Is it possible to swap one’s digital health records for currency or other value-added healthcare services? Where does one sell, who will buy, and at what price does he/she sell?
These are some fundamental questions as we democratise and commoditise out-of-pocket healthcare (OPP). With an ever-increasing population suffering from chronic diseases, recurring healthcare expenditures are a significant strain on household budgets and economies.
Is healthcare digitisation gone open a new Pandora’s box or a piggy bank for patients?
For instance, the AMRIT ecosystem is democratising cancer research by providing a global user base of 3.5 lakh individuals registered on their smartphone app CURIA. Any cancer research organisation interested in conducting clinical studies can use the app to connect with patients and incentivise them to share their real-world data with the utility token ‘AMRIT.’ The CURIA app’s ‘Cancer Twin’ function also allows users to find other users with similar illness kinds and converse anonymously with them.
Another company Dawaa Dost recently conducted a campaign on “World Diabetes Day” by providing Re 1 for a one-day medicine course in exchange for a patient prescription copy.
This data is an invaluable asset for companies doing research in lifesciences, but sharing of the data doesn’t provide any benefits to the patients.
However, in social media platforms, there are specific social media apps that curate one’s digital data and allows users to benefit (profit) from it. Mobile location data is a $250 billion industry and probably people contribute their valuable information through the mobile apps on their phones to social media platforms that sell it to the highest bidder. Tapestri (https://tapestri.io/) is one such free app that allows its users to get paid for mobile data. The data collected is anonymous (de-identified) without any Personally Identifiable Information (PII) before its traded.
Ultimately, it’s people’s data, and they should get paid for it.
Considering if the market size of mobile location data of individuals is valued at $250 billion, just imagine the market worth estimate for locating a sick individual (cancer patient) or patients with a rare disease disorder.
Commercial usage of de-identified patient data is enormous: it enables and accelerates innovation in care delivery models, which benefits healthcare consumers by improving outcomes and lowering costs. Providing data access to digital health entrepreneurs and researchers allows them to use advanced analytical tools to uncover insights that can be used to drive innovation in care delivery, population health management and a variety of other things.
Ayushman Bharat Digital Mission and their outcry for digital health where “citizens will be able to create their Ayushman Bharat Health Account (ABHA) numbers, to which their digital health records can be linked,” has created a sudden flux of digital health tech companies trying to integrate with ABDM infrastructure to build digital health ecosystem of India: (market size estimated to be Rs 21 crores).
Despite the obvious commercial benefits of private-public partnerships, pandemic push, media and government hype, the traction for the digital health service and app remains obscure.
This poll outcome could either be attributed to a lack of faith in digital healthcare or on general non-seriousness attitude about health in India.
On the other hand, pharma and lifescience companies spend millions of dollars conducting a survey and obtaining syndicated data from market research organisations to gain a few patients’ insights for sketching patient journeys and then selecting appropriate marketing levers for crafting impactful marketing strategies that make their product (brand) value proposition looks meaningful. Yet, they too are cautious and hesitant to approach and communicate directly with their end-user, the patients (for whom they all ostensibly care).
This hesitancy is most likely due to their internal resistance to change or a fear of antagonising HCP (Rx generator).
“If companies are already spending a large amount of money to acquire access to data, why not pay it forward and reward those that are providing it?” is a logical preposition.
Technology can be the best facilitator you can conceive of when it comes to monetising healthcare. The use of patient data might be made more transparent and patients could have authority over their health records, thanks to the underlying blockchain technology and the Non Fungible Tokens (NFT) certification.
A non-fungible token is “a unique digital certificate, registered in a blockchain, that is used to record the ownership of an asset such as an artwork or a collectible.”
Where can one buy NFT in India?
NFTs have just arrived in 2017 and have grown over time. Currently, none of the NFT players operate in the healthcare market, which represents an untapped opportunity to investigate and exploit.
It’s very likely that by selling one’s health data, the life/healthcare industry (buyer) will make millions and might just share a little portion with data providers (patients). Furthermore, when sensitive health data is moved along the transaction chain, there is every likelihood of it being mishandled and abused. By tagging health data with NFTs, give it a built-in feature that allows it to be tracked. Patients (beneficiaries) can track where their data goes and hold anyone who utilised it without their consent accountable, as they are the exclusive owners validated through NFT authentication. Furthermore, the NFT owner can enable a feature that allows them to earn money every time the data is used in a transaction.
This is precisely the core of a new business model – The CURE chain, “a dynamic NFT-based blockchain where researchers gain access to huge volumes of data.” “In practice, anyone can choose to provide their anonymised health information, test results, conditions and more,” the patients’ incentive is that “the more data they contribute, the more they get personally rewarded.” With data being kept private, and only vital measurements and medical history is collected, the risk of misuse is minimised.
CURE is positioned as a charity first and would accelerate the discovery of cures and treatments. At the same time, the patients who helped provide the data could be rewarded with perpetual royalties for their contribution.
With an NFT strategy, any health tech companies that provide digital health services/solutions, might it be pharmacy/diagnostic labs or Clinical Research Organisation (CRO), that reach out directly to patients may charm them to submit their health information in return of loyalty points. Moreover, any third parties (e.g. life science/health insurance) interested in using patient health data for R&D, developing new products, generating real-world insight, orchestrating patient journeys, designing better patient adherence models, so on and so forth, might be willing to give a percentage share to all those patients who volunteer to help make their algorithm smarter and better.
Aimedis is another such startup, with a medical NFT marketplace where patients engage in transactions involving their health data. Individual activity and wellness data collected from popular apps like Apple Health, Google Fit and Fitbit, are curated into Well-being NFTs, (W-NFTs), that can be now sold on the open market.
Going further, it will be simple to locate and obtain health information. For instance, “a company may require people with X condition and Y age range,” which when fed into an NFT portal provide exactly that “a high likelihood that in future, pharma might buy information tailored to their needs from this NFT portal and save money on “dummy data.”
As NFTs provide transparency and accountability to the exchange of personal data, the blockchain-based technology allows companies or research groups to verify “the authenticity and provenance of the health data” they are buying, potentially improving public trust in the pharma industry.
The NFT strategy could also be used to conduct phase-IV (postmarketing) studies or use it as an alternative to the Patient Assistance Programme (PAP), where instead of providing free drug supplies in exchange for a committed unit purchased, the programme might monetise health record submission or keep that as one of the criteria for enrollment and continuation of free drug supply. Another advantage of gathering and monetising health data is that it might be used to create monetised adherence management toolset or for designing Patient-Reported Outcome (PRO) studies – real world evidence data.
The Indian government has launched a similar programme for tuberculosis patients, where patients are rewarded for downloading and registering tuberculosis app for adherence management, and regular users are rewarded with cash for nutritional support.
The flip side of the NFT strategy is that many pharma companies might not be particularly enticed by the idea of sharing their profits with patients, from whom they’ve traditionally been profiting off and not the other way round. Overall, although NFTs are still in their early stages, the technology may grow in the future to make it more compelling for patients to choose the agency it provides over their data. There are major obstacles to overcome before NFT becomes ubiquitous in healthcare, but its potential is undeniable. It would be fantastic if all parties involved considered how the interchange of personal health information may benefit us all.