“CareAi”—Speculative Tech and the Future of Healthcare Data

The concept of data as a currency is becoming ever prevalent as technology integrates further into our daily lives. The more data currency an entity, platform, or social structure has, the more its insights can drive civic and policy change. Unfortunately, as people continue to use most modern technologies, their data, and its ownership, its value is simply given away. This challenge has created valuable space for anthropologists, data scientists, technologists, and designers to develop civic interactions that help citizens maintain their data value.

Triem, a collaborative effort between SalusCoop and Ideas For Change, is a study that uses collective intelligence mechanisms to co-design licenses to access and use our healthcare data. Our data and, in turn, its currency is one of our most valuable assets to leverage. Collective data governance and sovereignty is fundamental to accelerate innovation towards the common good. Triem aspires to unpack the wicked problem of education, interaction, and the impact of healthcare data by asking thoughtful questions:

What might our healthcare system look like, given individuals or communities have agency over this data? What are the conditions under which we might share this data? How might future experiences and technology be designed to facilitate and empower individuals and communities?

While working on Triem, Ideas For Change was approached for a compelling collaboration opportunity. The Joint Research Centre (JRC) from the European Commission started a project around the forward-looking exploration of blockchain and distributed ledger technologies for industrial disruption called #Blockchain4EU. Our enduring drive to unpack some potential solutions to the questions raised above was our natural prerogative… and thus came CareAi.

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CareAi poses a future scenario for intelligent and anonymous healthcare by using lab-on-a-chip technologies. Supported by a distributed fabrication economy, this open-sourced design is built on top of blockchain and smart-contract supported technology. CareAi facilitates an interaction to provide anonymous healthcare advice — adding it to someone’s medical history through artificial intelligence. This history might then be used to fully integrate that person into a formal medical system later.

In this forward-looking scenario, one might be paid with a smart-contract based token system to provide their data, called CareAi Points. These points can then drive economic interactions in the form of a valued currency, locally and at scale, exchanging economic value and intelligent healthcare feedback for anonymized data.

Governments and enterprises then pay to gain the data insight of individuals and communities that might prefer to retain their anonymity. This data can be presented to healthcare officials as a tool to gain insights into underrepresented individuals and their communities: undocumented migrants, ethnic minorities, or the homeless. Such a policy might create more inclusion in healthcare outreach, enabling a more diverse community in heterogeneous individuals’ identities and tightening our global one.

Core Interaction Stages:

1) Fabrication SMEs produce CareAi points from an open-source blueprint.

2) An undocumented person donates their blood data into the CareAi point.

3) The CareAi point is loaded with Artificial Intelligence software that references a vast array of medical & diagnosing libraries. It dispenses advice with a corresponding rating of confidence.

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4) This advice is coupled with a QR code with which participating healthcare NGOs can claim back any attention paid to the individual.

5) The data contributed is anonymized and stored securely on the blockchain, along with data from various CareAi points.

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6) Smart contracts on the blockchain manage the rights, permission, and access to the health data.

7) A Distributed App can be used to access this data through smart contracts.

8) Governments and corporations buy tokens with which to use the app. These tokens are then used to pay the Healthcare NGOs and the creators/ maintenance of the points.

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complete chart here — courtesy of Gui Seiz

As we continue trying to empower and put leverage back into the hands of our global community we need to keep finding ways to get and retain the agency of our data. We need to advance in:

  • Creating a standardized policy to help individuals own or license their data.
  • Having software that allows for accessible, distributed, immutable, and trusted data storage.
  • Creating education around the importance and impact of data ownership and its licensing.
  • Designing experiences and technology that facilitates the creation of policy, education, and use of software between individuals and communities.

Looking back at CareAi and the progress of Triem so far, we’ve made some significant progress. However, we all still need to work together to tailor strategies and solutions in democratic and egalitarian ways. I challenge everyone, from designers and technologists to policymakers and community leaders, to create with intention. Strive to build trust between people and technology. Focus on raising the floor. Educate everyone on the benefits of data currency, governance, sovereignty and it’s collective impact.

I want to thank and acknowledge those who have been working so diligently toward this common goal:

CareAi Concept Creation:

#blockchain4eu Organizers:

My roles: healthcare data permissions consultancy and prototype / creative technology development. Check out the repo! If you might be interested in taking this to the next level through collaboration or sponsorship, complete with federated learning, ethereum deployment, and affective computing, get in touch.

Updated/Edit: Since having written this article CareAi has been featured in a series of posts:

Written by

Cognitive Technologist: Social HCI, UX Design, FullStack Engineering. Creating impactful experiences between technology and social systems.

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