Kenyan Belinda Adhiambo had to have her leg amputated when she was three years old after an accident and she still suffers from phantom limb pain.
But in her hometown of Kibera, a large impoverished neighborhood in Nairobi, paying for a doctor can mean missing a meal.
"Most of these insurance coverages do not cover individuals with disabilities due to our diversity. We have different needs," Adhiambo said.
Now Adhiambo sells her medical data to an app and in return gets to see a doctor.
She will receive a credit if she gives her details to the app, which the company behind it calls virtual 'Hippocratic coins'.
"The first time I tried the app was when I was having phantom limb pain, and I realized I could make an appointment and meet with a doctor. I had a conversation with a doctor and he told me how to deal with the phantom limb pain," Adhiambo said.
Adhiambo says she wouldn't be able to afford health care any other way.
"For me it is an achievement because sometimes when I want to go to a hospital for phantom limb pain, I need some money for consultations and so on. But with the app I ask Dr. Nick just asked if I can see him through the app, if I can see him within the available hours and he said: yes, you can just come and we will arrange that with the app owners".
The Snark Health app connects patients with doctors for diagnosis and treatment.
According to the startup, at least a third of the revenue from sales the company makes with user data goes to them, which they can use to pay for medical services on the app.
Snark Health says it's also a way for paying patients to make extra money.
If a paying customer agrees to have their health data collected and sold, they get an equal share of the money earned, so Snark, the doctor and the patient each earn a third of the money made from the sale of personal data.
"When a patient logs into our platform, he has two choices: participate in our data revenue program or simply pay via M-PESA [a mobile money transfer service based in Africa] via cash and proceed to book a consultation. If they choose to be part of our data revenue...all of our data will be re-anonymized, they will earn at least 33 percent or one-third of the revenue from our data sales," said Edwin Lubanga, Founder of Snark Health.
Lubanga believes the app can help more people get qualified medical attention without having to pay out-of-pocket.
"Over time, patients become more empowered. They get money in their wallets that they can pay for the next doctor's appointment. Whether they have insurance or not, they have the opportunity to have money in their wallets." which they can use to fund the next consultation," said Lubanga.
Snark encourages physicians to join the app in several ways. When they see patients like Adhiambo who can't pay, they get 10 percent of the money Snark Health makes from selling its anonymized data.
"I've been using this application for about two years now and it has really changed the way I practice. I can now put my available times on the application and the patient on the other end can see the time," said Nick Were, an orthopedic doctor .
"This has improved time management so much that the patient does not have to wait too long and now I can also earn via the app."
Snark Health says it uses blockchain technology to protect the user's identity so that the patient's sensitive health information cannot be traced back to him or her.
The anonymized data is sold to pharmaceutical or consumer health companies.
"Once it is anonymized, it means we will never know. The encounter is only between the doctor and the patient and we cannot trace back to which specific patient was diagnosed," Lubanga said.
"The algorithm only picks up the information we investigate. Let's say a data client is looking for specific things, like malaria patterns that are in a certain side of the country, then Snark can show all of these analytics."
A 'technical solution'
A blockchain is a distributed ledger or database that allows users to exchange data in a decentralized and secure manner.
Each block contains a data set and a timestamp and the data blocks are linked together.
These blocks are closed and the data can only be read or supplemented. Experts say such features make blockchain an ideal tool for the healthcare industry, which deals with large amounts of highly sensitive data.
"Blockchain is particularly suited to enabling the creation of personalized ledgers of medical data that patients can control, and the trend is leveraging that technical feature of blockchain to provide patient-centric approaches where patients decide who has access to the data, among what circumstances. , for what purposes and at what price," Immaculate Motsi-Omoijiade, the Responsible AI Lead at Charles Sturt University, told Euronews Health.
Experts say blockchain technology could be a "technical solution" to ensure the security of patient data.
"Health data is always very sensitive data. But at the same time we need to exchange these enormous amounts of data between the different actors within healthcare," Giovanni Rubeis, head of the Department of Biomedical and Public Health Ethics at the Karl Landsteiner University of Health Sciences, told Euronews Health.
"Blockchain technologies could really be a technical solution to overcome this trade-off because of their properties," Rubeis added.
He says he was impressed with Snark Health and its business model.
"Paying for services with our data is something we do in our daily lives. For example, if you use a service like Google Maps or similar services, they are free, but you pay with your metadata, with your user data when you use them," Rubeis said.
"I think it could be used to optimize certain healthcare services, for example to speed up data exchange processes, which is a huge problem facing most European healthcare systems," he added.
'No panacea'
Blockchain technology alone is not a "magic bullet" and experts say systematic and regulatory interventions must take ethics into account.
"There are many legal uncertainties surrounding blockchain, and these need to be clarified by defining their legal status and recognizing them as a factor for data security and privacy protection," Rubeis said.
"An important aspect in this regard would be to define standards for compatibility of blockchain technologies with existing regulations such as the GDPR in the European Union for example, and HIPAA in the US," he added.
"Blockchain technology can be secure because it is immutable, tamper-proof and pseudonymous, and then there is the cryptographic authentication," says Motsi-Omoijiade.
"However, it is not foolproof and it is specific to the type of blockchain," she added.
The app also has a responsibility to be clear about what it can and cannot do, Motsi-Omoijiade said.
Because patient data is the "lifeblood of the industry," she would be curious to know how much the data is being sold for, given that the global pharmaceutical industry's revenues total almost $1.5 trillion (€1.39 trillion).
According to Snark, the app has attracted more than 300 doctors and 4,000 patients to date.
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