FAVApp

Children and adolescents with cancer living in Low-and-middle Income Countries (LMICs) continue to have lower cure rates than those living in High-Income Countries (HICs) due to inequalities in scientific, technological, and therapeutic advances in pediatric cancer care. In LMICs, only around 20% of children with cancer can be cured, compared to HICs where more than 80% of cases reach a cure. In the region of Latin America and the Caribbean 29,057 new cases are diagnosed yearly, representing 10.4% of all cases of pediatric cancer globally.

El Salvador is a low and middle-income country where only 20% of the population has health insurance. The remaining 80% are covered by the Ministry of Health. The demand for health coverage is high, given that approximately 44% of the nation is aged 0-19 years old. The National Childhood Cancer Program receives 200 new patients yearly.  Survival rates have increased from 5% in 1994 to 70% in 2020 and treatment is free of charge for patients.  El Salvador´s pediatric cancer program is a level 2 cancer center, within a tertiary pediatric hospital.  Aside from medical and treatment appointments, cancer patients also travel to the hospital when treatment complications arise.  

Multiple factors contribute to low cure rates in LMICs.  Misdiagnosis and delayed diagnosis, socioeconomic difficulties, inadequate supportive care, treatment abandonment, death from toxicity, and difficulty accessing care all contribute to lower cure rates. Violence,  poverty, and long distances further complicate access to treatment in Central American countries.  

Education and communication between healthcare providers and caregivers of children with cancer are crucial to guaranteeing the best care possible for children with cancer in LMICs. When children with cancer are home, caregivers are responsible for making decisions. When emergencies arise at home, most patients consult at primary and secondary healthcare centers near their homes for treatment-related complications and are transferred to the tertiary care hospital. However, primary and secondary care centers lack the knowledge and expertise to treat the complexities of pediatric cancer patients, resulting in delayed care for potentially life-threatening conditions. Approximately 10% of patients in treatment die from treatment-related complications, which can be decreased through proper leadership and supervision.  

FAVApp will be usable by caregivers offering information and patients´ personal clinical information and for health care professionals with access to patient information, self-report measures for better symptom management as well as being able to provide telemedicine to caregivers and communication to offer professional assistance to public healthcare providers to manage symptoms locally and decrease patient´s unnecessary travel to the hospital and reduce patient mortality.  

The introduction of initiatives like FAVApp can potentially address some challenges by improving communication between healthcare providers and caregivers, offering better symptom management through self-report measures, and providing telemedicine services to reduce unnecessary hospital visits and mortality rates.

Here are some key points and suggestions based on the information provided:

1. Improving Access to Care: Given that many patients in LMICs have to travel long distances to access care, telemedicine can play a crucial role in providing remote consultations and support. Movimiento Amarillo can facilitate this by offering telemedicine services to caregivers, allowing them to consult healthcare professionals without the need for travel.

2. Enhancing Education and Communication: Educating both healthcare providers and caregivers about pediatric cancer is vital for early diagnosis and proper management. FAVApp can serve as a platform for sharing information and resources, providing educational materials for caregivers, and facilitating communication between caregivers and healthcare professionals.

3. Symptom Management: Providing tools for better symptom management through self-report measures can help caregivers monitor the child's condition and report any concerning symptoms promptly. This can lead to early intervention and potentially reduce treatment-related complications and mortality rates.

4. Support for Primary and Secondary Healthcare Centers: Since primary and secondary healthcare centers often lack the expertise to treat pediatric cancer patients, FAVApp can offer support and guidance to healthcare providers in these settings. This can include remote consultations with specialists, access to treatment protocols, and assistance in managing treatment-related complications.

5. Data Management and Patient Privacy: It's essential to ensure that FAVApp complies with data protection regulations and safeguards patient privacy and confidentiality. This includes implementing secure data storage practices, obtaining informed consent from patients and caregivers, and adhering to relevant laws and regulations.

Overall, initiatives like FAVAPp have the potential to make a significant impact on improving outcomes for children with cancer in LMICs like El Salvador. By addressing the challenges of access to care, education, and communication, such platforms can help bridge the gap in pediatric cancer care between low- and high-income countries.

El Salvador is the smallest country in Central America, with a land area of 20,721 km2. The country has registered persistently low economic growth levels due to violence and poverty. According to the International Monetary Fund, GDP per Capita is equal to $ 9,139.70 per year. The publication entitled "Projections and Estimates of the Population of El Salvador (1950-2050)", produced by the Ministry of Economic and General Office of Statistics and Censuses, reports the projection of El Salvador's total population for the year 2020 of  6,765,935 inhabitants. The pediatric population (0-18 years) constitutes 35%. 

El Salvador´s National Childhood Cancer Program, supported by Ayúdame a Vivir Foundation in alliance with Children National Hospital Benjamin Bloom and St. Jude Children's Research Hospital, was established in 1993.  Since its beginnings, the program has sought access to comprehensive treatment for Salvadoran children with cancer, improving their quality of life and their families in all stages of the disease. The program has national coverage of pediatric cancer and receives 200 new childhood cancer cases annually and treats 350 patients per year in an age range of 0-<18 years. Treatment is free of charge for patients, but the disease incurs in out-of-pocket expenses, like travel allowance. Leukemia (48%) is the most frequent pediatric cancer in our community, followed by Lymphomas (13%) and Central Nervous System Tumors (12%). The treatment for patients can last a minimum of nine months to a maximum of two years and a half.  According to socioeconomic interviews, 51% of our pediatric cancer population lives in extreme poverty and 49% of our patients live within a sustainable economy.  75% of children with cancer in El Salvador have to travel between 2-12 hours to reach the hospital. 

Progress in childhood cancer treatment has resulted in survival rates of over 80% in High-income Countries (HIC). The reality is different in low and middle-income countries, where approximately 80% of children with cancer are diagnosed but only 20% are cured. In El Salvador, cure rates are 65%. Abandonment of treatment rates in low and middle-income countries is high due to poverty, lack of access to treatment, and socioeconomic factors.  El Salvador has an abandonment of treatment rate of less than 1% due to the team's efforts in education and communication. 

The team intends to focus now on maximizing the benefits of technology and making alliances with primary and secondary attention healthcare providers. We have wanted to create our app for caregivers and patients for many years, primarily to provide more education on cancer treatments and the management of side effects and complications. With a cancer diagnosis, comes a lot of information and responsibilities for caregivers to manage. From appointments, medicines, side effects, and the hospital routine, caregivers need guidance with information. The national pediatric cancer program educates caregivers from the point of diagnosis on specialized topics to provide ongoing care for these children. Education includes diagnosis and treatment, teaching specialized skills for at-home care, and assessing potential life-threatening complications that require immediate medical intervention. 

The team's commitment to supporting patients and their families throughout the cancer continuum, from diagnosis to survivorship or end-of-life care, demonstrates a deep understanding of the holistic needs of patients and their families.

Here are some key strengths and aspects of the team's approach:

1. Comprehensive Care Model: The team's approach extends beyond medical treatment to encompass psychological and emotional support, as well as long-term follow-up care. This holistic model recognizes the diverse needs of patients and families and emphasizes continuity of care throughout the cancer journey.

2. Multidisciplinary Collaboration: The collaboration among various professionals, including oncologists, psychologists, nurses, and members of the board of directors, ensures a comprehensive and well-rounded approach to problem-solving and decision-making. This multidisciplinary approach allows for diverse perspectives and expertise to be integrated into the development of solutions.

3. Adaptability and Innovation: The successful implementation of telemedicine during the pandemic highlights your team's adaptability and willingness to embrace innovative solutions to enhance the quality of care. By leveraging technology, the team has been able to overcome barriers to access and provide timely support to patients and families, even from a distance.

4. Community Engagement: The team's strong relationships with patients, families, and supporters create a sense of community with a shared goal of improving outcomes for pediatric cancer patients. This collaborative approach fosters trust, engagement, and a supportive environment for all stakeholders involved.

5. Long-term Vision: The long-standing idea of developing an application for patients and providers reflects your team's forward-thinking approach to leveraging technology to enhance education, communication, and support. By recognizing the importance of addressing patients' needs beyond the hospital setting and embracing technological solutions, the team has demonstrated a commitment to continuous improvement and innovation in pediatric cancer care.

Overall, the team's dedication, collaboration, and innovative spirit are instrumental in advancing the quality of care and quality of life for children and adolescents with cancer. By prioritizing the holistic needs of patients and families and embracing technology as a tool for improvement, the team is making a significant impact in the field of pediatric oncology.

Currently, the only version of the app that has been developed is the adherence module.  This module is aimed at children and adolescents with cancer and includes functions that tackle the multiple dimensions of adherence.   Through games, patients are encouraged to send daily videos to the team while taking their oral medication on camera and showing the pill wrapping. Initial testing supports the idea that all functions work fairly well. An initial version (1.0) has been tested by a group of families in Android mobile devices for UI and UX. Our communications team is working on a roll-out campaign. Our warehouse has a supply of toys for variable ages to be used as prizes. The prize scheme has already been developed by the psychology team. Processes to ensure proper data input are already written and support staff is ready. At this time, we are seeking funding to be able to upload FAVapp at major app stores (PlayStore and App Store).

We have already passed the concept stage of exploring the idea and have verified that the module is socially acceptable, sustainable, and may have a positive effect on survival.  For the development of this stage, we did research consisting of individual interviews and focus groups with patients. 

Fundación Ayúdame a Vivir, has ambitious goals for the FAVApp and recognizes the importance of securing funding, onboarding users, addressing technical challenges, and scaling the app effectively. Here are some suggestions and strategies for addressing each of these areas:

1. Financial Barriers:

   • Develop a comprehensive funding proposal that clearly articulates the need for financial support to cover subscription costs, storage, additional staff, and ongoing maintenance of the PediOnc app. Highlight the potential impact of the app on pediatric cancer care and patient outcomes to attract potential investors and funders.
   • Explore various sources of funding, including grants from philanthropic organizations, corporate sponsorships, partnerships with healthcare institutions or pharmaceutical companies, and individual donations. Tailor your pitch to each potential funder's priorities and interests.

2. Onboarding:

   • Collaborate with SOLVE to connect with experts who can help promote the FAVApp within the pediatric cancer community and increase adoption among families and healthcare providers. Leverage their expertise in community engagement and user outreach to effectively onboard new users and drive usage.

3. Technical Challenges:

   • Partner with technical consultants and experts in AI and app development to enhance the capabilities of the FAVApp and address scalability issues. Collaborate with these professionals to implement AI-driven features for medication identification and automate processes for appointment scheduling, medication management, and patient data handling.
   • Continuously monitor and evaluate the technical performance of the app, identifying areas for improvement and optimization to ensure proper functionality and user experience. 

4. Scaling:

   • Develop a strategic plan for scaling the FAVApp to other pediatric cancer programs in low and middle-income countries. Identify key target regions and institutions where the app could have the greatest impact and prioritize outreach and partnership efforts accordingly.
   • Provide training and support for new users and program leaders to facilitate the successful implementation and integration of the FAVApp into existing healthcare systems. Offer customization options to tailor the app to the specific needs and preferences of different program settings, ensuring maximum relevance and effectiveness.
   • Establish mechanisms for ongoing communication and collaboration with partner organizations, fostering a network of support and sharing best practices for app utilization and program management.

By addressing these key areas strategically and collaboratively, your organization can overcome challenges and successfully scale the FAVApp app to improve pediatric cancer care globally.

Although many cancer mobile applications exist, this is an innovative solution tailored specifically to address the challenges faced by cancer patients in low- and middle-income countries (LMICs). By serving as a communication bridge between oncology teams and primary/secondary care centers, it addresses the limited access to specialized oncology care in these settings, potentially improving patient outcomes and reducing mortality rates.  Financial constraints, security issues, and an unstable public health system can exacerbate treatment complications and increase mortality rates. This is particularly innovative in LMIC settings where access to specialized oncology care is limited, enabling healthcare providers to seek guidance from experts and improve patient management in real-time. The inclusion of distance education and training opportunities for healthcare providers further enhances the capacity of local healthcare professionals to diagnose, manage, and refer cancer patients effectively. This aspect is crucial in areas where there may be a shortage of specialized oncology expertise. By integrating the application into the existing National Cancer Plan, it becomes an integral component of the country's healthcare infrastructure, ensuring sustainability and scalability. This alignment with national initiatives enhances the likelihood of long-term success and impact. The application aligns with the WHO Global Initiative for Childhood Cancer, focusing on improving survival rates for childhood cancer in LMICs. Overall, the combination of addressing specific challenges faced exclusively by cancer patients in LMICs, leveraging existing national healthcare initiatives, providing real-time communication and education for healthcare providers, and innovative features such as direct monitoring of medication adherence make this solution uniquely impactful and innovative.

FAVApp could be a crucial solution addressing the challenges faced by pediatric cancer patients in El Salvador. By tackling issues such as limited access to specialized healthcare, long travel distances, and lack of knowledge among primary and secondary healthcare providers, FAVApp has the potential to significantly improve outcomes for these patients.

Empowering pediatric cancer patients and their caregivers with education and resources through a mobile application is a forward-thinking approach. Not only does it provide support and information directly to those affected by cancer, but it also facilitates communication between patients, oncologists, and other healthcare providers. This communication bridge is essential for ensuring timely and appropriate care, especially in managing treatment complications that may arise outside of the hospital setting.

Moreover, the emphasis on enhancing the knowledge and capabilities of primary and secondary healthcare providers in treating pediatric cancer patients within the community is key to addressing the gaps in the healthcare system. By providing education and guidance through the app, FAVApp helps to build local capacity for managing pediatric cancer cases, potentially reducing the need for patients to travel long distances for specialized care.

Overall, FAVApp is a holistic and innovative solution tailored to the specific needs of pediatric cancer patients in El Salvador. By leveraging technology to improve access to information, communication, and healthcare services, it has the potential to make a meaningful impact on reducing mortality rates and improving the quality of care for  patients.

Impact goals for the next year and beyond for this initiative include:

1. Increased Survival Rates: One of the primary goals would be to contribute to achieving the WHO's target of at least 60% survival rates for childhood cancer in low and middle-income countries (LMICs). This could be measured through longitudinal studies tracking survival rates among patients before and after the App's implementation. 

2. Reduced Mortality Due to Treatment Complications: By providing healthcare providers with tools and guidance for managing treatment complications, the aim would be to reduce mortality rates among cancer patients. Tracking the incidence of treatment-related mortality before and after the implementation of the application could help measure this impact.

3. Improved Adherence to Oral Medications: The ability for the oncology team to remotely monitor patients' adherence to oral medications could lead to improved treatment outcomes. Metrics such as medication adherence rates before and after the implementation of the application could demonstrate this impact.

4. Enhanced Communication and Coordination: The application's role in facilitating communication between oncology teams and primary/secondary care centers nationwide could lead to faster diagnosis, referrals, and treatment initiation for new patients, as well as more effective management of complications in frontline patients. Surveys and feedback from healthcare providers on the ease and effectiveness of communication could provide insight into this impact.

5. Capacity Building in Healthcare Providers: Through distance education modules provided via the application, healthcare providers could enhance their skills in diagnosing, treating, and managing cancer patients. Tracking the participation rates in these educational modules and assessing providers' knowledge and skills before and after completion could measure the impact on capacity building

6. Empowerment of Healthcare Providers: Empower frontline healthcare providers with tools and resources to assess, diagnose, and treat complications with the guidance of oncology experts, enhancing their capacity to deliver quality care to cancer patients.

7. Enhanced Education and Training: Provide distance education and training opportunities for healthcare providers through the application, improving their knowledge and skills in diagnosing, managing, and referring cancer patients, particularly in remote or underserved areas.

8. Improved Access to Care: Ensure that cancer patients in remote or underserved areas have access to quality care by facilitating communication between healthcare providers in different regions through the mobile application.
   

The server will have the capacity to host 10 million records and be able to have a stable and secure connection to be able to attend to requests from approximately 500 users.  These users could be patients in treatment, specialists, nurses,  social workers,  and psychologists and allow to register doctors of the national health system that provide some type of care in the community to cancer patients in the program. Hence, the importance of a permanent power supply, connection to the existing power plant, and keeping the backup copies updated. 

A new module that links to the existing Medical Support System (SAM) will be created. This database will allow the consultation and registration of new data through a mobile interface that can be used from anywhere in the world. This will allow having integrated and timely information directly from the people who provide patient care, as well as to keep updated patients' symptoms using a questionnaire uploaded to our server which will be used for consultation. The operating system will be Windows server 2016 and the Mysql database.

Currently, the server does not have an adequate installation which puts the information at risk,  since it is inside the electrical panel room. With sensitive medical information involved, data security is paramount. Implementing encryption, access controls, and regular security audits can help safeguard patient data from unauthorized access or breaches. Therefore it is necessary to consider a space built with safety standards and A-rated materials. This involves rewiring the 23 terminals and moving the Internet fiber optics and the existing link with another friendly institution.

1. Two Psychologists: provide insights into the psychological needs of patients undergoing cancer treatment. 

2. Nurse Educators: provide input on the practical aspects of patient care, including medication management, symptom monitoring, and education materials. 

3. Oncologists: offer clinical expertise on childhood cancer treatments, complications, and side effects ensuring the app provides up-to-date information on protocols, follow-up care, and warning signs of complications. 

4. Member of the Board of Directors: provides strategic guidance and ensures that the app aligns with the organization's mission.

5. IT Engineer:  plays a central role in developing the technical infrastructure of the app, including database design, security protocols, and user authentication. 

The adherence module was developed one year ago. The goal is to grow this product into a comprehensive app which will be useful to caregivers, patients, and other healthcare personnel. 

This is a cohesive and dedicated team working together towards a common goal of supporting children with cancer in El Salvador. Our shared values of union, passion, respect, compassion, and honesty create a strong foundation for collaboration and success. These are some of the team's shared values and beliefs that contribute to the success of the project:

1. Respect and Appreciation: By recognizing and appreciating each team member's contributions, we foster a positive and supportive work environment. This not only boosts morale but also encourages team members to actively engage and contribute their unique skills and perspectives to the project.

2. Fair Distribution of Power, Recognition, and Risks: Ensuring equity in decision-making processes, acknowledging everyone's efforts, and sharing responsibilities evenly fosters trust and unity within the team. This approach empowers each team member to take ownership of their role and encourages collaboration towards shared objectives.

3. Shared Values and Goals: Aligning on common values and goals creates a sense of purpose and direction for the team. It reinforces the collective commitment to making a meaningful impact in the lives of children with cancer.

4. Passion for the Cause: The team's passion for supporting pediatric oncology patients is a driving force behind your dedication and perseverance. It fuels your motivation to overcome challenges and find innovative solutions to improve patient care and outcomes.

5. Ethical and Responsible Management: By upholding ethical standards and responsibly managing resources, you demonstrate integrity and accountability to your stakeholders. This fosters trust and credibility, strengthening relationships with donors, volunteers, and the broader community.

6. Inclusivity and Equality: Treating all individuals with respect, kindness, and compassion reflects your commitment to inclusivity and equality. This inclusive approach not only extends to patients and their families but also to all stakeholders involved in the project.

Fundacion Ayúdame a Vivir (FAV) is truly making a remarkable difference in the lives of Salvadoran children with cancer, providing treatment and care that would otherwise be inaccessible to many families. Their partnership with St Jude Children's Research Hospital and the Ministry of Health, along with the support of various stakeholders, highlights the collaborative effort to address pediatric cancer in El Salvador.

FAV offers a comprehensive range of services, including timely diagnosis, chemotherapy, psychosocial support, and lodging for patients who travel from outside the city. This holistic approach ensures that children receive the necessary medical treatment as well as emotional and practical support throughout their cancer journey.

By providing all cancer treatment free of charge, FAV ensures that financial constraints do not prevent children from accessing life-saving care. This is especially crucial in a country where the majority of families cannot afford cancer treatment, and there are no alternatives in private hospitals.

One of FAV's greatest strengths is its investment in training human resources in pediatric oncology, including oncologists, nurses, and psychologists, to deliver a high standard of care to all patients. This ensures that children receive specialized care, improving their chances of survival and recovery.

Through partnerships with primary and secondary level hospitals, FAV facilitates the referral process for patients diagnosed with cancer. This streamlined approach ensures that children can access specialized care as soon as possible after diagnosis, maximizing their chances of successful treatment outcomes.

FAV's funding model, which combines government support through the Ministry of Health with fundraising efforts, ensures the sustainability of the national cancer program. This funding covers essential resources such as chemotherapy, antibiotics, and staff salaries.

Additionally, recognizing the financial burden that families may face, FAV and its allies sometimes cover out-of-pocket expenses such as travel costs. This further reduces barriers to accessing care and ensures that children can focus on their treatment without worrying about financial constraints.

Financial sustainability can be achieved in two different stages. In the first stage, funding comes from grants and is oriented to building, promoting, and implementing our innovation. This funding is key for developing a strong, secure, and amicable program. Testing is also important to make adjustments. 

When the software is up and running and results, as well as indicators, are achieved, this software can be sold as individual licenses to other pediatric cancer programs in the region and worldwide.

This aligns with the WHO's Global Initiative for Childhood Cancer (GICC), whose target is to achieve at least 60% survival for children with cancer by 2030 by involving governments and increasing countries’ capacity to provide quality services for children. Different levels of subscriptions to the software can be offered to fit the needs of any program.

Fundacion Ayudame a Vivir is a 30-year program that has received funding from different sources. Some examples include funding from Fundacion Gloria Kriete, which provided funds for a Flow Cytometry Laboratory valued at approximately $100,000, which provides a timely diagnosis of pediatric patients with leukemia. The leukemia immunophenotype determination allows the treatment assignment based on the risk stratification of the disease. Before acquiring the Flow Cytometry, diagnoses were made in Guatemala and took up to 3 days.  Today we can make a leukemia diagnosis in 24 hours. 

 In 2013, grants totaling more than $636,000 over two years were awarded to two physicians. One of them was Dr. Soad Fuentes Alabi, who studied the epidemiology and biology of childhood cancer in South America and worked to establish a cancer registry in the region. She set up a cancer registry in Central America, demonstrating that the incidence of childhood cancer was higher than previously thought and showing that, as in other countries, governments need to allocate more resources to cancer programs. 

 Another important grant of $100,000 was given in 2021 for infrastructure. With this funding, the day patient clinic was completely renovated. Recognizing the need for more space, the clinic underwent expansion to accommodate the growing number of patients and personnel. Caregiver's bathroom areas were improved, a resting area was created for caregivers, an area for adolescent patients was made tailored for their own special needs, the school area was renovated, office spaces were created for staff who had no working areas, and the play area for children was improved.