ScreamIT

Rare diseases (RD) pose serious challenges in terms of both diagnosis and treatment in Kenya particularly for children below 5 years of age. Despite the lack of a formal database or Rare Disease registry in Kenya, several cases of these diseases have been reported. The challenges posed by Rare Diseases have evolved in recent times in Kenya but lacks clear diagnosis and management, awareness and patient empowerment, no clear Legislation or policy that seeks to set up incentives for drugs invented or re-purposed for the treatment of rare diseases. Poor Families have limited access to medical knowledge resulting in delayed diagnosis, early treatment and interventions. There are instances where Children are misdiagnosed, enrolled to unnecessary treatment and surgeries with care givers facing financial hardships. This has contributed to high mortality and morbidity amongst young children aged below 5 years with rare diseases. Children with are diseases and their Caregivers face retrogressive social cultural and religious beliefs and many have been exorcised, socially excluded labeled as unclean. Stigma and discrimination for them is high and it’s common to find children with rare diseases being socially, economically and culturally vulnerable and isolated both at home and in school. This a double tragedy for instead of their bodies fighting the disease they are many times left to fight for themselves. In some instances caregivers , siblings and communities  have abandoned the young sickly children in the streets or children homes where isolation and labelling is on another level.

Some of the most prevalent rare diseases in Kenya include childhood cancers, spinal muscular Atrophy, vitiligo skin disease and severe combined immunodeficiency (SCID) which is many times confused for HIV. Due to lack of data and a centralized system , a clear policy on rare diseases in Kenya the situation may present a low prevalence rates but if good documentation was to be done the numbers would skyrocket.  The enormous gap of creating awareness on rare diseases amongst children during the formative years is so glaring in public and health space particularly public hospitals in Kenya.  There aren't many audio visual materials that are in local dialects and targeting remote, poor communities who grapple with illiteracy and information access.

Rare Diseases Are Not Rare! The challenge in Kenya has been lack of new tools and ways of raising awareness 

Through a community centered design approach involving children with rare diseases , their caregivers , teens and adults living with rare diseases and stakeholders living within their community we have created a solution named ScreamIT Chabot and platform an AI-powered conversational solution that is enabling help caregivers of children with rare diseases, community health volunteers and healthcare providers easily connect with each other. The platform strengthens health systems for accountability , safety and quality for improved patient outcomes in rare disease care and support system.

 Through machine learning process and an integrated algorithm as data is updated by both Community health volunteers and Health providers it automatically generates an alert and advice which caregiver or child needs urgent care. The Community health volunteer’s responsible for that caregiver gets and alert for follow up with the specific caregivers. The caregiver is also alerted on the new development on real time through the Chabot response or an SMS.

The Chabot is playing a critical role in making relevant healthcare information on rare diseases accessible to caregivers and stakeholders on real time thus increasing delivery of physical and virtual emotional support to children with rare diseases and their caregivers. It links them to a community support where they talk to each other getting the much needed peer to peer emotional support , express their frustration, grieve in an anonymous way, and say difficult things without being judged by anyone. Queries coming in on ScreamIT Chabot help in creating more responses in real time and linking caregivers to health care providers in Kenya. From the Chabot caregivers and stakeholders are invited to join a Community of care (COC). Community health volunteers (CHVs)  with 30% consisting of caregivers with children with rare diseases , Health workers trained in advocacy and well informed on Rare Diseases provide the prerequisite support within their community.

The platform is creating a Family space where children with rare diseases and their caregivers , teens and adults living with rare diseases will be able to voluntarily join and document their journey, co-create localized interventions for adoption by individual applications, families and communities at large. With localization of community of care support group’s caregivers are able to access continuous and coordinated psycho-social support in critical situations, quick turnaround linkages with Health service provider, CSOs, educational institutions and religious institutions for further assistance. Peer support with another or other caregivers and children support groups are enhanced.as they are able to monitor each other on how they are navigating the current stigma, discrimination, emotional health and building post peer support systems.

Community health volunteer’s act as the frontline’s Trainers, offering psychosocial support and referrals for medical care to identified Health service providers. They are also contributing on the improvement of ScreamIT Chabot, impact monitoring and data collection within their communities. Through a community centered design approach the caregivers and children are playing a critical role in the current research and development of the Chabot and community of care refinement process. 

In future children with rare diseases and their caregivers will have an opportunity to document their journey; co-create localized interventions for adoption by individual, families and communities at large. More community of care virtual support groups and advocacy groups will evolve. Professional counselors, Medical personnel and CHVs will be able to be link and offer trauma counseling, psycho-social support, answers queries and referrals on real time. Caregivers will also be linked with health facilities or organizations within their locality for support in real time. The Chabot through co-creation with communities of care will be accessible and available in many local dialects in Kenya to create more awareness and sensitization.

The Chabot code is being further developed to be accessible and available in many local dialects in Kenya, accessible to other community members who will be sensitized to access it to learn more on rare diseases and how they can be social pillars for the caregivers and their children.

ScreamIT Chatbot and monitoring system is a first towards addressing this and will impact as follows 

1. Parents and caregivers with children with childhood cancers , spinal muscular Atrophy , vitiligo skin disease and severe combined immunodeficiency (SCID)  are impacted as follows
   1. Enabling them access information on signs of rare diseases by acting as an early warning system imploring them to seek medical assistance early enough which prolongers’ children lives and reducing health costs when the diseases reach chronic stages and is reversible.
   2. Empowers them to play their role in community advocacy and influencing policy in regards to rare diseases through localized community of care groups and in government decision making process.
   3. Creating Peer to peer support mechanism with other caregivers for coping mechanism , building resilience , growing networks  best practice sharing and pinpointing retrogressive policies and beliefs which hinder an enabling ecosystem for children  with  rare diseases  thriving in Kenya.
   4. Well to do caregivers will be able to support those who are resource deprived and vulnerable.
2. Children with Rare diseases, their siblings and peers will be able to learn more on why they may look different. This will result in embracing, peer to peer support and children with resilience towards stigma and discrimination.
3. Community of care champions who are caregivers and adults living with rare diseases. The champions of rare diseases adopts the ScreamIT chatbot as opportunity to create, and increase, awareness in the general public, and with policymakers, around the need for research, increasing equity and raising the patient voice .
4. Community Health Volunteers in rural and urban informal settlements communities where care and treatment is limited. Most of these families with children with rare diseases income is below $1 barely serving and have no access to information and treatment. Communities will receive through CHVs risk reduction communication messages, community engagement strategies which will strengthen localized interventions. This will address needs of caregivers and children with rare diseases and establish and enhance communities of care support systems through communities own initiatives.
5. CSOs, National and County governments will have access to a real time data base and a map of Rare Diseases prevalence, CHVs documenting rare diseases, caregivers and children affected. This will inform policy, health resource allocation and timely interventions.

The project is an MVP (Minimum viable product) being developed and piloted in four communities involving  children with rare diseases and 120 caregivers  , general community members  , 4 Community health volunteers, volunteer IT and data analyst's. The project is able to mobilize quickly and build distributed teams of community champions and healthcare workers, creatively pushing successful project implementation despite staff resource constraints. The community and caregivers' ownership of the project and feedback on what is working and what can be improved in real time has created trust and belief in the process.

The MVP (Minimum viable product) prototype process has an advisory team made up of caregivers, community health volunteers, health professionals working in the area and an IT team that spends time voluntarily in the community.

The key things the team is addressing through Community centered design approach is

1. Missing and disjointed data on common Rare diseases in Kenya across communities they live in and addressing the gap in knowledge, trust , and access to psychosocial and health intervention's.
2. How does community-led, personalized support further encourage caregivers, children and communities join a health and psychosocial program that increases their resilience and coping mechanism.
3. Continuous  working and testing assumptions by verifying them  with the target caregivers , children , CHVs , HSP and stakeholders on how a community-led , personalized support further encourages embracing and supporting caregiver with and children with rare diseases .

The current lead team is as follows

Keneth Ndua Mitambo (https://www.linkedin.com/in/ke... )  is a seasoned  product and project design specialist through creating MVP (Minimum viable product). He is the lead innovator for this MVP (Minimum viable product) working closely with all stakeholders in project design. He holds an MBA in Global Business and Sustainability Social Entrepreneurship Track and a Masters of Arts in Community Care HIV and AIDS amongst other professional training in Human centered Design, research and social transformation. He is a seasoned Program manager in water, health, advocacy, energy access and livelihoods in Urban and Rural areas. Keneth is a social entrepreneur, consultants who has continuously enabled Non Profit and for Profit entrench and revamp their products, projects, pitches that have resulted in them in winning accolade’s globally.

Keneth has won numerous awards and recognition globally in regards to designing simple health related products through people centered design process and services as follows

1. TOP IDEA - Empowering caregivers in immunization innovation challenge powered by Openideo and Bill and Melinda Gates foundation vaccine-innovation/top ideas 2019.
2. Finalist Openideo and Infuse –urban immunization challenge in 2019
3. Winner and Top Idea at the Science and Technology Summit 2018 at the United Nations Headquarters New York for his energy and clean water access project targeting children.· Jun 2018
4. 1st Runners up Renewable Energy Awards (Clean cooking Technologies) Issued by Renewable Energy Consortium Kenya · Dec 2018
5. Winner innovation pitch Issued by NEPAD , Gates Foundation, Grand challenges Canada, Africa Academy of science · Mar 2016
6. Star in Global Health Star in Global Health research grant awardee Issued by Grand Challenge’s Canada · Apr 2014 for a project titled “Reduce Incidences of child mortality due to water-borne diseases and increase access to clean water.

Monica Sena Kundu (https://www.linkedin.com/in/monica-sena-kundu-4b5a411a/).   Volunteer Tech Adviser’s tech enthusiast enabling organizations and users adapt to technology. She advises on Chabot systems design so that its user friendly and enables the users get the best value out of it. She is experienced in building successful user centric teams supporting them to grow, learn and add value to the organization while building skills that align with their career goals. She has been at the backbone in designing the backend platform and linking for the ScreamIT Chabot.

Dr Mary Mwandisha (https://www.linkedin.com/in/dr). Medical Doctor with interest in child maternal health. She has advised on the project design, curating caregivers training's and recruiting volunteer doctors who have continue offering valuable lessons to the caregivers. She is in-charge of the health docket.

Emmanuel Njihia Ndua (17 years old) . Tech enthusiast and social innovator who have been critical in bringing the new way of thinking and design solutions that speak to the young generation. 

The Solve grant will enable us reach our short-term budget targets and introduce us to partners who could strengthen our long-term financial outlook, either through direct funding, coaching or connections with other funders and government partners. Funding from this challenge will enable us learn and to address the following.

1. Complete the MVP (Minimum viable product) process and subsequent expanded pilot with a winder pilot group and communities to refine the Chabot, monitoring platform, acquire a USSD license to enable   information sharing and quick turnaround for requests.
2. Translate and enable of writing the ScreamIT chat bot in local languages in Kenya.
3. Enhance our skills in health design and innovating for community transformation through peer learning and support from experts in the field. Our team will gain new knowledge and network with peers resulting in improved project delivery and impact measurement.
4. The team will learn more and have enhanced skills which will be cascaded to our CHVs, Community Care group’s leaderships on running sustainable community led initiatives, enhancing collaboration with health service providers serving the ultra-poor and vulnerable communities.
5. Improve the dashboard to enable stakeholder log into specific dashboards and enable them get prerequisite information that will enable them make informed choice. To do this, we need more technical thinkers, data analysts and to train more of our community champions (children and caregivers) in designing community based programs that are embedded in our system.
6. The Solve community experts will equip us with more skills in technology, data security, monitoring and evaluation and scaling.  Solve and its MIT-backed network will offer support and advise on how we can change the way digital tools for community health are built and deployed by creating and fostering a global network of independent, technically-savvy teams, collectively building on a common open-source platform. 

Creating awareness of rare diseases in Kenya is only the first milestone. There is a dire need for establishing a Rare Disease database of patients. This will be helpful in conducting research, and in improving the diagnosis rate of these rare diseases. Currently, the lack of scientific and medical knowledge of these diseases results in misdiagnosis like the case of Johnathan Okoth whose Guillain–Barré Syndrome (GBS), a condition in which the immune system attacks the nerves, took six years to be diagnosed. He is just one of many Kenyans affected by rare diseases who suffer delayed treatment or lack treatment entirely , information and support systems . ScreamIT as a solution is seeking to address this gap as a first in the region.

The innovation as a minimum viable product (MVP) allows future improvement's to fit to emerging needs and development in the AI space. It applies the principles of child and community-centered design, as opposed to other translation-focused designs. It addresses a critical gap in information sharing in a very simple way that’s user friendly. An early warning system that enables caregivers be linked with health facilities for early interventions enabling children with rare diseases get medical assistance  thus surviving the critical period which is the first years of life.

The Chabot adapts to android and GSM phones, local languages and dialects, has  ease of use by communities and stakeholders in addressing a common challenge that's. It enables children with rare diseases and their caregivers be heard, raise awareness of the challenges of living with a rare disease. It empowers them to be assertive, advocate for their rights and participation in policy change, and know what information to seek for from physician and creating collaborations with schools and other stakeholder.

Teens and adults living with rare diseases are recruited as champions and advocates and offer a support system to the community of care process advocating for inclusion and policy change.

The community led and owned process is raising awareness of rare diseases, contributing to design the improvement of early diagnosis, documenting data that will encourage policymakers to increase access to services and fund research into rare diseases, as well as reduce the feelings of isolation or the discrimination faced by patients. Address gaps on scientific knowledge and quality of information on rare diseases, delays in diagnosis and difficulties in accessing treatment and care.  Communities and caregivers' have ownership of the project and their feedback has been and will continue being critical in refining the Chabot on real time which creates trust and belief in the process.

It allows communities to adapt and co-create in their local languages and dialects increasing the understanding of caregivers and their children and other stakeholders.

Year 1 impact goals

1. Creation of a credible a database and social map by registering and enrolling 1000 caregivers and children in the program 
2. 50 CHVs and 20 Health service providers will be able to plan in advance responses with actual projections. 
3. 50 rare disease champions trained and recruited with 20 being males designing localized interventions through a community centered design process. Of these half will be teens and adults living with rare diseases.

Year 5 Impact Goals

1. Reach 100,000 caregivers and children with rare disease through a digitization process and community of care process.
2. ScreamIT project will for the first time in Kenya create a social map of children with rare diseases and their caregivers, health facilities offering services to them in real time enabling immediate attention by Government and other stakeholders.
3. 500 CHVs and 200 health service providers adequately be informed and equipped with knowledge in supporting children with rare disease and their caregivers.
4. Well informed and equipped 500 rare disease champions in well to do and resource deprived settings with 200 being male with 70% being parents with children with rare diseases , teens and adults living with rare diseases .
5. Well informed and equipped 500 rare disease champions in well to do and resource deprived settings with 200 being male with 80% being parents with children with rare diseases.

Impact Outcomes year 1 to 5

1. Vibrant communities of care and health interventions in place( by year 1)
2. Teens and adults living with rare diseases offering mentorship , advocacy and awareness creation in their communities ( year 1 to 5 )
3. Caregivers and children able to identify and access friendly health facilities that have equipment’s, medicines and personnel well versed with rare diseases treatment, counseling and early interventions. ( year 1 to 5 )
4. Reliable data base and GIS social map in 30 % of Kenya communities ( By year 5)
5. Government and community owned health facilities providing education on rare diseases, early warning and effects for delayed diagnosis and treatment. ( by year 5)
6. Vibrant mentorship in communities and replication in other places in Kenya. ( by year 5)
7. Vibrant community based advocacy intervention’s leading to realization of rights of every child with rare disease Inclusion due to reduced stigma and discrimination towards those affected by rare diseases. ( by year 5)
8. Inclusion in policy change , adequate resource allocation.  ( by year 5)

The project will have two primary KPIs that will drive the final outcomes geared towards enhancing project’s impact: increased health education, early diagnosis and treatment of children with rare diseases thus reduced child mortality and morbidity within the first five years of a child life. An inclusive policy formulation and advocacy process that result in adequate resources allocation for rare diseases interventions. 

• Key primary KPIs are 
  1. No of caregivers, children, CHvs and HSP with knowledge on rare diseases amongst and adverse effects for lack of early interventions. 
  2. No of community of care groups, peer to peer groups established in communities that are inclusive, promotes advocacy and inclusive policy change towards rare diseases amongst children.

We will measure the intervention impact by looking at:

1. Difference between baseline survey at registration of children with rare diseases and their caregivers within households and subsequent monitoring on a real time monitoring system that will update monthly on child progress through visits.
2. Documentation of most significant observed in communities after trainings conducted by community health volunteers during household visits and community forums.
3. A 10% monthly enrollment increase of children with rare diseases and their caregivers in the project and actively participating in community of care and peer to peer programs.
4. No of caregivers and health service provider’s with knowledge in relation to the ScreamIT program and increase in registration and
5. 80% increase in access to treatment for children with rare diseases and psychosocial support for caregivers.
6. No of stakeholders and collaborators adopting the ScreamIT program thus making it sustainable and result in improved well-being of children with rare diseases.
7. 75 % of CHVs, Nurses recruited actively participating in the project. 
8. 80 % increase in rare disease  champions actively participating in  advocacy programs with men making 40% of the total,
9. No of teens and adults living with rare diseases forming advocacy groups in their communities 

Strategy

1. CHVs will recruit the caregivers of children with rare diseases, key in the data using availed low cost android phones. The collected data will include current household status in relation to livelihoods, number of children, properties and GPS. Progressively every six months a repeat of the same will be done for progressive comparison.
2. CHVs will enroll the children with rare diseases and their caregivers on the ScreamIT platform which will allocate a unique corresponding code for caregiver and child. They will also train the caregivers on how to fully make use of the Chabot. Every month CHVs they will visit households allocated to them, conduct educational sessions and referrals and record most significant changes.
3. Health service providers will record child treatment and progress using a record sheet on an android phone and syncing it to the ScreamIT monitoring platform. They will help in identification of new cases, health progress and needed health education for both current and future beneficiaries. The ScreamIT platform will also captures any other relevant data like child weight and other emergent health related issues. This data will inform the CHVs to offer relevant education and support during follow up and inform policy change and resource providers for future planning.
4. To measure the success of our ScreamIT and community of care project a 10 % increase in children with rare diseases and their caregivers enrollment on a monthly within a target areas will be interpreted to mean more lives saved, reduced stigma , discrimination , child morbidity and mortality. This is hoped will translate in improved household well-being since caregivers and siblings will have more time to attend to other chores with affected children falling sick less often. Households will have more income to spend on basic needs.
5. Formation of inclusive Community of care champions with 50 % being caregivers of children with rare diseases, teens and adults living with rare disease  and having a charter.

Our theory of change Involves health service providers financial and non-health support measures/services, stakeholders, implementing agencies , Gap Analysis – Identifying the gaps in the current support system for children with rare diseases , knowledge, feedback and non-financial support measures/services currently in place to encourage caregivers to seek support thus reduced labeling , stigma and discrimination in their communities. We hope to generate data that will influence policy change, resource allocation and enhanced interventions by government and other stakeholders in addressing rare diseases amongst children. Technology will be core in information sharing and it will be simple, user friendly in such a way that even the illiterate to have control over their child health reducing the burden of health costs due to rare diseases and children affected will fully development milestones. Through enrolling caregivers and children into the digitized rare diseases monitoring system, adopting the ScreamIT Chabot system will enable children with rare diseases and their caregivers, children, Community health volunteers and Health service provider’s better understanding the ecosystem of rare diseases interventions. This will broadly gradually evolve important support mechanism that will inform resource allocation, policies and advocacy intervention’s resulting in actualization of sustainable and transformative rare diseases intervention strategies facilitate innovative social innovation  that effectively support children with rare diseases  and their caregivers. Formation of inclusive Community of care champions with 50 % being caregivers of children with rare diseases, teens and adults living with rare disease  and having a charter.

The success of our program has been through the use of ScreamIT platform and Chabot powered with the function of synchronizing data with mobile phones and tablets. ScreamIT platform works through machine learning model for real time data upload and analysis, automatic classification as per regions, data extraction/capture of child health records, date of birth that enable planning of interventions for both medical and psychosocial support. It also enables referral to a nearby community of care and peer groups.

We are working on the SMS automation to CHVs and nurses with a Simple Mail Transfer Protocol (SMTP) being integrated into the system to enable conversion of emails to SMS for quick response. ScreamIT App is in the offing and it will be linked to our database system for it will make work easy for CHVs and Nurses.

The project is also powered through Salesforce for Interactive collection of data on real time. We are also integrated GPS and collaborating with Kenya government GIS under Kenya space Agency and Regional Center for mapping development in remote mapping of caregivers and children with are diseases and community of care / peer groups.

We are also currently working on a machine learning model for Automatic document classification & data extraction/capture of birth records which will help in scaling up the SMS reminder for caregivers to attend care groups, take children for health checks and expanding the Chabot capability to refer caregivers and children on real time according to the need.  For bulk SMS the project will collaborate with Safaricom and Airtel the main service providers.

The project does not discriminate caregivers or stakeholders by the ethnicity , social cultural or religious beliefs or their sexual orientation. We are inclusive and embrace diversity. Our management team has 70% women and recruits people of all diversity. 

Formation of inclusive Community of care champions with 50 % being caregivers of children with rare diseases, teens and adults living with rare disease  and having a charter.

B2B Government, NGOs who will act as agents and implement the project to help them track their project geared towards caregivers and children access to rare disease treatment and support. They will pay a subscription to access customized dashboard and training from STAMP Cleantech team

B2C. Subscription of SMS

1. Licensing NGOs and government institutions at a fee to access to customized dashboard and training from STAMP Cleantech team.  A fee will be charged for this
2. Charging for SMS services

The project is quite new and in pilot face through internal funding. The following is currently happening

1. Test results has generated interest with devolved units in Kenya who refined have expressed intentions of subscribing and adopting our system at a subscription
2. Collaboration with NGOs, National and local government to access customized dashboards which they will pay annual subscription.
3. Future training of NGOs, National and local government on our system for a fee.
4. We are working on getting impact investors to invest in the program and commercialism the process. The expansion will target government and NGOs sector in adopting and paying for the services.
5. Partnership with an NGO South Sudan at advanced stages for adoption of the innovative model at a fee and STAMP being subsequent consultant.