How Social Entrepreneurs Use Tech to Enable Changemaker Health

Changemaker Health Series — Essay №4

By Ben Losman

Editing and contributions by Megan Strickland, Sarah Jefferson and Yeleka Barrett

As a pharmaceutical executive, Stephen Friend was dismayed by the impact that the competition within drug development had on patients. After all, delayed cures can cost lives. He realized a more democratic and collaborative approach to research — one in which biomedical information is collectively shared, rather than aggressively hoarded — could minimize redundant research, accelerate breakthroughs and maximize the return on public and corporate investment.

Inspired by open-sourced models like Wikipedia, GitHub and Creative Commons, Friend decided to create an open space where researchers could come together, share critical resources and data and build upon each other’s work. In 2009, he founded the non-profit Sage Bionetworks, and launched an open-access repository that enables scientists to transform their data sets and models into collective resources.

Today, more than 2,500 biomedical researchers utilize Sage’s open-source platform to share research and collaborate toward developing cures every month.

Sage has run almost 40 DREAM challenges, through which thousands of researchers have come together to crowdsource solutions to fundamental questions in biology and medicine. And nearly 100,000 people have enrolled in Sage’s mobile clinical studies, with 75 percent of these participants donating their data to science.

When the media discusses healthcare technology, the spotlight is often on exciting innovations that are presented as being revolutionary — robotic surgeons, 3D printed organs and wearable technology, for example. And yet Sage has pioneered a revolution in drug development simply by leveraging an existing technology (open-source collaborative software) to transform an obstacle (isolationism and competition in biomedical research) into an asset (a culture of collaboration) for the greater good.

The Sage story demonstrates the power of technology in the hands of a social entrepreneur.

For social entrepreneurs like Friend, there are no silver bullets, and true innovation isn’t in the technology itself. Rather, the innovation — and the tremendous potential for social impact — is in the application of the technology toward making healthcare more accessible, affordable and compassionate.

In other words, social entrepreneurs use technology as a tool — not a means — for enabling changemaker health.

What are some specific strategies that social entrepreneurs use to harness the power of technology to create changemaker health?

Strategy 1: Place the user in the center of the design process

Technology is successful when it makes life better for the user. Designers of health tech solutions must, therefore, have an intimate understanding of target users and their needs, fears and dreams.

To ensure that a tech solution will genuinely improve life for the user, many social entrepreneurs engage their target users as co-designers. Bringing the user onboard in the design process can help instill a sense of responsibility, understanding and respect for beneficiaries that ripples throughout the entire organization.

Josh Nesbit, Medic Mobile | United States

In many rural communities around the world, the distance to the nearest hospital or clinic makes centralized healthcare unfeasible. These places often rely on local, trusted Community Health Workers (CHWs) to provide basic but essential services such as medication distribution and adherence. As liaisons between patients and the healthcare system, many CHWs spend countless hours traveling between the homes of patients to deliver care and then to the local clinic to file reports and restock their supplies of medicine. Long distances often delay care, and the consequences can be dire.

Medic Mobile

To overcome the challenges of isolation, social entrepreneur Josh Nesbit designed a digital communications system that connects CHWs to patients and medical facilities so that communication, data gathering and health system management can all happen instantaneously. Most CHWs don’t have smartphones, so Medic Mobile provides a comprehensive toolkit that enables them to use basic phones (also known as “brick phones”) to send and receive patient data to healthcare facilities through SMS (text messaging), even in places with intermittent connectivity. The toolkit is based on open-source software, supports multiple languages and works on even the most basic phones. Medic Mobile utilizes a human-centered design framework, in which the users brainstorm ideas, implement solutions and assess effectiveness — their needs and experiences drive the evolution of the system.

In one of Medic Mobile’s projects, the organization partnered with the Ministry of Health of Kenya and an NGO called Kilifi Kids to train over 450 CHWs in using cellphones to register women for prenatal care as soon as they became pregnant. The intervention more than doubled the number of facility-based births, ensuring that mothers and their babies receive the medical assistance they need for a healthy birth.

Junto Ohki, ShuR Group | Japan

The deaf community in Japan has long faced discrimination and marginalization, as is true in many countries around the world. Deaf people have historically been barred from many career paths, denied accessible healthcare services and restricted from attending university. And the government has only recently begun the process of codifying Japanese Sign Language (JSL). Unfortunately, the standardization of JSL has been slow and scattered, as deaf people have not had ownership of the process. Without standardization, there are no official sign-to-written dictionaries, which makes it difficult for many deaf people to learn to read and write.

Image Source: ShuR Group

To address these obstacles, Junto Ohki and his social enterprise ShuR Group have created a digital sign language dictionary called SLinto. However, SLinto’s potential for social impact does not come from the technology itself — rather, it comes from the people who use it. Inspired by Wikipedia, SLinto allows users to record video of sign language, search through entries, edit words, and collaborate. The dictionary is designed so that deaf people can shape its content, and in doing so, drive the evolution and standardization of JSL.

By placing the power in the hands of the user, ShuR has given the deaf community a platform for convening, collaborating, and creating ways to approach social integration on their own terms. SLinto is, therefore, a tool that helps deaf people harness their collective power and act from a place of agency and dignity. From a changemaker health perspective, a thriving and empowered deaf community is better equipped to protect the health and wellbeing of its members.

Strategy 2: Use tech to make health services more accessible

Technology has tremendous potential for making healthcare more affordable and accessible. The right tech can reduce overhead costs, streamline operational systems and support scale. This enables social entrepreneurs to overcome major barriers — such as physical isolation, poverty and systemic marginalization — so that groups of people who have long lived outside of healthcare systems can have access to the high-quality care they deserve.

Hisham Kharma, Law 3andak Dam | Egypt

When Hisham Kharma’s uncle needed a blood transfusion, the family came up against Egypt’s dysfunctional blood banking system. In other healthcare systems, hospitals supply donated blood to patients who need it. In Egypt, however, it is up to patients to locate and secure the blood themselves. Patients can try their luck at one of 250 national blood banks, but because these banks are not centralized or connected to one another and have no automated internal tracking system, patients and families must often go from bank to bank in search of a matching blood source (with no guarantee of finding one). What’s more, they often need to pay bribes to get access to the blood they need. Patients who seek to circumvent this system often use the black market, which can be both unsafe and cost prohibitive. Either way, the experience opened Hisham’s eyes to the fact that, if someone you love needs blood and your family can’t “afford it,” your family member could easily die.

Law 3andak Dam

Hisham’s experience compelled him to launch a secure digital platform that matches people who need blood to potential donors. Law 3andak Dam — which translates literally to “If you have blood,” and colloquially to “If you have a conscience” — allows donors to register their blood types, locations and phone numbers to a centralized system. When someone is in need of blood, the individual requests a donation based on blood type, location and quantity. Once the request is uploaded, the system immediately sends out an alert to all donors with matching blood types and locations. The alert is also broadcast through social media and to the organization’s partnership network. When a matching donor is found, the patient and blood donor are connected and the two parties arrange the donation independently. This process is free and exponentially faster than the existing system.

In addition to its matching service, Law 3andak Dam aggregates information about blood donation initiatives from hospitals, blood banks and other social sector organizations. The platform also maps out geographic areas in which blood is either available or needed. By harnessing the power of the Internet and social media, establishing an expansive cross-sector network of partners, and appealing to the public’s conscience, Hisham has created a thriving centralized network that benefits thousands of people where there was none before.

Sameer Sawarkar, Neurosynaptic Communications | India

Although 70 percent of the population in India lives in rural villages, 80 percent of the nation’s doctors are located in urban areas, as are 60 percent of the hospitals. And the doctors that do operate in rural areas have high rates of absenteeism because support and transparency can be non-existent. As a result, nearly 700 million people live without reliable access to quality healthcare.

Neurosynaptic Communications

Social entrepreneur Sameer Sawarkar launched Neurosynaptic Communications to make care accessible to rural populations through telemedicine. The company produces a kit customized for low resource settings that includes diagnostic instruments and integrated software. The kit is installed at a local health kiosk. Staffed by Mobile Health Workers (MHWs), one kiosk typically serves 10 villages. When a patient visits the kiosk, she is connected to an urban doctor through a video call. Working with the MHW to run diagnostic tests, the doctor can virtually assess the patient’s vital signs. The doctor then writes any necessary prescriptions or referrals, which are electronically sent to the kiosk and filled immediately.

By using telemedicine to bridge the gap between rural populations and urban doctors, Neurosynaptic has provided critical care to almost 40 million people. Sawarkar hopes to soon expand coverage to reach 250 million people.

Strategy 3: Build community, access and resilience for marginalized populations through digital connections

For many marginalized individuals and groups, technology provides the infrastructure for fostering meaningful human connection and self-expression that might not otherwise be possible. In particular, digital communications can provide a safe haven for people who experience systemic oppression, enabling them to find like-minded communities and build support networks.

Social entrepreneurs seek to create such havens and use them as foundations for nurturing resiliency in vulnerable communities, especially to create strong mental health services.

Laurindo Garcia, B-Change | Philippines

Thirteen years ago, Laurindo Garcia went in for a routine medical checkup as part of his application for a work visa to Singapore. During this visit, Garcia discovered that he was HIV positive. As a gay man in the Philippines, Garcia’s sexuality already made him a target for discrimination. Now, a doctor was telling him that “I would be fired, my visa application would be denied and I would probably be deported.” These were grave consequences to both his health and his livelihood, and Garcia was left to navigate them on his own.

Many HIV positive and LGBTQ+ people in the Philippines — as well as throughout the rest of Southeast Asia and around the globe — are disconnected from systems of support. The impact of the resulting isolation, fear and frustration on physical and mental health can be devastating. This fact, plus his own experience, compelled Garcia to harness the power of social media, mobile apps and targeted data analysis to connect these communities to the resources and support they need to survive and thrive.

Laurindo Garcia and his partner

Garcia’s social enterprise, B-Change Group, has launched two apps tailored to the needs of HIV positive and LGBTQ+ people in cities across Southeast Asia: BE and PLUS. Both apps provide users with a peer-driven Q&A system, a central collection of stories and informational resources and a directory that combines geospatial mapping (GSM) and a user review system so that users can connect to critical social services (health, social support, legal aid, education and employment) and community groups in their geographic areas. Multilingual community managers answer questions in real time and make referrals to services. These platforms are designed to be scaled and adapted into different cultural and geographic contexts by organizations on the ground. Elements of Garcia’s work have already been replicated in the United States, Europe, and the Middle East and North Africa.

Inge Missmahl, Ipso Cultural Context/ Ipso e-Care | Germany

In 2015, the number of refugees in the world totaled 65.3 million — the highest figure ever recorded. This means that one out of every 113 people on earth had been forcibly displaced from their homes by conflict and persecution. Under the psychological stress and trauma of migration, the incidence of mild, moderate and severe mental health issues jumps significantly. Access to mental healthcare is a critical need for refugee populations.

Cultural Dialogue — Ipso Cultural Context

Through her organization Ipso Cultural Context, social entrepreneur Inge Missmahl is creating an innovative system in which refugees are both providers and recipients of mental healthcare. Ipso trains local counselors to deliver customized psychosocial counseling through both face-to-face and online video consultations. Given the stigma around mental health issues, the video consultations have proven to be an especially powerful tool — by creating virtual safe spaces that people can access from the privacy of their own homes, Ipso e-Care has been able to reach more than 110,000 people.

Now Ipso is poised to use its e-care system to deliver “psychosocial counseling [by] refugees, for refugees.” The organization is training psychologists, therapists and social workers who themselves have experienced forced migration to provide virtual psychosocial counseling to other refugees. Their personal knowledge of the stresses and traumas of migration, as well as their fluency in their future clients’ mother tongues, will provide these counselors with a foundation for connecting to clients on a deep and intimate level. And the fact that consultations will take place through video conferencing technology will enable counselors to create spaces of mental safety with their clients, no matter where they are in the world — which is critical given the precarious living situations many refugees occupy.

Tech enables connection

Treating technology as a stand alone solution to social problems limits its potential for systemic impact.

Tech can’t solve problems alone, but people effectively using technology can.

This is why social entrepreneurs treat tech not as a solution to be dropped into the hands of individuals or institutions, but as an enabler of human connection and a tool for scaling and streamlining systems. By using it to build vital, dynamic bridges between people and the support, care, human connections and resources they need to thrive, social entrepreneurs make technology a tool for changemaker health.

Ashoka is a global network of leading social entrepreneurs — individuals who tackle society’s complex social problems with scalable, innovative solutions. Launched in 2010 by Ashoka and the global healthcare company Boehringer Ingelheim, the Making More Health (MMH) initiative identifies, supports and scales innovative, entrepreneurial solutions to global health challenges. To date, the MMH initiative has identified and supported 80 social entrepreneurs in the field of healthcare from across 47 countries. This article series synthesizes the emerging patterns and insights of the MMH network, as well as other social entrepreneurs working in healthcare, in order to explore the theme of changemaker health.

Full list of articles in the series:

Case Study 1: Patients Know Best: A Changemaker Health Case Study

Article 1: The Shifting Role of Patients in Today’s Healthcare System: Introducing Changemaker Health

Article 2: The Role of Co-Creation in Changemaker Health

Article 3: How Community-Led Caregiving Is Transforming Healthcare