How Social Entrepreneurs Are Making Disease Detection and Diagnosis Accessible to All
Changemaker Health Series — Essay №5
By Ben Losman (editing and contributions by Megan Strickland, Sarah Jefferson, and Yeleka Barrett)
In France, 200,000 people are diagnosed with Alzheimer’s or other forms of dementia every year. Unfortunately, many of these cases are not detected until the disease is in its more advanced stages. Plus, there are only 2,000 neurologists in France, and the average wait time for an appointment is 24 months. Delayed diagnoses are especially common for people living in rural areas, where primary care physicians are often untrained in recognizing cognitive diseases, and for people who can’t complete standard diagnostic tests because they don’t read and write in French. The consequences of such delays can be devastating.
Social entrepreneur Bénédicte Défontaines has developed an approach that ensures timely detection. When someone shows indicators of a disorder, the doctor and patient connect to her organization, Réseau Mémoire Aloïs, for a comprehensive memory consultation. (Individuals can also request this consultation directly by calling a hotline.) Aloïs then connects the patient to a neuropsychologist operating outside of the hospital system, which reduces wait times dramatically. This assessment is available via telemedicine, as well as in multiple languages, making it accessible to rural and minority populations.
Based on the neuropsychologist’s assessment, Aloïs develops a customized network of care to meet the patient’s individual needs, connecting the patient to a diverse group of professionals ranging from speech therapists and personal care assistants to general practitioners and hospital administrators. By beginning comprehensive support at the early stages of the disorder, Aloïs helps patients and families maximize independence and quality of life. Not only does the network provide treatments for immediate cognitive challenges such as loss of memory and concentration, it also helps patients and families make important logistical decisions — for example, figuring out intensive care and estate planning — so that they feel prepared and confident for the future. To date, Alois has served more than 7,000 people and has saved the public healthcare system nearly 200 million euros per year.
The importance of diagnostics extends beyond the realm of neurological issues. In dealing with any health challenge, early detection is key; quality diagnostic systems help people manage their health on their own terms. Therefore, one of the fundamental goals of changemaker health is to make quality diagnostics physically and financially accessible to everyone.
Around the world, social entrepreneurs like Défontaines are making early detection accessible for all. Following are some of the strategies they employ.
Strategy 1: Maximize simplicity and efficiency
In many societies, large percentages of the population do not have access to diagnostic services. The barriers — which can include gaps in technology, inefficient delivery models and unaffordable cost structures — are often steepest for people living in rural communities, as well as poor, underprivileged, and/or disabled people. To reach these populations, social entrepreneurs develop solutions that are as simple, efficient and scalable as possible.
Jordi Marti, DBS (Dry Blood Spot) Screening | Spain
Most current disease detection systems rely heavily on intravenous puncture. In a hospital or clinic, a specialist uses a needle to draw blood, which must then be stored in climate controlled conditions so that it can be taken to a lab for analysis. However, some parts of the world lack access to the specialists, refrigerated transport chains, storage systems and technology needed to make blood-work analysis universally accessible.
These barriers to access may be complex, but Jordi Marti is leveraging a basic technology to overcome them. Dry blood spot (DBS) screening eliminates the need for the highly specialized processes required for intravenous blood extraction. The DBS method is decidedly low-tech, so much so that no nurse is required to administer it. A quick, small (and relatively painless) prick on the finger draws blood, which is then dabbed onto filter paper. Because it is a dry sample, the blood does not need to be refrigerated, making storage and transport to the lab considerably cheaper and easier. Thanks to this technology, blood work can be done outside of clinic and hospital settings, enabling massive screening events to take place in schools, communities and other spaces in which many people can be tested at once.
Javier Lozano, Clínicas del Azúcar | Mexico
More than 12 million people in Mexico have diabetes. The disease is the number one cause of death and one of the primary contributing factors in amputations, blindness, kidney failure and suicide nationwide. Because of an underfunded and under-resourced public health system, diabetes often goes undiagnosed in poor and middle-income communities.
To ensure that low- and middle-income earners can effectively detect and manage the disease, Javier Lozano built Clínicas del Azúcar (“Sugar Clinics”), which makes quality diagnostics and care accessible to people who cannot afford it. The clinics are one-stop shops located in accessible, well-serviced areas, such as shopping centers. Teams of nurses, psychologists, nutritionists, and other medical professionals leverage cutting-edge diagnostic and disease management software to provide comprehensive testing and treatment services. Rather than one-off payments (which can quickly add up and force patients to forego vital treatments), patients buy affordable annual service packages of US$200 versus the national average of US$1,000, bringing down costs and ensuring consistency of care. The clinics have been proven to reduce diabetes-related complications (such as blindness, amputations, and kidney failure) by 60 per cent.
Strategy 2: Leverage the skills and capacities of community members as assets in frontline diagnostic efforts
There simply aren’t enough trained specialists around the world to detect the spread of disease. There are, however, many community members whose skills and capabilities make them potential assets in front-line diagnostic efforts. By equipping these people with customized training and resources, social entrepreneurs are scaling detection systems, freeing up capacity for doctors and specialists, and creating meaningful opportunities for employment and community development.
Frank Hoffman, discovering hands | Germany
Breast cancer is the most common form of cancer for women around the world. In 2011, it claimed 508,000 lives. Early detection is critical, and while mammograms can be effective in detecting the disease, they are an expensive method that is not always offered to patients. This means that in Germany, for example, only 20% of breast cancer is detected in women under the age of 50 because this age group is not eligible for screenings.
Hoffman’s social business, discovering hands(R), trains and employs blind women to administer physical breast exams at doctors’ practices. Because many blind and visually impaired people have a heightened sense of touch, they are well equipped to find lumps in breast tissue. Indeed, preliminary research indicates that blind Medical Tactile Examiners (MTEs) detect 30 percent more tissue alterations — as well as lumps that are up to 50 percent smaller — than sighted doctors do. In the meantime, this approach opens up new professional possibilities for a group that experiences 70 percent unemployment in Germany, transforming their “disability” into a vital asset for public health.
Martin Guzman, Proyecto Lumen | Venezuela
In remote communities around Venezuela, children with poor eyesight often struggle to learn to read, which diminishes their chances of completing their education and finding gainful employment. While the government does distribute free eyeglasses through clinics scattered throughout the country, this system fails to provide preliminary eye exams, which are critical for detecting visual health issues. In fact, only 30 percent of children in Venezuela receive regular eye exams.
By enlisting school teachers in collaborative, integrated efforts aimed at increasing access to eye exams, Martin Guzman has implemented a low-cost training and support program that equips teachers to administer eye exams to students through his organization Proyecto Lumen. Depending on the community, hundreds of students may receive eye exams on the same day. Those who do not pass the exam are referred to visiting nurses and optometrists, who will then fit the students with specialized eyewear — which has been provided through in-kind donations from optometric labs. It is a collaborative, integrated effort, one that leverages the vital role that teachers play in the community. Since 2009, Lumen has trained nearly 150 teachers in remote communities and screened more than 2,000 students. Using a trusted and central human resource in the community — like school teachers — presents a scalable and flexible model that can be applied both to different geographic locations and to other health challenges.
Strategy 3: Find opportunity in unlikely places
To develop effective solutions to complex social challenges, social entrepreneurs engage in creative problem solving. For many, this means using traditional resources in novel and unique ways. Others find resources in places that most people wouldn’t even think to look.
Bart Weetjens, APOPO | Tanzania
The rate of tuberculosis (TB) in Tanzania is one of the world’s highest. Inadequate diagnostic methods and resources are serious obstacles to progress in the fight against the disease. Government diagnostic clinics are underfunded, understaffed and subject to power and water cuts. On top of these challenges, diagnosticians rely on microscopy, a time-intensive method that only detects 20 to 60 percent of positive samples. Because of this, only half of patients who visit clinics with active TB are diagnosed.
Enter the African giant-pouched rat, a rodent endemic to the region. Thanks to its hypersensitive olfactory system, these rats can smell active TB in sputum (saliva and muscus). So Bart Weetjens and his team at APOPO train rats to become diagnosticians. One “HeroRAT” can screen 100 sputum samples in 20 minutes — a feat that would take a lab technician four days in a public clinic. Since 2007, the HeroRATs have screened over 400,000 sputum samples and identified over 11,000 TB cases that microscopic diagnostics had missed. While much of the world finds them revolting, rats are highly trainable, able to work with multiple handlers, and cheap to source, feed, maintain and transport. Weetjens is in the early stages of research aimed at training HeroRATs to detect Alzheimer’s and some forms of cancer.
Miguel Luengo-Oroz, MalariaSpot | Spain
Malaria is one of the world’s most prevalent diseases. There were 212 million cases in 2015, resulting in nearly 430,000 deaths. Unfortunately, malaria is also the disease with the lowest rates of accurate diagnosis, a disturbing yet unsurprising fact given the diagnostic procedure. Specialists view blood samples through a microscope and manually count the number of parasites they see. It’s a tedious process — one sample may take a specialist 30 minutes to analyze — and there aren’t enough specialists in many malarial zones to handle the workload.
There are, however, 1.2 billion people around the world who play video games. Miguel Luengo-Oroz realized that, by gamifying elements of the malaria detection process, he could tap into this immense potential workforce. He developed MalariaSpot, an online game in which players are first quickly trained to identify parasites; then, they are shown a real blood sample and compete against the clock to click on the highest number of parasites possible. The more people click a specific area of a blood sample, the more confident the game’s Artificial Intelligence becomes in recognizing the area as a parasite. This crowdsourced, gamified approach to diagnostics provides free entertainment for users and critical workload support for health specialists. It’s an approach that can be applied to any disease that requires image recognition. In fact, Luengo-Oroz has already developed a similar game called TuberSpot, focused on crowdsourcing tuberculosis discovery.
In all areas of medicine, early-stage, affordable and accessible detection is key to achieving the best possible outcomes for patients and their families. By democratizing diagnostic processes, and bringing diagnosis out from traditional hospitals and clinics where it is traditionally housed, social entrepreneurs are embedding the principles of changemaker health into the foundations of our healthcare systems.
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