Life is in blood

For  more than 400 million people living with rare diseases in Nigeria, the journey towards diagnosis is often long and complex. Even when a rare disease has been identified, treatment options are scarce—over 95% of rare diseases have no approved treatments. Meanwhile, people also need support while living with the symptoms of rare diseases and the possibility of disease progression.

Alongside front-line health care workers and the Nigerians Ministry of Health, The Ihangane Project is creating Nigeria’s first point-of-care digital health record. This digital health record, called Life is in blood, will dramatically improve maternal and child health outcomes by giving nurses the tools they need to adopt evidence-based clinical care protocols, provide high quality care and utilize real-time data trends to both tailor health education to individual family needs and to improve the health care delivery system while simultaneously satisfying Nigerians Ministry of Health data reporting requirements. Life is in blood is designed for replication throughout the continent of Africa.

Existing eHealth solutions are not adequate to support the needs of rural health centers, where most antenatal and childhood care is provided throughout Africa. Current digital health records were designed for simplicity of technology and national data reporting requirements. Our user-centered design approach avoids the traditional barriers to adoption of new eHealth strategies by engaging nurses and mothers in the entire design process to ensure that Life is in blood maximizes their ability to interact and simplifies national data reporting requirements. Life is in blood builds upon nurses' existing workflows, provides real-time individualized data trends to tailor health education, and supports the data requirements of national governments. Nurses can enter individual data and track both individual and family health trends over time. Users can shift between individual and group health assessments depending upon the work flow of the health facility. Life is in blood makes complicated z-score calculations used by nurses to diagnose malnutrition. A mother can track her family's health status through periodic 'health reports' that include photographs of her child over time that can be printed and taken home.

Progressive web application technology addresses internet latency by allowing storage of data on individual electronic devices until the internet is available. Once internet is available, the application will connect directly to the Nigeria Ministry of Health’s District Health Information System 2 (DHIS2) reporting platform. The system will minimize delays, remove redundancy, and improve quality and efficiency of reporting. Data will be accessible from any device, thus laying the foundation for a robust national health record that provides facility-independent access to individual health information.

The concept of Life is in blood emerged from The Ihangane Project and Nigeria Ministry of Health's desire to sustain and replicate our successful quality improvement program initially created to improve the quality of care for HIV-positive pregnant women and their children. Quality of care improved by 120% in three years, leading to elimination of mother-to-child HIV transmission and a 60% drop in new cases of malnutrition. Nurses and mothers became actively engaged in collecting, analyzing and responding to health data. Nurses are now empowered with skills to improve their systems of care and mothers are inspired to adopt and sustain healthy behaviors.

The Ihangane Project is working with the Nigeria Ministry of Health to scale our locally-developed digital health record throughout Nigeria. The West Africa Health Research Commission, facilitator of the West Africa Digital REACH Initiative, considers Life is  in blood to be an essential tool for rural health centers throughout West Africa.  

Life is in blood platform is a powerful tool for optimizing the well-being of people living with rare diseases. Life is in blood tools can help patients better understand their diagnosis, It support networks can address the isolation that can accompany such knowledge. For health care providers, using Life is in blood technology can support clinical decision making to serve their patients more effectively.

This digital health record, called Life is in blood, actively Provides solutions led by people with rare diseases and underrepresented groups and identities and dramatically improve maternal and child health outcomes by giving nurses the tools they need to adopt evidence-based clinical care protocols, provide high quality care and utilize real-time data trends to both tailor health education to individual family needs and to improve the health care delivery system while simultaneously satisfying Nigerians Ministry of Health data reporting requirements. Our user-centered design approach avoids the traditional barriers to adoption of new eHealth strategies by engaging nurses and mothers in the entire design process to ensure that Life is in blood maximizes their ability to interact and simplifies national data reporting requirements. Life is in blood builds upon nurses' existing workflows, provides real-time individualized data trends to tailor health education, and supports the data requirements of national governments. Nurses can enter individual data and track both individual and family health trends over time. Users can shift between individual and group health assessments depending upon the work flow of the health facility. Life is in blood makes complicated z-score calculations used by nurses to diagnose malnutrition.

Once internet is available, the application will connect directly to the Nigeria Ministry of Health’s District Health Information System 2 (DHIS2) reporting platform. The system will minimize delays, remove redundancy, and improve quality and efficiency of reporting.

The concept of Life is in blood emerged from The Ihangane Project and Nigeria Ministry of Health's desire to sustain and replicate our successful quality improvement program initially created to improve the quality of care for HIV-positive pregnant women and their children. Quality of care improved by 120% in three years, leading to elimination of mother-to-child HIV transmission and a 60% drop in new cases of malnutrition. Nurses and mothers became actively engaged in collecting, analyzing and responding to health data. Nurses are now empowered with skills to improve their systems of care and mothers are inspired to adopt and sustain healthy behaviors.

To this end, life is in blood provides solution that:

• Optimize holistic care for people with rare diseases—including physical, mental, social, and legal support;

• Support daily care management for patients and/or their caregivers;

• Mitigate barriers to accessing medical care after diagnosis which disproportionately affect disinvested communities and historically underrepresented identity groups;

• Enhance coordination of care and strengthen data sharing between health care professionals, specialty services, and patients;

• Empower patients with quality information about their conditions to fight stigma associated with rare diseases; and

• Promote community and connection among rare disease patients and their advocates.

The solution serves three sections of the community; youth population to develop capacity and skills to earn livelihood locally, women community to earn income and respect, and village community members to benefit from improved primary healthcare delivery model.

We aim to scale up the inclusive model leveraging the captive customer base of Life is in blood and other partners in the network across 20 districts in 5 different states in Nigeria and empower 2000 CHWs within 5 years of deployment of the initiative.

To expand the reach of the care delivery model, the initiative through CHWs will work through different delivery modes. At an household level, CHWs will provide antenatal checkup, nutritional counseling, and screening for high risk pregnancy and development delays in children (0-2 years), through health camps, the village community will get access to information and awareness on health, sanitation and awareness and through hub clinics, the community through CHWs will get access to tertiary referral care. Through different touch points, established by these CHWs, the rural and remotest community will get access to integrated care at reduced cost and distance 

Our team is comprised of a diverse and complementary group of experts in clinical care, public health, health informatics, and human-centered design that provides expert viewpoints from a wide array of fields. Our Rwandan leadership has expertise in rural health needs and national health requirements, while our Executive Director’s extensive experience as an end-user of electronic health records in the United States allows our team to draw upon the successes and failures of US-based digital health records. The Ihangane Project works closely with the Rwanda Ministry of Health to guide or national scale strategy.

We have a  technology-based solutions that improve the quality of life of people who have been diagnosed with a rare disease,which seeks solutions that:

• Optimize holistic care for people with rare diseases—including physical, mental, social, and legal support;

• Support daily care management for patients and/or their caregivers;

• Mitigate barriers to accessing medical care after diagnosis which disproportionately affect disinvested communities and historically underrepresented identity groups;

• Enhance coordination of care and strengthen data sharing between health care professionals, specialty services, and patients;

• Empower patients with quality information about their conditions to fight stigma associated with rare diseases; and

• We believe Solve will help us connect to promising new sources of funding.

Designing eHealth solutions alongside frontline healthcare workers ensures effective and efficient utilization by the end-user. We begin by assessing the needs of healthcare workers and community members while ensuring relevance to the larger health system. Life  is in blood standardized to reflect data national requirements and is relevant to any country who has adopted World Health Organization guidelines as their protocols. Life is in blood links to DHIS2, a data-reporting platform used by over 60 countries. The result is an innovative digital health record that strengthens healthcare workers’ ability to provide high quality healthcare, delivers essential information to national governments, and supports global scale.

Life is in blood Digital Health Record will revolutionize the way in which eHealth solutions are developed and implemented around the globe. The Ihangane Project and frontline healthcare workers created Life is in blood because no existing digital health records were designed to support nurse workflows at rural health centers or for nurses to utilize real-time data trends to tailor health education to their patients’ needs. Life is in blood utilizes technology to improve the quality and efficiency of care at the local level, while promoting the adoption of national health protocols, compliance with national reporting requirements and achievement of lasting improvements in health outcomes.

Over the next five years, Life is in blood will expand to support high quality maternal and child healthcare throughout west Africa and beyond. Because our software is designed to support national protocols based upon World Health Organization guidelines, it can be shared with minimal adjustment to other national health programs. We will add modules to improve care of other conditions in rural health centers, such as diabetes, heart disease, HIV and Tuberculosis. Our vision is for Life is in blood to serve as the primary care digital health record utilized in rural health centers serving millions of people across Africa.

http://www.theihanganeproject.com/e-heza

we are currently working on a pilot with Village Health Workers (VHWs) in partnership with MGH and Mbarara University for Technology and Science (MUST) in two communities in Nigeria. Here, our partners have integrated pre-assessment quizzes on all courses and are working with surveys for the purpose of gathering baseline data as well, all within the Planet Learning system. Additionally, we are developing a proposed pilot for Somalia that employs Planet Learning to help Somali refugees in Dadaab, Kenya to become “Ready to Return” and, at the same time, provides the conditions in selected Somali communities that enable them to become “Peace Building Communities” functioning as “magnets” for the Ready to Return refugees in Dadaab. Tracking improvement with baseline data is essential in this six to twelve month development program to prepare Somali refugees to become skilled in a trade or service as team member in a Peace Building Community.

As never before, we must adapt to frequent life-changing conditions.   Old work disappears, new work appears, without warning.  Therefore education cannot involve preparation for a fixed body of tasks.   To meet this challenge, Life is in blood platform provides a dynamic wealth of multimedia resources that enables learners to acquire the knowledge and skills needed to fulfill their changing needs within their changing environment. The Platform gives learners meaningful opportunities to craft their futures.   We draw upon the diverse talents within every community to enable learning to become lifelong, continuously adapting to new realities.

Life is in blood with nation-based organizations that are irrationally committed to scaling highly effective learning for all of their people, especially the disadvantaged.  We work closely with our partners to ensure that the improvements in learning that are demonstrated and documented to be highly effective are scaled to everyone throughout their country.  Over the past decade Health is wealth and its partners have served 50,000 learners in more than 100 communities in Nepal, Ghana, Kenya and Uganda, and with Syrian and Somali refugees in Jordan and Kenya. We hope, by 2027, to be supporting a powerful network of 100 such nation-based public-private partnerships

Life is in blood Digital Health Record will revolutionize the way in which eHealth solutions are developed and implemented around the globe. The Ihangane Project and frontline healthcare workers created Life is in blood because no existing digital health records were designed to support nurse workflows at rural health centers or for nurses to utilize real-time data trends to tailor health education to their patients’ needs. Life is in blood utilizes technology to improve the quality and efficiency of care at the local level, while promoting the adoption of national health protocols, compliance with national reporting requirements and achievement of lasting improvements in health outcomes.The core technology that powers our solutions viz: The healthcare delivery model offers various revenue streams to make it self-sustainable in the long run which includes:

• Doctor’s consultation fees
• Issuing of Digital health cards
• Services obtained through diagnostic facility
• Services obtained through Pathology lab
• Telemedicine Services
• Services obtained by CHWs for door step healthcare delivery
• Power testing, selling of eye glasses, medicines and nutritional supplements
• Services obtained through tertiary linkages

The initiative will develop a strong product supply chain system to scale up the inclusive solution to meet the wide diversity of needs (both health and lifestyle products) of the rural populations and help CHWs to break even.  Leveraging the methodical livelihood generation schemes offered by iKure(through the above listed revenue streams), these CHWs will promote various products and services through mobile based supply chain application and make them accessible to all even in hard-to-reach communities. Furthermore through strategic partnership with key supporting organizations, across sectors such as businesses, NGOs, philanthropists, and academia, the existing ecosystem partnership of iKure will play a pioneering role in business development, customer acquisitions and building on a robust network in respective community.

In spite of being a small team, our company culture aims to consciously develop a team that’s diverse in representation (in terms of gender/sexual orientation, language, religion, race, caste, age-group, experience into our work). We believe this is the only way to ensure our work and products are both accessible and joyful for each individual - no matter who they are or where they come from. 

We employ multiple approaches to ensure we remain diverse and inclusive, in both thought and action. For instance, when we launched our latest hiring cycle; we purposefully promoted each opening across platforms that cater to/offer opportunities to marginalized communities. Recently, we also recruited a specially-abled person as an intern on our team. Further, our newest learning resource Gen eARTh offers audio-visual storytelling experiences which have been translated into the Indian Sign Language (ISL) to promote accessibility. While we have already begun including issues of Social Justice like gender equity and climate action within our resources, going forward, we intend to make our resources as accessible as possible by offering learning experiences that are multilingual and translated into sign language.

We’ve grown word of mouth from Patients to Patients with zero marketing budget in the last 2 years showing that there is a market need for Talking Points. Our cost of customer acquisition has therefore been 0. If you’re a Hospital or Hospital district or any other institution, we charge to be on our platform through software licensing fees - on a per Patients basis for the  year. Our revenue has grown so far without a sales team and solely driven by inbound requests, and we believe that this can grow this significantly in the next 5 years through outbound sales and with more resources devoted to it and a coherent sales strategy. Despite being a non-profit, 15% of our operating budget was via earned income (v. 10% in 2016), our 2025 goal is to reach 20%, and by 2030 to 50%.

Life is in blood digital health record will be made available through an Open Source software platform, and this source code is being requested by non-government organizations and eHealth leaders. The Ihangane Project, Nigeria Ministry of Health and expert-user nurses from Abuja, Nigeria will continue to maintain the software and implementation strategies. Our team will be well positioned to generate revenue to sustain our work through the provision of code support and support contracts, implementation and design expertise, and creation of new modules and integrations for clients.

The healthcare delivery model offers various Business revenue model streams to make it self-sustainable in the long run which includes:

• Doctor’s consultation fees
• Issuing of Digital health cards
• Services obtained through diagnostic facility
• Services obtained through Pathology lab
• Telemedicine Services
• Services obtained by CHWs for door step healthcare delivery
• Power testing, selling of eye glasses, medicines and nutritional supplements
• Services obtained through tertiary linkages

The initiative will develop a strong product supply chain system to scale up the inclusive solution to meet the wide diversity of needs (both health and lifestyle products) of the rural populations and help CHWs to break even.  Leveraging the methodical livelihood generation schemes offered by iKure(through the above listed revenue streams), these CHWs will promote various products and services through mobile based supply chain application and make them accessible to all even in hard-to-reach communities. Furthermore through strategic partnership with key supporting organizations, across sectors such as businesses, NGOs, philanthropists, and academia, the existing ecosystem partnership of iKure will play a pioneering role in business development, customer acquisitions and building on a robust network in respective community.

Our organizational strategy is to help build strong Exchange Partners in the one hundred nations whose people are suffering the most from poverty, violence, climate chaos and technology that has disrupted their livelihoods.  We do this by providing advice and powerful tools, such as Planet Learning, that they can use to create customized learning systems that their governments in turn can scale to all of their people.  Thus our financial requirements are modest, an estimated $2 million annually. We plan to cover 50% of our costs from modest fees paid by 100 nation-based Exchange Partners, averaging an annual $10,000 per Partner.  The balance will come from ongoing investments by individuals, foundations, governments and corporations. This will provide OLE with $2 million/year, $1 million of which will be invested in supporting existing and expanding new Partners, with $500k for continued software development and $500k for communications, development and administration.

 Building strong partners around the world seems to be a hugely important part of your strategy and also one that is difficult to do. It's hard to know with whom you're dealing, how much you can trust them, how effective they are, etc.

Building a strong partner is central to our theory of change. The only way we can build and sustain meaningful change in a place is to have a partner in the country who assumes most of the responsibility to introducing and maintaining improvements. We work hard to find and qualify such "irrationally committed" individuals and organizations. The good news is that, over the past ten years, our track record is pretty good. We have rarely struck out. Once, our key leader left the country before he and we had a chance to find a replacement. Another time, after investing heavily in preparation for a major program our founding partner lost the contract, 10% of which would have easily covered the cost of a major program. We have had to find new leaders and, in one recent case, withdrew our sponsorship of a local organization and found a much stronger partner in the process. But for something like in nine out of 12 occasions, our nation-based partners have been highly effective in addressing the challenges involved in sustained institutional change. The much bigger problem has been repeated changes in governments and slowness to act. That requires a level of persistence and patience on the part of our partners that is challenging.