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 to access scientific, technologic, 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 the smallest country in Central America, bordered by the North Pacific Ocean and located between Guatemala and Honduras; it has a land area of 20,721 km2 and 320 km2 in water. The 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 and has national coverage of all pediatric cancer cases.

Leukemia (48%) is the most frequent pediatric cancer in our community, followed by Lymphomas (13%) and Central Nervous System Tumors (12%). Net survival for Acute Lymphoblastic Leukemia (ALL) is around 40-49% in El Salvador.  Every year 48 patients out of every 100 newly diagnosed cases die. Childhood cancer is one of the most common cause of death among non-communicable diseases in this country for pediatric population. 

Multiple factors contribute to low cure rates, adherence, defined as the extent to which families follow medical indications and treatments has been identified as an important factor to treatment success or failure. Poor adherence to oral chemotherapy has been established as one of the most important predictors of relapse and subsequent treatment failure and death. Whereas intravenous medication is administered at treatment centers, oral medications rely on caregivers and can't be directly measured by the care team. Monitoring oral adherence is important for teams in order to tailor clinical and educational interventions to fit patients needs and optimize treatments and save lives.

Our team does not have a way to monitor oral adherence other than directly asking the family. Verbal family reports can be inaccurate and sometimes willingly omit gaps in medication adherence due to caregiver error. Available technologies such as electronic pill counters can be expensive for cancer centers located in LMICs and don't provide an accurate measure as directly seeing the patient taking the medication would. These technologies also can't avoid caregiver forgetfulness to timely provide the medication. Other barriers include decreased motivation among patients to take bitter medications that cause unwanted side-effects. 

Thus, socially accepted and cost-effective technology that allows teams to witness patients taking oral medications at home and increase motivation among patients is needed to save lives through optimizing oral therapies.

Our solution is a mobile application aimed at children and adolescents with cancer. The FAVapp includes functions that tackle multiple dimensions of adherence. 

Because our team needs to monitor oral adherence, we created a game called "Magic pills" where patients can send daily videos to the team doing various activities while taking the medication on camera and showing the pill wrapping.

The game has three different play modes: Basic, where patients just record themselves taking their medication; Challenge, patients select a challenge (i,e. sing while you take your medication) and Creative, where they can send a video doing whatever they like and think is fun. 

In order to maximize the number of videos received we created a token economy system where per each video, patients receive a number of points that can later be interchanged for prizes. This is a token economy system that will allow the team to assess oral adherence to life-saving chemotherapy and increase motivation among patients. 

Patients can also win badges after completion of numbers of chemotherapy cycles without forgetting to take the medication. In the example below, this patient has won 29 points for taking their medication and a "Adherence ambassador" badge for completing a full treatment phase without failing to take their pills. 

The videos can be publicly shared with other users (Users are authorized by the app administrators and can only be part if they are patients, caregivers or team members). Peers, parents and team members can like these videos and earn additional points, this way social reinforcement is included.

Because adherence is a multifactorial issue, we have included a section that displays real time the assigned medications to take at home and their indication on how to take. The example below shows that a patient needs to take a pill of 6-Mercaptopurine at noon. The system also sends daily push notifications to remind the patient to take their medication and earn points. 

For each medication, families can record side-effects and are prompted to consult immediately if the patient has a life-threatening effects. In the example bellow, the family has marked that the patient had fever and a seizure event in the last hours. The system will automatically display a warning prompt to consult. 

These reports can later be used for policy and decision making process at the time of designing protocols or guidelines. 

Families can consult upcoming medical appointments and the system sends alerts and push notifications one day before the scheduled appointment. This function displays date, specialty, location and additional indications. 

The care team is responsible for loading medication and appointment information into the databases as well as reviewing videos, assigning scores, checking side-effects reports and awarding prizes at the cancer center. 

El Salvador's National Childhood Program is supported by Fundación Ayúdame a Vivir. The program has national coverage of pediatric cancer and receives around 258 new childhood cancer cases annually and treats 350 patients per year in an age range of 0-<18 years. 

According to socioeconomic interviews, 51% of our pediatric cancer population lives in extreme poverty and 49% of our patients live within a subsistence economy.  75% of children with cancer in El Salvador have to travel between 2-12 hours to reach the hospital, and only 25 % of the patients live in the surrounding cities near the hospital. 

Abandonment of treatment rates in low and middle-income countries is high due to poverty, lack of access to treatment, and socioeconomic factors, but in El Salvador the abandonment of treatment rate is less than 1%, primarily fostered by education to the caregiver and a tracking protocol that allows healthcare personnel to detect absences in real-time. 

Children and adolescents in El Salvador are a historically neglected population. Funding for our program relies on charitable support because the government allocation of resources for pediatric cancer only covers a small part of expenses in medication, food, supplies, physical spaces and staff salaries. 

This application will have a meaningful impact on survival. By reminding families to take the medication we mitigate the human error factor. Increased adherence to oral medication will allow oral drugs to exert their máximum therapeutical properties. With optimal doses of medications remissions are more likely to occur and children and adolescents diagnosed with cancer can have better chances to have a long and meaningful life. 

The game and the token economy system will also increase motivation which will promote adaptation to treatment and help build resilience towards unwanted side-effects. We aim at making treatment for children and adolescents less painful and more rewarding in the short-term. 

Our team has population-level access to children and adolescents with cancer. Because our program has national coverage and provides care along the cancer continuum, we work with our patients since diagnosis to survivorship or death. We have built strong relationships with patients and family members, some of those span decades. 

The clinical and administrative staff work close with families. For instance, the same team of psychologists, physicians and nurses provide care since day one and keep working with families even years after a child's recovery or death. Thus, every staff member, care provider, patient and supporter is part of a community with the same objective. 

The psychology team is leading this project and is composed of three people, Carmen, Carolina, and Alvaro.  Our office is based at our center, which means we have daily contact with patients and their families. 

We have reach further than the family that comes to the center to the local community where patients live. Through support from neighbors, city halls, local hospitals and clinics, schools and extended family, we make sure every child and adolescent with cancer has the care they need and deserve. Families trust out team and believe in our endeavor of saving lives, for example, in 2018 Gabriel, one of our patients accepted the opportunity to ask global leaders at the UN assembly to increase funding and support for children with cancer as a sign of trust in our team and allies. 

To understand the needs or our patients, their families and communities we do qualitative research to get in-deep insights of their agendas and visions. For the conceptualization of this project, a qualitative research consisting of semi-structured questions was performed to understand their perception of oral medication and the barriers they face to comply with prescriptions. A focus group with care providers was developed to verify if this technology would be socially acceptable. We can state that families and patients are willing to send their videos and believe that having a reward system based on prizes and social reinforcements will be welcome. 

Right now the app is already developed. Initial testing support the idea that all functions work fairly good. An initial version (1.0) is ready to be 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).

The screenshots shown above are real and were taken during out initial testing. 

We have already passed the concept stage of exploring the idea and have verified that FAVapp is a socially acceptable idea, can be sustainable and have a positive effect on survival. As expressed above, for this stage we developed a research consisting in individual interviews and a focus group. 

At this time no patients are using FAVapp for being in a prototype stage. 

Financial barriers: Fundación Ayúdame a Vivir is a non-profit organization and relies on funding from donors. In order to have an mobile application running, we need to find opportunities to pitch to investors and/or funders to pay for subscriptions, storage and additional support staff. 

Onboarding: New technologies can be socially accepted but still need to be adopted by communities. SOLVE can help us connect with experts who will help FAVapp to be seen by families and team members as a key resource to save lives. Thus, this will increase usage. 

Technical: Eventually the FAVapp will need to increase its capabilities. We expect to use AI to identify the medication name on the wrapping show by the patient and then automatize the scoring process. When the user number increases an automated process to move appointment, medication and patient data will have to take place. Thus, the application storage will also need to be increased and new technologies involved. Technical consulting will be a needed to grow according to the market standards. 

Growing: To be able to have an organized growth, we need solutions to increase our team capabilities and management. This is important so we can jump to scaling where other pediatric cancer programs can be involved. 

Scaling: We believe that FAVapp is a solution that can be used in pediatric cancer programs around the world. Because we have found a way to visually verify that our patients take their medication other teams can also monitor their patient's progress. Around the world, most pediatric cancer programs include oral medication in their treatment protocols. Thus, we need support to pitch and market this idea to other program leaders and develop tailored versions for their specific needs. Most important our teams needs consulting in how to prepare our organization to lead this effort. 

The most common approach to measure medication adherence is clinical proxy report. This is, families reporting to care team their medication taking habits. Other technologies involve electronic pill counters to measure drug consumption. The problem with this approach is that caregivers are unable to actually see the patient taking the right medication at the right time during a timeframe. Therefore inaccuracies can occur out forgetfulness and even dishonesty. This approach also prevents care teams to monitor adherence in real-time. 

Our solution offers an innovative approach that allows our team to actually see our patients complying with medical indications at home. The rules of the game clearly establish that the wrapping need to be readable and the pill need to be taken clearly from it. We understand that some people may interpret this approach as invasive and distrustful from the team. This is why the game and a token economy system makes sending a video more friendly and goal-oriented. 

Our app is not only a game, most similar applications only record user or care provider generated data. FAVapp integrates everything in a single environment that can be accessible to caregivers and patients.

For the next year our major impact goals are:

• A publicly released version of FAVapp is being used by 70% of all elegible patients and families in El Salvador. 
• Our team has identified and intervened with 100% of those patients who face barriers to comply with medical indications for oral chemotherapy agents through FAVapp.
• A baseline of data regarding adherence to oral chemotherapy agents. 

In five years out impact goals are:

• An increase in net survival rate to at least 80% at the six types of pediatric cancers (Acute Lymphoblastic Leukemia, Hodgkin Lymphoma, Retinoblastoma, Wilm's tumor, Burkitt's Lymphoma and Low Grade Glioma) focused by the WHO Global Initiative for Childhood Cancer by 2030 in El Salvador.

• Changues in yearly net 5 year event-free survival rates in El Salvador.
• Number of FAVapp downloads in El Salvador.
• Number of families sending valid videos taking oral medication via FAVapp. 
• Number of families reporting unwanted side-effects via FAVapp. 
• Mean number of chemotherapy cycles completed out of chemotherapy cycles prescribed without gaps in oral medication adherence per patient in El Salvador.
• Number or pediatric cancer programs outside El Salvador adopting FAVapp.
• Number of yearly new users in pediatric cancer programs outside El Salvador.
• Mean number of chemotherapy cycles completed out of chemotherapy cycles prescribed without gaps in oral medication adherence per patient in each international program.

We believe that by monitoring oral adherence to medication on a daily basis we could identify those cases that need more support so their treatment regimen is always complete and become more likely to achieve a favorable clinical outcome.

Our inputs will be the following:

• Funds: Investment will be focused on paying for an Apphive yearly subscription to compile an Android and iOS version of FAVapp, as well as a dissemination campaign, salary for a data manager, and increase prize existence.
• Technological resources: Institutional internet connection, Apphive account, current electronic medical records. 
• IT Staff: For this project hiring an additional developer is required. Current IT staff will assume the responsibility of supervising the scaling and implementation of new functions development of FAVapp and representing Fundación Ayúdame a Vivir during coordination with IT staff with other pediatric cancer programs.                                  

We will use these inputs to develop the following activities:

• Perform a pilot study with a sample of families using a test version.
• Assess UI and UX satisfaction. 
• Verify videos uploaded by families.
• Record oral adherence patterns among patients.
• Release a public version in PlayStore and AppStore.
• Implement suggestions for changes in UI and UX.
• Increase the number of functions.
• Pitch FAVapp to regional pediatric cancer programs.

Based on these activities  we expect the following outcomes:

Short-term outcomes (6 months):

• A 1.0 version has been released in PlayStore and AppStore.
• At least 70% of all elegible patients are using FAVapp.

Intermediate outcomes (2-3 years):

• An AI model has been trained and implemented to automate the scoring of videos and reduce human errors.
• At least 5 regional pediatric cancer programs have adopted FAVapp as an oral adherence monitoring program.
• In regard to oral adherence we expect an increase of oral medication adherence to chemotherapy agents of 60% of total prescribed cycles in 2026 in El Salvador.
• Globally, we expect that at least that the programs that adopt our app increase their oral medication adherence by 50% by 2026.

Long-term outcomes (4-5 years):

• An increase in the net 5 year event-free survival rate by 2028 in El Salvador.

Impact goals are as follows:

• Our major impact goal is an increase in net survival rate to at least 80% at the six types of pediatric cancers (Acute Lymphoblastic Leukemia, Hodgkin Lymphoma, Retinoblastoma, Wilm's tumor, Burkitt's Lymphoma and Low Grade Glioma) focused by the WHO Global Initiative for Childhood Cancer by 2030 in El Salvador.
• Globally, we expect an increase in net 5 year event-free survival rate to at least 80% at the six types of pediatric cancers (Acute Lymphoblastic Leukemia, Hodgkin Lymphoma, Retinoblastoma, Wilm's tumor, Burkitt's Lymphoma and Low Grade Glioma) focused by the WHO Global Initiative for Childhood Cancer by 2030 among the programs that adopt our solution

The core technology used in FAVapp is a mobile application development platform (Apphive) that has allowed our team to develop this application using drag and drop elements to build an UI and a graphic interphase to set databases rather than coding in IDE's using common programming languages. This platform allows us to create native versions of FAVapp for Android and iPhone users. 

The platform we use has scalable plans and allows development free of cost, it also provides great customer and technical support. It includes API functions, Firebase and Apple compilation and an option to convert FAVapp into a Web App compatible with other mobile operating systems.

The project team has worked together for many years and on many projects, sharing common goals, expectations, and a passion for the pediatric oncology program. We have respect and appreciation for the contributions each team member delivers and with this respect for each other comes a fair distribution of power, recognition, and risks. We share the same values and goals: union and passion, respect and compassion, and honesty. We belong to the same team and we work together to achieve our mission to help all children with cancer in El Salvador live. Each one of us is a key piece to achieve our goal and we are united by our passion for the cause. We believe we are equal. That is why we treat all of our patients, staff, volunteers, visitors, donors, and stakeholders with respect, kindness, and compassion. We are committed to the responsible and ethical management of our resources. 

Additionally our organization has a policy of zero tolerance to discrimination and a clear code of ethics that states that "there won't be discrimination gender, age, religious beliefs or any other individual or personal characteristic".

We are a non-profit organization, our funds come from donations and grants, we’ve been operating under this model for 30 years. To achieve financial sustainability we have relied on our strong fundraising department. This team will be key to becoming financially sustainable, through this staff, we can obtain funding to maintain hired staff, purchase supplies and pay for services at the end of our partnership with Solve. Our fundraising team is well-trained in the field of fundraising for pediatric oncology.

Funding for the national cancer program comes from the government, through the Ministry of Health, and fundraising by Fundación Ayúdame a Vivir. From this funding comes all chemotherapy, antibiotics, staff salaries and supplies. Patients from all over the country are referred by primary and secondary level hospitals and once a cancer diagnosis has been established, they are immediately admitted to the program. Patients might have out-of-pocket expenses, like travel expenses, and this is also sometimes covered by FAV and its allies. 

One of the major sources of revenue is the donor program which has existed for 30 years. In 2021 Movimiento Amarillo replaced the existing donor program and it came with benefits for our donors. Recently, our fundraising team has launched a discount card for monthly donors starting at $10/month. This card allow them to receive discounts in a network of restaurants, shops and services providing a benefit for donors and supporting local business.

Multiple fundraising activities and strategies are take place every year, including campaigns, races, bingo parties, among others.  

The financial sustainability plan for FAVapp can be divided into two phases. The first phase relies on donations and grants. We are currently working in this phase with our fundraising department to get funding to pay for a yearly subscription that includes Android and iOs compilation, database storage, marketing and tracking tools. With this funding we will be able to operate for at least a year. Part of the funds we are seeking will be dedicated to increase warehouse existence of prizes. 

During the second phase we plan to sell subscriptions to other pediatric cancer programs in the region. Because this application needs to be managed by members of the care team, institutional databases and access will be created to ensure confidentiality for each pediatric cancer program. We plan to charge a initial membership fee as well as a monthly rate for maintenance depending on the number of users on each program. Fees can be determined based on financial capability studies for each program so FAVapp becomes an affordable tool that can provide value and supports our operation and institutional missions.

Central American countries all have a national pediatric cancer program that survives through their non-profit organizations. All countries share their success stories regarding fundraising. The objective is to share FAVapp with these countries and help them monitor and increase their oral adherence to improve their clinical outcomes. 

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.

Fundación Ayúdame 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. Built in 2008, the day clinic had become small for the patients and personnel. Caregiver's bathroom areas were improved, a resting area was created for caregivers, an area for adolescent patients was made, a school space was renovated, office spaces were created for staff who had no working areas, and the play area for children was improved.