PediOnc

El Salvador is a low and middle-income country where only 20% of the population has health insurance. The Ministry of Health covers the remaining 80%. The demand for health coverage is high, given that approximately 44% of the nation is aged 0-19. The National Childhood Cancer Program, funded by a non-governmental organization, was established in 1993 and 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.  Violence,  poverty, and long distances hinder seeking prompt attention for many patients. Most patients consult at primary and secondary healthcare centers near their homes for treatment-related complications and are then 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 education, leadership, and supervision. 

PediOnc is intended to be a continuation of person-to-person education and to serve as a bridge between oncologists and caregivers, as well as between oncologists and community healthcare providers when they are outside the hospital. By creating this application we have created a portal of information to educate and empower patients, patients and oncology personnel will be able to communicate with each other,  and identify potential allies in the public healthcare system to create a mechanism of provider-to-provider communication. Given that most patients live in rural and often remote areas, the app will serve as a portal for communicating and assisting patients in seeking immediate assistance when complications arise at home. In addition, PediOnc will facilitate adequate treatment in primary and secondary care centers by directing healthcare providers through treatment guidelines for the management of complications from chemotherapy. The app would serve as a clinical guide for the management of potentially life-threatening complications in cancer patients, such as fever, diarrhea, and vomiting. Clinical guidelines for the management of these complications are available in PediOnc. Our app also includes a module for reporting oral medication adherence through videos recorded by family members or patients. Patients are encouraged to register their medication habits in exchange for positive reinforcement. By being treated in their community hospitals, we have minimized unnecessary hospital visits and decreased patient mortality by rapidly treating pediatric oncology emergencies.

El Salvador's National Pediatric Cancer Program, supported by Ayúdame a Vivir Foundation in partnership with Children National Hospital Benjamin Bloom and St. Jude Children's Research Hospital, was established in 1993.  Since its beginning, the program has aimed to ensure access to comprehensive care for Salvadoran children with cancer, improving their quality of life  throughout all stages of the disease. The program has national coverage of pediatric cancer and receives 200 new pediatric cancer cases per year, and treats 350 patients per year in the age group 0-<18 years. Treatment is free of charge to patients, but there are significant out-of-pocket expenses such as transportation costs.  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 led to a survival rate of over 80% in high-income countries (HICs). 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%.  Treatment abandonment rates are high in low- and middle-income countries due to poverty, lack of access to treatment, and socioeconomic factors. 

The team will now focus on maximizing the benefits of technology and partnering with primary and secondary healthcare providers. We have wanted to create our own app for caregivers and patients for many years, primarily to provide more education on cancer treatments and how to address 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 specific skills for home care, and recognizing potential life-threatening complications that require immediate medical attention .The app will allow caregivers to access information at moments when it can be better assimilated and retained.

We believe we can extend the  benefits of the mobile application by reaching primary and secondary health care providers. El Salvador is a country where mobile network coverage is higher than other necessities such as electricity.  Currently, we are aware that many patients are not receiving adequate care in their community hospitals or clinics. Approximately 10% of pediatric cancer patients die from complications of treatment. At the hospital, treatment-related mortality has decreased with the implementation of the Early Warning Assessment Tool (EVAT).  While the patient is at home, complications may arise. Treatment delays lead to health complications, including death. These delays are exacerbated by public hospital health workers' lack of knowledge of how to treat pediatric cancer patients, their workload, and the lack of resources to properly treat cancer complications. By providing guidance and support to healthcare workers, patients can be treated promptly and appropriately. 

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 from their diagnosis to survivorship or death. We have established strong relationships with patients and family members, some of which have lasted for decades. 

Clinical and administrative staff work closely with families. For example, the same team of psychologists, physicians, and nurses provide care from day one and work with families for years after a child's recovery or death. Every staff member, caregiver, patient, and supporter is part of a community with a common goal. 

The Psychology Team leads this project and consists of three people, Carmen, Carolina, and Alvaro.  Our office is located in the hospital, which means that we have daily contact with patients and their families.

The team has been very involved in searching for solutions that increase the quality of care and life in pediatric oncology patients. For example, during the pandemic, telemedicine was successfully launched by the team in early March 2020 and it has now replaced 40% of face-to-face interactions. The team is composed of a multidisciplinary group that respects each other professionally and is open to each person´s contributions. The particulars behind each idea are constructed by the oncologists, psychologists, members of the board of directors, and nurse educators. Each person brings in a different view of the problem with the necessities each may face from their own line of work. One member of the board of directors is also an active volunteer who contributes to the palliative care program and has experience and contact with patients´ needs. The execution of the software creation is the responsibility of the IT software engineer with the aid of the nurse educator, who has been extensively involved in the creation, modification, and execution of the software program.  Many successful additions to the software have been done this way, with each person contributing with ideas and counsel. The idea of the application for patients and providers has been in the mind of the team for a couple of years.  The pandemic made us believe it was even more important to provide education through technology and be able to resolve patients´ emergencies from a distance.

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

Onboarding: New technologies can be socially accepted, but they still need to be adopted by communities. SOLVE can help us connect with experts who will help PediOnc be seen by families and team members as an important resource to save lives. This will increase usage. 

Technical: Eventually, PediOnc will need to expand its capabilities. We expect to use AI to identify the name of the medication on the patient's packaging and then automate the evaluation process. As the number of users increases, there will need to be an automated process for moving appointments, medication, and patient data. Thus, the application storage will also need to be increased and new technologies involved. Technical consulting will be needed to grow according to market standards. 

Grow: In order to grow in an organized way, we need solutions to increase our team capabilities and management. This is important so that we can move to a scale where other pediatric cancer programs can be involved. 

Scaling: We believe that PediOnc is a solution that can be used in pediatric cancer programs in other low and middle-income countries. The app provides a way to visually verify that our patients are taking their medications, thus decreasing non-adherence and ultimately, increasing survival rates of pediatric cancer.  Around the world, most pediatric cancer programs include oral medications in their treatment protocols. We need support to pitch and market this idea to other program leaders and develop customized versions for their specific needs. Most importantly, our teams need guidance on how to prepare our organization to lead this effort.

Psychologists in the pediatric cancer program have daily contact with patients and their families. Our primary responsibilities is providing support and acting as patient navigators. Our close proximity to patients and their families allows us to identify their needs. Furthermore, we are in contact with the patient's community. We make contact with 

Mobile applications for cancer patients have been around for a long time in an effort to help patients with information and routine hospital management. These applications have been developed in many hospitals and treatment centers, customized to the needs of their patients. The situation in low and middle-income countries demands that we create an application with tools that facilitate the management of treatment complications for a population with limited resources. Treatment complications are predictable, and cancer patients are educated and trained to respond to these emergencies. Difficulties caused by financial constraints, security and violence, and an unstable public health system can lead to increased patient mortality. Our innovation is to provide a bridge of communication between the oncology team and the primary and secondary care centers throughout the country where our patients seek emergency care by incorporating this proposal into a national plan.  With the current developments in the National Cancer Plan, childhood cancer will be further integrated into a national policy and will support the WHO Global Initiative for Childhood Cancer, which aims to achieve at least 60% survival rates in LMIC. Healthcare providers will be able to assess, diagnose and treat complications with the guidance of oncology experts. Through the application, they will also receive distance education to enhance diagnosis and referral of new patients and improve management of complications in frontline patients. Oral adherence can only be measured by indirect methods at present; with our application, the oncology team will finally be able to see the patient taking the oral medication.

Our goal for the next year is to socialize the application with the patient population and oncology staff.  A particular focus will be on oral medication adherence, where patients can use the application to document and register their daily medication intake. Through the use of this application, we hope to empower patients and families with information that will ultimately reduce infection-related mortality in patients and familiarize and educate primary and secondary healthcare personnel about childhood cancer. Many pediatric cancer cases are referred late from primary care centers, primarily due to the inability of healthcare providers to recognize early symptoms. Although the primary goal of the application is to ensure that patients in treatment receive timely care from primary care centers to prevent mortality, we believe that a side benefit will be education, which in turn will lead to early referral of future new cancer cases.

In five years, we would like to see this application used by other healthcare users. For example, other chronic childhood diseases could benefit from its use as well as adults with cancer. A key factor in making this happen is the involvement of the Ministry of Health as a stakeholder.

In 1. Evaluate the ease and effectiveness of the application. We need to evaluate whether patients and providers find the application easy to use and whether it is simple to enter and interpret data. 

2. Evaluate the security and privacy of patient data entered into the mobile application. 

3. Evaluate the effectiveness of patient-provider communication and telehealth interventions. 

4. Evaluate the efficiency and effectiveness of provider-to-provider telemedicine by measuring mortality rates.  Mortality should decrease as the patient is managed in primary and secondary hospitals under the guidance of the specialist. 

5. Evaluate the impact of provider-to-provider communication and measure the level of knowledge acquired by primary and secondary health care personnel regarding childhood cancer. Increase early referral of new cases.  

6. Measure patient and caregiver health literacy. Through the application, caregivers should be better educated about cancer and its treatments. This should result in better adherence to treatment and better care of the patient in emergencies.

In El Salvador, 95% of the population has access to a cellular phone and internet. Creating an app will enable communication between patients, specialized oncology healthcare personnel, and primary and secondary healthcare personnel. At present, education is given a the hospital by the team of nurse educators. However, at home parents may lack the confidence and knowledge to make decisions. Furthermore, adherence to oral treatment is unknown and the app may allow us to register this data. Children with treatment complications either go to a hospital near their home or travel to the pediatric tertiary hospital in the nation´s capital. Travel may be long for many, maximizing the risk of complication or death. Caregivers express a lack of prompt or adequate management at these community hospitals. We believe through the application we can foster confidence in the healthcare personnel by providing treatment guidance and counsel. Patients would be treated rapidly before being transferred to the tertiary center. 

Our inputs will be the following:

Funds: Funding will be necessary to achieve our goal. Investment will be focused on paying developers and supervisors fees, contracting cloud services (hosting, database, ssl certificate and backup), buying technical equipment such as programming computers, sponsoring a dissemination campaign, and producing an instructional video. 

Technological resourcesProspective resources: Include databases subscription, server purchasing, programming hardware and software, etc. 

Collaborative partnership: Include internal and external collaboration as follows:

Stakeholders support: We require approval from executive leadership and IT staff

Communicational coordination

Human resources:

IT Staff: For this project hiring an additional developer is required. Current IT staff will assume the responsibility of supervising the development of PediOnc.

Clinical staff: Composed of medical, nursing, and psychologists  will be responsible for developing the information on PediOnc. 

Communications staff: Will assume the responsibility of creating a dissemination campaign and producing a video to inform about the existence PediOnc.

Knowledge:  Knowledge from clinical and IT areas will be key to delivering a well-informed, amicable,  and valuable software. 

Patient’s files: Every child with cancer has during their disease journey loads of data that is safely guarded physically and digitally by our team. This data is the most important source of information to include in the patient's personal account of the app. 

We will use these inputs to develop the following activities:

Meet with stakeholders to create a strategic alliance: We will welcome executive leadership, IT staff,  primary care physicians, nurses, and health promoters at our center to discuss with them information on PediOnc. Their opinions and expertise will be considered to develop secure and responsive software. 

nterview families: We will speak further with families to better understand their trajectory until final diagnosis of pediatric cancer.

The core technology is Apphive, a Software as a Service (SaaS), where logical support and data derived from the application is provided by a platform that can be accessed by our team over the internet. The UI and UX is designed in Apphive, while the storage and database is hosted in Google Firebase. The SAM server will have the capacity to host 10 million records and must have a stable and secure connection to handle requests from approximately 50,000 users per month in Firebase.  These users could be patients in treatment, specialists, nurses, social workers and psychologists, and allow the registration of doctors of the National Health System who 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 backups updated. 
A new module will be created that will be linked to the existing Medical Support System (SAM). This database will allow consultation and registration of new data through a mobile interface that can be used from anywhere in the world. This will allow to have integrated and timely information directly from the people who take care of the patients, as well as to keep updated the symptoms of the patients through a questionnaire uploaded to our server, which will be used for consultation. The operating system will be Windows Server 2016 and the database will be Mysql.
Currently, the server does not have an adequate installation, which puts the information at risk, since it is located in the electrical room. Therefore, it is necessary to consider a room built with safety standards and A-rated materials. This involves rewiring the 23 terminals and moving the Internet fiber optic and the existing connection to another friendly room. 

The development of the App is in charge of the psychology team. Inputs from other team members have been included regarding medical information about childhood cancer, treatments, complications, and medications side effects. 

1 full-time psychologist

1 part-time psychologist

2 nurse educators

2 oncologists

1 member of the Board of Directors

1 IT engineer. 

The idea behind the app began two years ago. The content regarding childhood cancer information has been developed by the team. In 2023, the oral medication adherence module was created and implemented among a small group of patients. 

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. 

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. 

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. 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.