Kenyan resident Belinda Adhiambo had to have her leg amputated when she was three years old after an accident and she still suffers from phantom pains.
But in her hometown Kibera, a large impoverished neighbourhood in Nairobi, paying a doctor could mean missing a meal.
"Most of these insurance covers do not cover persons with disabilities because of our diversity. We have different needs,” said Adhiambo.
Now Adhiambo sells her medical data to an app and in return gets to see a doctor.
She gets a credit when she gives her data to the app, which the company behind it calls virtual "Hippocratic coins".
“The first time I tried the app was when I had some phantom pains, and I realised that I was able to book an appointment and meet a doctor. I had a conversation with a doctor and he guided me on how to go on the phantom 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 pain, I need to have some money for consultation and everything. But with the app, I only ask Dr Nick if I can see him through the app, if I can see him in his available hours and he was like yeah you can just come and we will sort that out with the app owners".
The app Snark Health connects patients with doctors for diagnosis and treatment.
According to the startup, at least a third of the earnings from sales the company makes with users’ 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 fee-paying patients to make extra money.
If a paying customer agrees to the collection and sale of their health data they will get an equal share of the cash earned, so Snark, the doctor and the patient each earn a third of the money made through the sale of personal data.
"When a patient logs onto our platform, he has two choices either to take part in our data monetisation programme 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 monetisation…again all our data is anonymised, they will earn at least 33 per cent or a third of the earnings from our data sale," said Edwin Lubanga, Snark Health’s founder.
Lubanga believes the app can help more people get qualified medical attention without having to pay for it in cash.
"That is how over time patients are empowered. They are getting money in their wallet which they can afford to pay for the next doctor's appointment. Whether they have insurance or they do not have insurance, they have an opportunity to have money in their wallet which they can use to afford the next consultation," said Lubanga.
Snark incentivises doctors in various ways to join the app. When they see patients like Adhiambo who cannot pay, they receive 10 per cent of the cash Snark Health earns by selling her anonymised data.
"I have been using this application for about two years, and it has really changed the way I practice. I am now able to put my available times on the application and the patient on the other side is able to see the time," said Nick Were, an orthopaedic doctor.
"This has improved the time management such that the patient does not have to wait for too long and now I am also able to earn through the app".
Snark Health says it uses blockchain technology to protect user identity so the patient's sensitive health information can't be traced back to them.
The anonymised data is sold to pharmaceutical or consumer health companies.
"Once it's anonymised that means that we will never know, the encounter is just between the doctor and the patient, and we cannot trace back to which particular patient was diagnosed with what,” Lubanga said.
“The algorithm is only picking out the information we are researching. So let's say a data customer is searching for specific things like malaria patterns happening in a certain side of the country, then Snark is able to show all these analytics".
A ‘technical fix’
A blockchain is a distributed ledger or database that enables users to exchange data in a decentralised and safe manner.
Each block contains a data set and a timestamp and the data blocks are linked to each other.
These blocks are closed and the data can only be read or added to. Experts say such characteristics make blockchain an ideal tool for the healthcare sector, which deals with large amounts of highly sensitive data.
“Blockchain is particularly suitable for allowing for the creation of personalised ledgers of medical data, which patients can control, and the trend leverages that technical feature of blockchain to provide patient-centric approaches where patients decide who has access to the data, under what conditions, 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 can be a “technical fix” for ensuring the security of patient data.
“Health data is always very sensitive data. But at the same time, we need to exchange these huge amounts of data between the different actors within health care,” Giovanni Rubeis, Head of the Division of Biomedical and Public Health Ethics at Karl Landsteiner University of Health Sciences, told Euronews Health.
“Blockchain technologies could really be a technical fix for overcoming this trade-off due to their features,” Rubeis added.
He says he was impressed with Snark Health and its business model.
“Paying for services with our data is something that we do in our everyday life. If you use a service like Google Maps or similar services, for example, these are free, but you pay with your metadata, with your user data when you use them,” Rubeis added.
“I think it could be used to optimise certain health care services, for example, to speed up processes of exchanging data, which is a huge problem that most European health care systems are faced with,” he added.
‘Not a magic bullet’
Blockchain technology alone is not a “magic bullet” and experts say systematic and regulatory interventions should take ethics into consideration.
“There are a lot of legal uncertainties around blockchain, and these should be clarified by defining their legal status and acknowledging them as an enabler of data security and privacy protection,” said Rubeis.
“One important aspect in this regard would be to define standards of compatibility for blockchain technologies with existing regulations like the GDPR in the European Union, for example, and the HIPAA in the US,” he added.
"Blockchain technology can be secure because it's immutable, it's tamper-proof and pseudonymous, and then there's the cryptographic authentication," said Motsi-Omoijiade.
"However, it's 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 can’t do, Motsi-Omoijiade said.
As patient data is the “lifeblood of the industry,” she would be curious to know how much the data is sold for as the global pharmaceutical industry’s revenues total nearly $1.5 trillion (€1.39 trillion).
According to Snark, the app has so far attracted more than 300 doctors and 4,000 patients.
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