JLI believes there is much to gain from sharing data in health. The opportunities to make health systems fairer, more efficient and deliver better health outcomes can hardly be overstated.

We push to find solutions that allows society to share health data and to create value from it, safely and in the interest of all. We believe that data as an economic input could be governed through public-private partnerships for social capital development. These institutions have proven to be very effective in creating value for society, such as pension funds.

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What is a Health Data Collective?

A Health Data Collective is an organization or initiative that gathers, manages, and shares health-related data from multiple sources including hospitals, clinics, insurance providers, research institutions and patients themselves. The primary goal of these collectives is to create a centralized resource of health data that can be used to improve healthcare delivery, conduct medical research, and support public health initiatives.

Health Data Collectives aggregate individual’s personal health data via encrypted, safe storage and secure key access to help improve patient outcomes and accelerate scientific breakthroughs. 

Why a Health Data Collective? How can it improve healthcare? What’s in it for me?

1

Your data, your right

You have the legal right to your data. We want to ensure you have access to it and know where it goes.
2

CATCH HEALTH ISSUES EARLY

Having your health data in one place will help providers catch potential issues earlier, making them more treatable.
3

GET THE BEST CARE FOR YOUR SITUATION

By granting your care providers access and insights into your health data, they will have a better understanding of your situation, enabling them to build the most suitable care plan for you.
4

IMPROVE QUALITY OF CARE

Get access to more personalized treatments and early interventions based on collective insights of the data pool
5

BUILD A MORE EFFICIENT HEALTHCARE SYSTEM

Connecting the health care providers to your data will create efficiencies across the healthcare system. Eg: Doctors will easily be able to access previous lab tests, removing the need to do them multiple times because they were not shared.
6

CREATE A MORE TRANSPARENT HEALTHCARE SYSTEM

Having a central data point will reduce the amount of administration across the healthcare system—making it faster to diagnose, receive and pay for care.

How does a Health Data Collective work?

Health Data Collectives pool anonymized medical data from individuals, researchers, and institutions to enable large-scale analysis. Participants share data voluntarily, promoting transparency and privacy.

1

Bring your data together in a ‘vault’

Securely encrypt data so your information stays yours.

2

Extract useful/necessary information from the data

You decide with whom to share your data.

3

Give pertinent care givers/groups access to your data

That could also include researchers or other ‘secondary’ users.

4

Reep the rewards of better personal care

And with that, improving the healthcare system and society as a whole

Additional Health Data Collectives around the world

Here are a few examples of Health Data Collectives that are currently operating around the world. We feel that putting the individual in control of their data is a key differentiator to building a sustainable health data collective.

MyKanta is a nationwide online service where you can view your health data 24/7.

Hailed as the world’s most advanced digital society. The innovative mindset is evident in the digitized services and solutions.

e-Nabız is an application that citizens and health professionals access to health data collected from health institutions via internet and mobile devices.

Discover and manage your medical information (with a comprehensive overview of your personal health data).

Want to learn more about Health Data Collectives or follow JLI’s progress on piloting new initiatives?  Register now.  

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