How to build an internal economy using patient health records as scarcity

grantadams

New member
Dec 2, 2018
5
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#1
Hello all!

I'm exploring a startup idea for digitizing health records in French West Africa to enable the sector to leapfrog to a better, value-based and more sustainable state than it currently is in today.

I would like it to be a decentralized autonomous organization that is fully "owned" by a combination of the patients and medical practitioners that create the patient records. For now, my working title is "blockEHR" (blockchain electronic health record, but pronounced like "blocker"). Here's my first draft website: https://adamsgrant87.wixsite.com/mysite

I need some help thinking through how the value could be represented in the organization, and would appreciate feedback and new ideas.

The broad brush strokes for me are:
- Patients need access to their health records for free and forever, but can't monetize their records
- The medical practitioner who creates the health record needs access for free and forever, and can monetize these records
- Medical practitioners who request access to patient records created by other medical practitioners need to be authorized by original person, but cannot pay for this access, and once granted access have it forever
- Governments, third party organizations, etc. can pay for access to medical records (but stripped of any unique identification information specific to the patient, only the symptoms, tests, outcomes, etc.), and once they purchase access have it forever
- If entire dataset is provided to government, third party, etc. then the owners have a vote yes/no (simple majority based on tokens held)
- Access to the medical records can be "sold" multiple times by the owners (i.e. medical practitioners) to multiple organizations that desire to use the data

I was thinking about creating an internal currency which I am calling "blockEHRbucks" for now.

Here's my idea on how this could maybe work:

1) Medical practitioner creates a patient record, and is given 1 blockEHRbuck
2) blockEHRbucks are used to "pay" for the platform to operate (i.e. exchanged for ethereum/filecoin if built on these)
3) If the value of blockEHRbucks isn't high enough to be converted to ethereum/filecoin to maintain the platform, then the medicial practitioners must pay into the pool of blockEHRbucks to bring up the value
4) 3rd party organizations can "purchase" access to electronic health records, and this pumps value into blockEHRbucks and brings up the value

As new patients are treated, more and more blockEHRbucks are created and this should drive the value of the blockEHRbuck down. As 3rd parties "purchase" access to blockEHRbucks this drives the price up as the value is distributed across the economy. There should be some sort of minimum threshold value of blockEHRbucks to allow them to cover the costs of ethereum/filecoin, and perhaps even a maximum over which the additional value would be converted to currency and paid out as dividends of sorts to the owners.

For the medical practitioners, it'd be kind of like having a house with solar panels hooked into the grid. If your consumption is greater than production, then you have to pull electricity from the grid and pay for it. If production is greater than consumption, then you sell off the extra electricity to the grid and you get paid for it. For blockEHR, if enough 3rd parties are buying access to the data, then you make money, if they're not buying access, then you have to pay to maintain the platform.

If you're interested in helping me think through this problem I would greatly appreciate your time! Links to resources and the like would be very welcome.
 
Likes: smokeyAssets

entelechy

Administrator
Staff member
Jul 8, 2018
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#2
Hey Grant. Can you clarify:

1. When medical practitioner is given 1 blockEHRbuck for creating a patient record, what is a patient record and why are practitioners rewarded with some of the token at this point?

2. When you say that "blockEHRbucks are used to "pay" for the platform to operate", how do users actually use or burn the token? What function of the system is dependant on having blockEHRbucks in order to use?

3. I'm reading into the blockEHRbucks converting to ETH/Filecoin process as requiring payment from practitioners in blockEHRbucks in order for them to be transferred to a liquid asset like ETH for eventual fiat payment. Is that accurate, or does fiat conversion never come into it?

4. Allowing 3rd-parties to purchase medical records and forcing the need for blockEHRbucks in order to do this is a good way to increase demand for the token. Do you think that users would be worried about their data being sold onto 3rd parties? Are there other mechanisms you have in your design as well which can create additional demand for the token? (<<This is KEY)
 

grantadams

New member
Dec 2, 2018
5
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#4
Hey Grant. Can you clarify:

1. When medical practitioner is given 1 blockEHRbuck for creating a patient record, what is a patient record and why are practitioners rewarded with some of the token at this point?

Each patient is a unique individual, and each time they come to the hospital a new record of that visit would be created. This record would link to the patient identification information (name, sex, DOB, address, contact, ID, fingerprint, etc.) and contain information about what occurred during that visit. For a typical outpatient, there would be data collected on weight, height, blood pressure, pulse, upper arm circumference, and temperature. The symptoms that the patient is experiencing would be recorded by the consulting practitioner. Any lab tests and outcomes of tests would be recorded as well. Finally, a diagnoses is given by the medical practitioner and treatment is prescribed. All of this information would be contained in a single "patient record". Each time the patient returned to the hospital, a new record would be created, so that a single patient can have an unlimited number of records.

The idea behind rewarding a token to the practitioner at this point is to have something that can show that the record is "owned" by the hospital/clinic that conducted the prognosis. The data contained within this record is very valuable, and my philosophy that I'm using at this point is essentially based UN declaration of human rights, article 27:

(1) Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits. (2) Everyone has the right to the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author.

Because this data will be used for "scientific advancement", I feel that it is imperative that the data be democratically managed. And medical practitioners, as "authors" of their medical opinions contained within the record, should be protected as is commonly done with copyright law.


2. When you say that "blockEHRbucks are used to "pay" for the platform to operate", how do users actually use or burn the token? What function of the system is dependant on having blockEHRbucks in order to use?

So creating blockEHRbucks may not be necessary, but I was thinking that it could be a way to 1) assign voting rights to the medical community at large, and 2) have value that varies based on supply and demand. This value would be a way to pay for maintaining the technical backend of the organization, and could potentially provide incentives to adopt use more quickly and promote high-quality data. The challenging aspect for me about blockEHRbucks as I've imagined it is that a medical practitioner cannot actually "give up" his/her ability to have free and open access to the record he/she created. And I wouldn't want those outside of the medical community to be able to take control over what is or is not done with the data. Thus I thought that outsiders could essentially "pay" into the pool of blockEHRbucks to gain access to a set of records, and this injection of value would be spread across all blockEHRbucks (like a collectively-owned asset being sold and each person receiving payment equal to his/her share).

Obviously more thought needs to be put into this. But does that help convey a bit what I'm imagining?


3. I'm reading into the blockEHRbucks converting to ETH/Filecoin process as requiring payment from practitioners in blockEHRbucks in order for them to be transferred to a liquid asset like ETH for eventual fiat payment. Is that accurate, or does fiat conversion never come into it?

Here I'm thinking that the ledger could be hosted on ethereum, and I'm assuming that this would cost ETH to be able to add these hashes to the ethereum blockchain. I'm pretty new to blockchain in general, and I've only thought about ethereum because of Siraj Raval:

He suggests that Ethereum is a good blockchain to use for scalable computation, as it is turing complete. I only vaguely understand these concepts and am reaching here.

For filecoin, I am actually quite attracted to the idea of using the IPFS to host the electronic health records themselves. Since IPFS relies on filecoin, I assumed that these would need to be purchased in order to host the data coming in. IPFS could have a couple of benefits, specifically in the West African context:

A) Latency is a huge problem here as the current internet wasn't built to favor rural West Africans. As most of the time practitioners would be sharing medical records between each other within the same country, it seems like having this data hosted by all of the users of the network could reduce latency and allow for a quicker system.
B) As this system would require massive increases in the number of phones, tablets and computers, the amount of "local" storage space available to host on the IPFS would increase quickly. A small clinic might have 10-20 devices, and if each device could be added an additional 128gb card, a single hospital could have more storage space than they would need for many years. This extra space could be allocated to IPFS and perhaps filecoin could be earned as well.
C) Governments have the habit of shutting down the internet during civil unrest. Even during the toughest strikes and martial law, hospitals remain open and society supports their continued operation. Putting all of the health records on IPFS would ensure that hospitals could continue to have access to these records and could continue to use the system even during these periods.



4. Allowing 3rd-parties to purchase medical records and forcing the need for blockEHRbucks in order to do this is a good way to increase demand for the token. Do you think that users would be worried about their data being sold onto 3rd parties? Are there other mechanisms you have in your design as well which can create additional demand for the token? (<<This is KEY)

As it stands now within healthcare, patients essentially trust their doctors to decide who is able to see their medical records and who is not. Doctors all take the Hippocratic oath, in which they pledge to do no harm and to not divulge information that could be considered sensitive in nature. This trust in doctors to decide seems to be pretty universal within most societies.

Currently, with centralized electronic health record databases, I think that patients simply need to agree to have third parties use their data, and then the owner of the centralized database is able to monetize the data however they see fit. My original idea with this startup was to build a centralized database that I would own, and offer access to it at a subsidized rate to medical practitioners as I could recuperate costs by monetizing the data later. Morally I don't agree with this approach (plus there's already a lot of competition out there), and that's when I started looking to the idea of a decentralized autonomous organization.

I think that the medical practitioners would need more control of who has access to their data, and this is also where the blockEHRbuck comes into play. If a single blockEHRbuck was created for each record, then medical practitioners who consult more patients would have more voting rights to decide how the data is used. Perhaps a system of bids could be put in place, in which a 3rd party organization would approach the users of blockEHR to negotiate purchase of all 50,000 current health records for $2,000. A simple majority vote could be held by all holders of blockEHRbucks equal to their blockEHRbuck holdings to accept/reject the offer. Each holder of blockEHRbucks would have the right to read and understand the sale agreement, and determine if the purchaser will be using the data in a good way before accepting or rejecting. This purchaser wouldn't have the right to re-sell the data, at least not in raw form, but only abstractions of it. If non-profit organizations wished to negotiate a purchase of data, then they could request the data for free and if the users of blockEHR accepted than this would be okay.


In reality, I suppose a single blockEHRbuck could be related to value based on ETH or another type of cryptocurrency, and purchases of ETH would be made automatically when these sales or expenses occur. I get a little confused at this point about how this could work.

If we zoom out a bit here, essentially what I'm trying to create is a system in which price discrimination can be introduced to obtain access to health record data. An insurance company, for example, should pay more money to have access to medical data as they will use that data to increase efficiency and will make their operations more profitable. A non-profit or academic institution, for example, should pay less or nothing for the data as they will use it to further knowledge. In either case, it should be up to the medical practitioners themselves to determine how much their data is worth to the various interested parties. But, because the data does have true value, the medical practitioners should be able to use a portion of this value to maintain the system (essentially rendering it "free for use") and obtain monetary benefit if the value is high enough to others.

The positive feedback loop that I'm trying to create would provide incentives for better data (making it more valuable to 3rd parties), and for better healthcare to the patient. Because hospitals/clinics would obtain more control by treating more patients and having patients keep coming back (i.e. more blockEHRbucks earned) hospitals that provide value-based care would have more ownership of the network and proportionally more profit derived from it.
 

entelechy

Administrator
Staff member
Jul 8, 2018
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#5
Great to see well thought out blockchain ideas.


"Any lab tests and outcomes of tests would be recorded as well. Finally, a diagnoses is given by the medical practitioner and treatment is prescribed. All of this information would be contained in a single "patient record". Each time the patient returned to the hospital, a new record would be created, so that a single patient can have an unlimited number of records."

There's definitely an opportunity here to incorporate the way that this data is stored into a blockchain directly as well, which could be another mechanism for the creation of demand by requiring practitioners to pay with blockEHRbucks in order to store and retrieve data. One challenge of tokenomics is incorporating a legitimate need for the use of blockchain into the model.

I think there's clearly value in a system which manages medical data like this, both for practitioners and patients.


"So creating blockEHRbucks may not be necessary, but I was thinking that it could be a way to 1) assign voting rights to the medical community at large, and 2) have value that varies based on supply and demand. "

Again the real key is to design a system which legitimately requires the use of a token, in order to gain the huge benefits that come from creating that system. Even if it's not strictly necessary, the benefits of finding the right combination of setting in order to maximise the benefits to all users is worth it. The growth curve when utilizing a well-designed token is much higher than without.


"For filecoin, I am actually quite attracted to the idea of using the IPFS to host the electronic health records themselves."

I'm not overly familiar with Filecoin, but from what I have heard about them it looks like a revolutionary application of blockchain tech.


"But does that help convey a bit what I'm imagining?"

Yes it does.


"Thus I thought that outsiders could essentially "pay" into the pool of blockEHRbucks to gain access to a set of records, and this injection of value would be spread across all blockEHRbucks (like a collectively-owned asset being sold and each person receiving payment equal to his/her share)."

If you can bring in a method of providing value from this to patients I think it would be a perfectly-closed loop. After all, the data generating the value for the system is coming from them, and there's the consideration of permission for their data to be sold (or their happiness to provide said data if it is being sold and they disagree with it).

A mechanism for them to be rewarded whenever data is purchased could close the loop and balance the supply/demand dynamics throughout the system.


"Here I'm thinking that the ledger could be hosted on ethereum, and I'm assuming that this would cost ETH to be able to add these hashes to the ethereum blockchain."

Sure for using smart contracts/ethereum blockchain there would be continuous gas fees that would need to be considered. Although for most applications they're fairly negligible


He suggests that Ethereum is a good blockchain to use for scalable computation, as it is turing complete. I only vaguely understand these concepts and am reaching here."

Building on the Ethereum blockchain is by far the most common way to build dapps. I think most languages are turing complete (essentially you can do a commonly required set of things with the language), and scability.. Ethereum's had problems with network overload, and some of it's shine from early 2017 has rubbed off a bit. But the project itself is most likely ideal for what you're trying to achieve, and it's definitely the most widely used technology to build dapps - hence more devs to work with.


"Morally I don't agree with this approach (plus there's already a lot of competition out there), and that's when I started looking to the idea of a decentralized autonomous organization."

It's a 100% better idea when applying blockchain/decentralization also imho.


"If a single blockEHRbuck was created for each record, then medical practitioners who consult more patients would have more voting rights to decide how the data is used."

Empowering practitioners who provide greater levels of support to the system with greater responsibility and control via voting rights is definitely one of the best ways to ensures the strength of the network. Counter-mechanisms to prevent centralization and over-control of a group of practitioners would be important as well.


"If we zoom out a bit here, essentially what I'm trying to create is a system in which price discrimination can be introduced to obtain access to health record data. An insurance company, for example, should pay more money to have access to medical data as they will use that data to increase efficiency and will make their operations more profitable. A non-profit or academic institution, for example, should pay less or nothing for the data as they will use it to further knowledge."

Excellent concept. I'd make sure that even if an organisation is entitled to reduced financial costs, you're constantly trying to find alternate ways that they can support the robustness of the ecosystem. I'd try to use the fact that you're allowing them to access valuable data cheaply/for free to extract some other kind of value, such as something (again) to return value to the patients, creating as many strong rewards loops as possible.


"The positive feedback loop that I'm trying to create would provide incentives for better data (making it more valuable to 3rd parties), and for better healthcare to the patient."

Yes. This is the exact kind of thinking I meant.

Out of curiousity, are there any ways that you can think of that this platform could provide the tools you need to develop this concept? Would a place to find others to discuss ideas like this with in the hopes of team formation be useful, or any other thing we could do to help?
 
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grantadams

New member
Dec 2, 2018
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#6
Thanks for all of this great feedback. I'll have to explore more the things you've brought up a bit before I can think of how to ask my next set of questions.

I'm really blown away by the Interplanetary File System... Apparently D-Tube is hosted on this system (https://d.tube/). Recently I lived through a 3-month internet blackout in an un-named African country (I'll keep it anonymous in case I decide to return there one day and don't want to get arrested). It's really unfortunate that governments are allowed to restrict access to information from citizens like that.

The IPFS is only one potential solution to this problem of governments having too much control over ISPs and centralized servers to restrict access to information. I'm pretty inspired by SpaceX's Starlink constellation, as this could enable rural West Africans to have access to information by going to other ISPs that local governments can't influence.

In reality though, the country in which I was living also suppressed access to information by disabling the electrical grid for 3-5 days at a time. This is also an option as people wouldn't be able to charge their devices and therefore weren't able to communicate without access to solar or motor generators.

"Out of curiousity, are there any ways that you can think of that this platform could provide the tools you need to develop this concept? Would a place to find others to discuss ideas like this with in the hopes of team formation be useful, or any other thing we could do to help? "

Yes! What I'm trying to right now is essentially just build up an idea that I can get a few people to support. I believe that I need to identify a small number of capable and motivated people from three separate worlds:

1) Crypto people and developers to help with the platform
2) Healthcare people, especially interested in disrupting current health systems in Sub-Saharan Africa
3) Non-profit and social enterprise people, interested in helping to support establishment financially and assist in organizational growth

I do see an opportunity to unite these three groups around this kind of idea as it could satisfy desires of each community:

My understanding of crypto people is that there could be many who want to offer up their knowledge and time to help build something new with tech that could serve as a proof of concept of the blockchain, web 3.0 and it's value to society and the next step in economic development.

Healthcare people who know Sub-Saharan Africa are pretty much fed up with the current healthcare systems, and would be intrigued by any kind of exciting innovation that had the potential to improve health outcomes for poorer populations. Ebola was kind of a wake up call of sorts about how bad healthcare really is in this part of the world. They could be a bit troublesome to get on board at first, as healthcare people tend to be more cautious around new ideas. However, there could be some that might be able to get on board even at this stage.

Non-profit and social enterprise people are more my bread-and-butter. There's a lot of potential donors out there that drool over the idea of supporting an organization that aims to provide long-lasting economic or social impact with a clear and feasible plan to achieving financial sustainability at a future point in time. Because this platform could become self-sustaining after adopted, there would really only be the highest costs during the establishment phase. This could present an opportunity as it could be completely funded through grants and donations, rather than by searching for investors who will expect a profit in the end. I would want to ensure that the power over the data will truly be held by the patients and practitioners themselves.

From this community, I really need help in understanding the blockchain, and how it could be used to solve the problem I have identified of not having data available to build more efficient healthcare systems serving poorer populations. It seems like the community is pretty small for now, do you have a plan of attack on how to recruit people to join to make it more collaborative? Are there similar communities out there we could try to pull from?
 

entelechy

Administrator
Staff member
Jul 8, 2018
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6
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#7
"Thanks for all of this great feedback"

No problem, it's exciting to see such novel applications of blockchain being created. Nothing better than projects that revolve around helping people also. As with many other industries, the medical sector has many opportunities to monopolise on the benefits of blockchain by incorporating it.

"I'm pretty inspired by SpaceX's Starlink constellation"

Great SpaceX video as well. Had not heard of Starlink, but both it and IPFS are interesting projects. Avoiding government control of the internet via ISPs via access to centralised datacentres is a profoundly important use-case for a number of groups/countries and in general for the freedom of all digital information.

"Yes! What I'm trying to right now is essentially just build up an idea that I can get a few people to support."

Having others here that have an interest in token economy design to bounce ideas off would be ideal for you I think. It sounds like you've got a robust preliminary system designed already, but I'm not an expert in tokenomics and I'm sure someone that is would have a more thorough methodology for assessing you plans.

"I believe that I need to identify a small number of capable and motivated people from three separate worlds:

1) Crypto people and developers to help with the platform
2) Healthcare people, especially interested in disrupting current health systems in Sub-Saharan Africa
3) Non-profit and social enterprise people, interested in helping to support establishment financially and assist in organizational growth"

Yes absolutely, I also agree with you that a combination of members from these three groups would be needed, with core members of your team having backgrounds in blockchain/tech and healthcare. Possibly there are others as well from neighbouring countries or your local area who would share your vision for their countries/areas also.


"From this community, I really need help in understanding the blockchain, and how it could be used to solve the problem I have identified of not having data available to build more efficient healthcare systems serving poorer populations. It seems like the community is pretty small for now, do you have a plan of attack on how to recruit people to join to make it more collaborative? Are there similar communities out there we could try to pull from?"

Sure, our aim is to build a community of those who are exactly like yourself: wanting to manifest true value from blockchain technology and develop innovative solutions using it. We would be happy to try to provide an environment that would provide you with the resources necessary to network, build your team, and hopefully then also to give back to the community with the knowledge you have gained and the opportunities you can present others.

We've launched recently, and are developing our expansion strategies now. I would personally welcome you to work with us to recruit others such as yourself that have a focus on providing and receiving true value. Drop me a DM and we can discuss further.