Proposal - Health X Change - Structure and pull healthcare data on behalf of patients in the US

Name of Project: Health X Change

Proposal in one sentence: We aim to compensate users in crypto in exchange for access to their health data.

Description of the project and what problem is it solving:

Description : We pay US based users with our token in exchange for access to their data. We will then anonymize and aggregate data across our user base and apply ML models to figure out disease state correlations with measurable biomarkers (ie. genome, analyte levels etc.). We then plan to commercialize these insights in the form of pharma partnerships and use the revenue generated to transfer value back to the holders of our token (ie. our users).

Problems we solve: In the United States, health data is currently bought and sold without explicit patient permission, hospitals and other health companies do this on behalf of the patient without actually compensating patients. We want to make sure patients are properly compensated for data the rightfully own.

Additionally, we believe that creating a dataset like this at scale will yield novel drug targets and assets, which will be more effective than the current standard of care. On top of therapeutics, this data set can be leveraged to create predictive disease models to diagnose patients at an earlier, more curable stage of disease (ie. early detection of cancer).


We propose an ecosystem model like the one described above to provide value to users who choose to share data with us.

Grant Deliverables:

  • To create a friendly UI that allows a user to provide minimal but sufficient personal data to access their health records across the United States (using a third-party test API)
  • To come up with the architecture to store resulting data in a manner conducive to future ML /AI analysis

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We are looking for an SWE with experience with FHIR / healthcare data. Ideally this person has helped build data product in the healthcare space and has a basic understanding of ML (enough to assist in building a data strategy)

Squad
Official Website: https://www.health-x-change.com/
Official Discord: Health X Change
Official Twitter: @Health_XChange

Hari Jayaraman – CEO & Founder
Digital Health Consultant, Ex-BlackRock, Biochemist by Training
Twitter - @HariJayaraman3

Sridhar Madala – CTO & Co-founder
Cloud Architect, Experience in early stage D2C and B2B startups, Biologist by Training

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Im pretty sure HIPAA requires explicit permission:

The health data can be anonymized, but just like tissue samples, its impossible to change this, when a patient is at the mercy of the hospital / insurance company, which has an invested interest in generating predictive health models and data mining patient data, the patient is in a “captive market”.

I believe that there is value in this space, and people should be able to sell their own data, but i don’t know how competitive you can be on price with data, which is otherwise obtained for free. see e.g. The Cancer Genome Atlas - Registry of Open Data on AWS

Instead I believe that the value you could add is in the analysis of the data itself, however that is more difficult than just being a data broker.

Hi @endomorphosis , thank you for your thoughts. We always welcome feedback :grin:

Re:HIPAA - yes we actually plan to create a HIPAA waiver and gather explicit e-consent from any users that opt to share data with us. At that point, we would fall under HIPAA but would still be able to anonymize data and utilize it for commercial activities (similar to how hospitals do it today). The ability to pull data is also guaranteed by the CURES act and guarantees around patient data access / penalties around information blocking. https://www.congress.gov/bill/114th-congress/house-bill/34

The second point about the value of data in isolation is spot on. To your point, we do plan on doing more analysis and monetizing through longer term partnerships versus selling the raw data access. These partnerships generally have much higher deal values, and we prefer to engage in activities that increase value for our tokenholders. On top of the analysis, we believe that the holistic nature of the data we will gather will allow for more unique insights. For example, health record data sets may be worth a few $ each to a buyer, but a matched data set of clinicogenomic data is worth 10x more (Sharing Clinical and Genomic Data on Cancer — The Need for Global Solutions | NEJM). This is to establish genotype-phenotype correlations that are useful for drug dev purposes. But other data sets can be tied to health records for similar results (ie. proteomics, wearables etc.).

On top of the variety of datasets we can gather, there is also clear value in engaging with our users. For example, we can conduct market research surveys and clinical trial recruitment activities on our platform since users will come to our platform to claim their regular token payments.

Please feel free to reply with any other comments or questions or DM me on discord/twitter or on here. Thanks again for your feedback!

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Hey @Haru!

we are working on the data side of things with these medical startups already (ncight.com, brainstem.health, @healthlink_) as DataUnion (https://dataunion.app) is providing a tech stack to handle data collaborations with privacy preserving data derivative creation, royalty sharing, decentralised model creation etc.
Additionally we work close with Algovera as well - would love to chat. I am in the Discord of Algovera as well.

Btw. you got some of my votes :slight_smile:

Best,
Robin

1 Like