Isn't It My Data?
Ownership and Control Of Medical Health Data
Recently we needed to move to a new family doctor, and called our GP to ask about transferring our health records, to enable continuity of care with our new provider.
If you've ever tried this, you will have also found out that the NHS considers your health information on their property. Now this seems to be an area of confusion, especially in the era of GDPR.
Doing some additional research on this topic, it seems that there is a distinction between ownership of the physical record, and ownership of the information on that record. This leads to a confusing situation where non-digital, older medical information written on paper cards, is inaccessible and archived somewhere in the north of England. Whereas electronic records seem to be a lot more easily accessible, albeit surrounded with some level of confusion about whether or not they can be shared with the patient.
Although individuals may be classified as data subjects, the information about them may be simultaneously “owned” by different individuals, organisations, governments, as well as by society.
However, what is this got to do with interesting technology? I'm glad you asked.
Data ownership has many implications, from privacy and data protection, to customer ownership and revenues. In my career, I've seen a number of potentially game-changing innovations disintegrate because of a disagreement between the two parties as to whose data it was, in other words who owned the customer.
In the world of health and medical research, where data makes all the difference to research grants, outcomes, and future revenues the fight for data and customer ownership is tough. As an individual whose data is being fought over it's going to be even tougher to stamp your mark of ownership on that data.
Blockchain and Medical Data
Since poking its head above the metaphorical parapet, Blockchain has been the mythical answer to many of our societies big challenges. Some of these are with merit, some of them I think are slightly more fanciful. However the idea of using Blockchain to provide more transparency and control over patient medical health data is one that has gained momentum.
However, even in the Blockchain utopia of distributed, decentralised data where no one really owns the data, in the medical health sector blockchain will need to deal with multiple ownership of the same data sets.
The dream is to find a solution that allows individuals to both own and monetise their data, allow research to be done against this data in a consented way to allow Health organisations to optimise health provision and delivery, reinforce governance and much more. Currently as mentioned above and individuals health information is dispersed across many physical and digital locations, administered and owned by several organisations and institutions, and used in both societal and commercial purposes, mostly without the individuals specific knowledge and consent.
There’s an opportunity to capture the holy grail of health IT, which is to put the patient back in the center of their care.
So with this in mind this morning I thought I would have a quick look to find interesting technology companies that are working in the space. Below are the top five Blockchain focused decentralised healthcare start-ups trending today.
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Top 5 Trending Blockchain Companies
Receiving $25,000 in seed funding in October 2020, Kimbocare is a Swiss-based, blockchain enabled tech startup with operations in the United States, Ivory Coast and Cameroon. Their vision is to enable better health and well-being for true empowerment of financially underserved communities.
Rasing €30,000 in October 2020, Italian company Elysium provides a decentralized platform based on blockchain technology to securely share confidential health data between patients, doctors and healthcare facilities.
ProtectedBy.AI Healthcare, a subsidiary of ProtectedBy.AI, is specialist in behavioural data science and applied artificial intelligence, headquartered in Washington DC. ProtectedBy.AI Healthcare brings Artificial Intelligence and Blockchain to one of the fastest-growing and underserved markets in history: Electronic Health Records (EHR)
Founded in South Korea, Medibloc creates an innovative paradigm to healthcare industry by developing a patient-centric healthcare data solution to make everyone's life healthier.
YouBase makes it safe and easy for consumers to access, control and share valuable health and personal information. YouBase enables individuals to maintain their data and identity across various places where they have health care encounters in their daily life, and share as they like too.
Tell me what you think
What do you think? Share your thoughts with me, and leave a comment below.