 patient records, focusing on key metrics such as treatment response, patient-reported outcomes, and quality of life.
• Develop and implement robust data analytics capabilities to provide actionable insights for patients, caregivers, and healthcare providers.

Healthcare Provider Adoption

• Establish partnerships with at least 5 major healthcare providers, securing access to their patient populations and clinical data.
• Achieve a 30% adoption rate among healthcare providers within the next year, measured by the number of providers using our platform.

The following long-term impact goals will be achieved in the next five years:

Patient Outcomes

• Reduce the time to diagnosis by 20% through our platform's early detection capabilities.
• Improve patient response rates to treatment by 15% through personalized care plans and interventions.
• Enhance patient quality of life by 12% through proactive symptom management and caregiver support.

Healthcare Provider Adoption

• Achieve a 60% adoption rate among healthcare providers, making our platform a standard of care for multiple myeloma management.
• Expand our partnerships to include at least 20 major healthcare providers and pharmaceutical companies.

Research and Development

• Develop and integrate new features, such as AI-powered chatbots for patient support and advanced analytics for precision medicine.
• Collaborate with leading research institutions to develop new treatments and therapies for multiple myeloma.

Our proposed project will measure and achieve these goals

• Key Performance Indicators (KPIs): Track metrics such as patient engagement rates, data collection rates, provider adoption, and patient outcomes to measure progress toward our goals.
• Regular Reporting: Conduct regular reviews of progress, including quarterly business reviews and annual reports, to assess performance and identify areas for improvement.
• Stakeholder Feedback: Gather feedback from patients, caregivers, healthcare providers, and partners to inform product development and improve the overall solution.
• Collaboration: Foster strong relationships with key stakeholders, including healthcare providers, pharmaceutical companies, and research institutions, to drive innovation and collaboration.

Problem Statement - Patients with multiple myeloma face significant challenges in managing their disease, including delayed diagnosis, inadequate treatment, and poor quality of life.

Desired Outcomes

• Improved Patient Outcomes - Patients with multiple myeloma experience better health outcomes, including improved treatment response rates, reduced symptoms, and enhanced quality of life.
• Enhanced Patient Engagement - Patients are more engaged in their care, making informed decisions, and actively managing their condition.
• Increased Efficiency - Healthcare providers and caregivers are more efficient in their work, reducing administrative burdens and improving patient care.

Assumptions

• Data Collection - Accurate and comprehensive data collection is necessary to inform personalized treatment plans and track patient outcomes.
• Digital Technology: - analytics can identify patterns in patient data, predict treatment outcomes, and provide actionable insights for healthcare providers.
• Patient-Centered Design - A patient-centered design approach will ensure that the solution is user-friendly, intuitive, and responsive to patient needs.

Logic Model

• Input: Data collection from patients with multiple myeloma through our platform.
• Process: analytics process patient data to identify patterns and predict treatment outcomes.
• Output: Actionable insights provided to healthcare providers for personalized treatment plans.
• Outcomes: Improved patient outcomes, enhanced patient engagement, and increased efficiency in healthcare delivery.

Theory of Change Logic:

• Pathway 1: Data collection → data analytics → Actionable insights → Improved patient outcomes
• Pathway 2: Data collection → data analytics → Actionable insights → Enhanced patient engagement
• Pathway 3: Data collection → data analytics → Actionable insights → Increased efficiency

Full time - 

• MM Project officer

Level of Effort operational support to project from 

1. Executive Director (10%)
2. Program Manager (10%)
3. Finance & Admin Manager (10%)
4. Health Technical Manager (10%)
5. Finance officer (10%)
6. Admin Officer (10%)

Part time: 

1. 2 x medical officers
2. 2 x Nurses 
3. 2 x Specialist Physicians
4. 1 x Orthopedic surgeons
5. 1 x Oncologist 
6. 1 x Specialist Hematologist

Contractors: 

• Dure Technologies (Geneva)

Other workers: 

• Community Health Workers, Health Facility Nurses

The project was implemented from April 2022 to December 2024 as part of a 4 organisation consortium including University of Zimbabwe, JHWO, ZiCHIRE BC and Cancer Association of Zimbabwe. A implementation team included special hematologists, physicians, general practitioners, project officers and social workers who implemented demand and supply activities to improve knowledge of MM, access to MM diagnosis, treatment, care and support. JHWO took lead of the community care systems strengthening aspects, facilitating supporting groups, payment of transportation for the most vulnerable patients, community education, sensitization and mobilization.

The proposed project brings together diverse and dynamic teams, committed to ensuring that every individual feels valued, respected, and empowered to contribute their unique perspectives and skills. JHWO and project partners will foster an inclusive environment that minimizes barriers to opportunity and celebrates the diversity of our team. Our leadership team has a diverse range of ages, genders, ethnicities, and backgrounds including linguistic diversity. JHWO actively recruits and works with individuals from underrepresented groups, and strive to create a culture where everyone feels comfortable bringing their authentic selves to work. JHWO leadership style creates a welcoming and inclusive environment, including regular discussion on and addressing any biases and concerns that may arise. 

JHWO operational approaches set clear targets for diversity, equity, and inclusion with a goal of maintaining representation of underrepresented and underserved groups within our organization. We achieve this goal, by implementing a variety of strategies, including targeted recruitment, mentorship, and training sessions, while recognize the importance of providing equal opportunities for all staff members. In that regard, we have a comprehensive benefits package including inclusive policies (flexible working arrangements, family leave policies, and access to mental health resources)

JHWO has also established a variety of employee resource groups that provide a safe space for staff members to connect with others who share similar interests including whatsapp social and work groups, which offer a platform to share their experiences, provide support, information and resources to one another, and contribute to the development of our organization's diversity and inclusion initiatives.

JHWO leadership and staff ensures the organization is accessible and inclusive, have implemented a range of accessibility initiatives, including wheelchair-accessible facilities, and closed captions on all meeting recordings. To further enhance organisational inclusivity, JHWO has a comprehensive feedback system that encourages open communication and transparency including suggestions boxes, Whistle blowing hotlines, Safe guarding focal persons and a comprehensive HR policy that aims towards creation of a safe work environment for all employees. Organisation generally maintains an open door policy and staff members are encouraged to share thoughts and concerns with leadership at any time, with clearly established channels for reporting incidents of harassment, unaccountability, discrimination and other policy violations.