Healthcare data on the blockchain

De-identification usually begins in the source system such as an EMR or HIS solution via application of a patient alias, from there the metadata can be further scrubbed in an OLAP EDW if need be. You could program an A.I. algorithm to do this as a third layer of confidence, train it, then test it. The main issue as I see it is convincing a hospital or clinic CPO to send you this de-identified data. Explainability is key here. I’m not sure if there are explicit/implicit health data privacy laws in Europe, Asia or India as a start but this is definitely a project worth exploring. You would have to map out the “how” and the “where” and start off small. A simple disclaimer on a DaPP registration won’t cut it. Is this something that medicalchain or patientory is trying to accomplish?

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I completely agree to you on deidentifying the data and its explainability.
Europe has the better version of the patient information management laws whereas Asia and India are not so obvious.

Medicalchain is exactly opposite of what I am trying to say but they mainly created a trust and permission system that provides control of the data to the user.
Patientory is doing something similar on the lines of collective data and clinical trial recruiting. It would be definitely worth exploring them to understand how they manage to anonymise the data for collective intelligence and then once the targets are identified, how they were able to recruit the users as they need some pointers back to the user here.

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This is an excellent idea

As a patient I have questions:

Will I be able to remove/retract consent?
What if my doctor “accidentally” annotates a mis-diagnosis? How is this appended to the record?
Will I be able to view my records at any time in a convenient manner?

To Cardano:

How large is a block (how much identifiable data can it hold as in records)? The last time I requested a medical record printout at a Veterans Affairs facility I ended up with 3 reams of documents…10 years ago.

Instead of how much data is in a block, how many transactions would be required to put my entire record on a blockchain? My last transfer from an exchange was $0.22. That’s not a lot but that’s one tx of x-bytes.

Suggestion (not a developer…yet):

I’m having a hard time with this. I still think there would have to be a repository holding the records and professional licensure/qualifications using Cardano as the highway, of sorts.

Or maybe I’m just missing it all.

One thing is certain, medical systems should have the capability to communicate with each other in a timely, efficient, cost-effective manner that is beneficial to the patient and professional regardless of location. Even as a patient the current set up is a burden

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@FL13S. I will try to add my responses assuming that such system will be created in the future on top of Cardano.

Will I be able to remove/retract consent? -

Yes this is possible with Smart Contracts.

What if my doctor “accidentally” annotates a mis-diagnosis? How is this appended to the record? -

The data on blockchains are immutable so it becomes a permanent record.
Will I be able to view my records at any time in a convenient manner? - Yes. Your wallet/account should have access to this.

Instead of how much data is in a block, how many transactions would be required to put my entire record on a blockchain? -

Even though we can store some amount of data in Metadata but this is just 16KB at the moment. So the actual medical data might have to be offloaded to an external blockchain systems.

One thing is certain, medical systems should have the capability to communicate with each other in a timely, efficient, cost-effective manner that is beneficial to the patient and professional regardless of location. Even as a patient the current set up is a burden -

You are right. There are a number of healthcare projects on blockchain in the recent years, but the real problem is they are fragmented at the moment. It requires lot of experts to come together and adapt it in enterprise levels something similar to Healthcare Special Interest Group in Hyperledger which I am part of as well.

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Exactly. This is another area that needs serious thought. I actually had a non-mental-health provider annotate that I was suicidal. Serious errors like these need a method of correction. Understandably this is minute in scale and I’m just brainstorming.

Would you be able to provide current and relevant peer-reviewed, conference and or research papers on the subject from a broad perspective?

Thank you for the timely response as well.

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Welcome to the community!

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I have this designed for groups that choose to self-fund, self-insure the medical service fees.

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As the patient, you retain all rights to your data - this is beyond what HIPAA currently allows. Example of the worst is Epic which takes ownership of the data and you have to contact Epic to get any quality access of data and cannot build apps without their involvement - too closed for future value.
Ultimately, you can manage your rights based on check boxes - either keep a simple version, yes/no; or a more advanced one - yes to doctors, no to research and no to companies and marketing. I have heard ICP may have an advantage with MS account being accessible - so if a unique ID whether it be on Atala Prism or ICP, or Cardano app, then one could individualize the needs of the one.
Medical systems do not communicate well until recently, sort of, because everyone cares about proprietary access from the company perspective, instead of the patient. The patient comes first, period.

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  1. Images - you could make things complicated with sending the entire image, or the smartcontract dapp includes access to the original source storage of the image (Stanford, Sutter, or a local facility).
  2. In terms of transaction fees, that needs to be flushed out. Facilities charge patients for a copy of their records anyways, so a user access fee is reasonable - it could be included in the smart contract for physician care however - particularly if you make insurance companies redundant.
  3. This is answered by what MHMD is doing. If you give access to facilities and research, then all that data from authorized patients becomes accessible. There is also a colleague who is working to monetizing the research access so that if a patient shares their data for research - the patient gets paid/incentivized etc… Lots of options.

I think the key to all of this is to place the patient in mind first, then security and all with an underpinning of ethical foundations. Truly decentralized healthcare means better healthcare access to the people and to empower the people to manage their data sharing and their rights and to subsidize the patient for any research or medical breakthrough achieved by the big companies.
If every smart contract and record is immutable and permanent, then if your lung cancer pathology report was used in a clinical study on the development of a $20000 chemo drug, you get a piece of it.

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Just catching up on this thread. Glad to connect.

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:poland: Polish translation

Having patient data in the blockchain doesn’t necessarily mean that it will be stored in the same “place”: different health institutions may still create different profiles for the same patient tied to different e.g. smart contract addresses.

Also, data in the blockchain is public and not all patients may like having his/her full health profile publicly discoverable and therefore available for full reading (even though blockchain addresses provide anonymity of your data, unless you reveal your public address to someone and therefore such someone becomes aware that such blockchain address is specifically about you). In other words: if someone is doxxed (i.e. “identified”) concerning his/her address and corresponding data in the blockchain, such person may not like it, yet this is going to be an irreversible fact, because what’s stored in the blockchain is stored (and, therefore, publicly available) forever.

Thanks for posting this - there’s so much potential here and so many challenges to work through. I’ve been thinking through this myself.

Some thoughts on this I have are here: Vital: a new approach to healthcare record digitization via the Cardano Network — ADAventures.io

Hi, Thanks for such a wonderful article. I really liked your views and the information you shared. Even I learned about Atala Prism. Since we are living in a digitally growing world where I even order my pack of cigarettes online at a discounted price and enjoy the service, I never realize that I am compromising my Identity, my lifestyle details, and even my privacy so I feel that its important to have control of your privacy, Identity, and life and platforms like Atala Prism are doing really great.

I have been reading about Digital Identity for a long time now and I have come across some platforms that are based on Cardano and working in the same problem statement. Few of them are working in the healthcare ecosystem on the Cardano blockchain-powered by AI with self-sovereign identification. And few are working on sorting the key areas of Digital Identity. I would like to share my favorites:

  1. Immunify.Life: Immunify.Life is a transformative ecosystem secured by blockchain with the mission to transform the landscape of health management and data utilization.
    The project leverages the power of Big Health Data and Artificial Intelligence to ensure seamless movement of de-identified patient healthcare data. They have established a strong presence in Africa with a team that has over 60 years of combined experience in the relevant industries.

It is a world-first holistic and self-sustaining ecosystem to solve global health management crises and data collection challenges. Immunify.Life has designed a unique AI-supported incentivized digital disease health registry using immutable NFTs, and secured by blockchain.

  1. PhotoChromic: PhotoChromic is the first intuitive, biometrically managed Self-Sovereign Identity system built on the blockchain. The protocol aggregates biometric liveness, government-backed identity, and unique personal attributes into an on-chain NFTs that can be used for Web3 applications and on-chain verification.

The protocol’s intuitive self-sovereign identity system ensures a high level of security and allows for the self-management of users’ online identities. It also enables the verification of true biometric identity linked to one’s physical and digital assets.

Please feel free to share your views about these platforms.

Very interesting …

The whole purpose is to be able to store everything on the blockchain so it can be encrypted and you can access it only if patient’s gives their consent right?

Will doctors be able to access the patient’s information without authorization?
How does a doctor have access to the medical information in case of an emergency ?

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Hi Praveen - I am also planning to work on implementing blockchain for healthcare. I am working for digital health innovation hub in Ireland and want to know the major challenges and advises you have from your research. Any slides, paper … will be helpful. Plus if you know any other blockchain frameworks that might suit healthcare.

Patient centered care…
Ensure the control of information remains with the patient/individuals no matter what.
Consider the possibility of abuse of power by authoritarian entities, and use of information against the patient/individuals, as is the case right now in many parts of the world.

Be kind
And please consider the underrepresented when you develop this technology.

Just throwing this out there… I have 8 years experience in hospital laboratory services. 4 years of lab management. I am an early adopter of Cardano and love my NFTs. I am aware of the unlimited potential of Heath data and blockchain for the patient and the provider. I’m willing to put all my energy to onboard laboratory data and medical records on the chain. Also willing to relocate! Cheers.

For which problem does a blockchain provide a solution in this realm?

Can’t we just get signed PDFs from our healthcare providers and be good?

The data itself is too much to put on a chain. It will have to live off-chain in some kind of more-or-less decentralised cloud.

The healthcare providers have to be onboard either way. If they do not consent on using this strange blockchain technology that up to now only gamblers use, the data will never be put in this shiny new system. But then, they could also consent to the much simpler system of giving me a signed PDF with my data that I can choose to archive however I want and give to whomever I want.

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