This page covers the importance of health care data privacy, how it can protected, and how data privacy can ensure reformation and advancement of U.S. health care.
Data Privacy in Health Care
The following comments are from Tom Coleman, president of the Imperative Foundation.
AI, Health Care, And Personal Data
Biological, medical, family history, and other detailed personal data have a critical role in the development of AI for health care. AI is trained on data. AI needs our personal data including that of our DNA, to understand the minute details of human biology relative to diseases and conditions that impair our lives and to advance medical technology and increase the quality of health care
By acquiring this data, AI can create the knowledge necessary to cure and better treat diseases that impact human life and mitigate future pandemics. The knowledge that comes from our DNA, will assist in creating cures for presently incurable diseases such as autoimmune diseases (diabetes, lupus, arthritis…) and many others.
The knowledge AI generates from our personal data, will benefit the lives of all peoples.
Data Privacy, The PPP, And AI
It is imperative that we make our personal biological data and medical history data available to the public private partnership (PPP). However, we as citizens, set the terms.
The following represents an initial draft of core terms for data privacy:
- Each individual permanently owns all their biological, medical history, and other health care related data.
- All personal data is held by the public private partnership (PPP).
- All personal data is kept safe on the PPP’s servers only.
- All personal information utilized by third parties is anonymized; no individual identities are known by users of the data.
- Data and knowledge provided to a research or corporate participant in the PPP, is for a specific purpose and time.
- AI only has access to and learns from anonymized personal data.
- In specific instances, where an individual’s biological profile is highly unique and important for research, the person or their heirs, can give permission to use the data for a specific purpose and time that is agreed to prior to the use of the data. If the that individual’s biological data leads to a medical product, the individual shall receive fair compensation (this is to avoid what befell Henrietta Lacks (link) in 1951.)
- Products, services, and applications developed from the personal data must meet criteria for efficacy, cost, and increasing the quality and delivery of health care.
The Broader Trade
As citizens, our trade with the PPP and AI is for:
- A reformed health care system.
- Higher quality and delivery of health care.
- Substantially lower costs.
- The preservation of Medicare and Medicaid.
- Transition to universal health care.
Background
Before the consumer internet emerged in the 1990s, from personal experiences, including those of board member of an early-stage information company, I recognized that in a connected world, an individual’s personal profile was highly valuable to companies marketing consumer products and services, and advertising agencies.
As the internet developed, the largest and highly profitable business model – was and remains – the collection of consumer data to create individualized consumer profiles for utilization in advertising, sales, and marketing. Google, Meta/Facebook, and Amazon now represent 64% of global digital advertising that is based upon the use of consumer data.
Google, Meta, Amazon, and Microsoft, directly and through their investments, also represent the largest companies actively pursuing the development of AI.
Failure To Protect Data Privacy
The broad collection and monetization of personal data is the result of congress’ failure to act to protect the personal data of U.S. citizens and a demonstration of the power of the lobbying groups that act on behalf of companies collecting, monetizing, and selling the personal data of citizens.
It’s Mine Not Yours
In 2001, I wrote a short book on data privacy. The title of the book was “Its Mine Not Yours.” The objectives of the book were to provide consumers with information on data privacy, determine if data privacy was of value to consumers, and if protection of data privacy was a supportable business model.
Over a period of five weeks, I did 46 interviews on radio stations of all genres: talk, conservative, rock, country, liberal, and religious. The last radio interview was on the morning of 9-11, as the World Trade Center was being attacked.
From the radio interviews and listener participation segments., it was overwhelming clear that consumers wanted protection of their data privacy.
In the years since, our personal data has been severely exploited for commercial interests. We cannot let it happen to our health care personal information.