By Don Peppers and Martha Rogers, Ph.D.

A recent study conducted by privacy research guru Dr. Alan F. Westin and Harris Interactive concluded, to nobody's surprise, that the safeguards included in the Health Insurance Portability and Accountability Act (HIPAA) have become something of a roadblock for those hoping to use health data for research purposes. Indeed, the report revealed a significant amount of mistrust, with 58 percent of respondents saying that the privacy of personal health information is not protected well enough.

Given his prominence in the health information/privacy debate -- he holds the titles of Professor of Public Law and Government Emeritus at Columbia University and Director, Health Privacy Program at the Privacy Consulting Group-- Westin's main goal in conducting the research was to get a big-picture take on the public's attitudes about the use of personal health information in health research, especially in the era of electronic health records. At the same time, the study also prompted him to pay closer attention to the societal and marketplace costs of privacy.

What he concludes is that there are significant costs -- especially if, prompted by worries about the sanctity of health data, people hesitate to allow their personal information to be used in research. "One's health condition and status is a major factor in privacy/confidentiality, and a major motivator behind behavior," Westin says. "For mental-health services or sexual-related health conditions in particular, people have a deep hesitation [about sharing their information]."

This tension underscores a larger issue that looms -- the societal and marketplace costs of privacy. Nowhere is that tension more clear than in the recent debates about targeted behavioral marketing of ads tailored to users. The reality is that online advertising is symbiotic with online content. Without the ads, the content that users have come to want and rely on would be less plentiful and reliable. While the debate continues about placing limits on targeted behavioral marketing, one aspect of the discussion should focus on the potential impact on the abundance of free content.  

Indeed, Westin points to worries about potential discrimination as a primary reason for that hesitation. "The concern over privacy is very often a concern that somebody who has a health condition will either be denied certain benefits from employers, insurers or the government, or be asked to pay a much higher price for them," he explains. "That alone might prompt somebody to keep all of his information private. If enough people feel that way, the research could be diminished."

Fred Cate, a Professor at the Indiana University School of Law-Bloomington and Director of the Indiana University Center for Applied Cybersecurity Research, describes the market and societal costs of privacy as "huge and getting bigger." By way of example, he points to the movement toward more personal medicine. Testing therapies to treat a specific, narrow group of patients becomes nearly impossible when a large percentage of the population opts out of research due to privacy worries.

"Instead of drugs for everybody, you're seeing them just for a certain subset of people -- just for a certain genotype," Cate explains. "If the total population of people who will use that therapy is 10,000, a study size might be 1,000. If 20 percent of the people say no, that study is doomed. You need the increased participation, which you'll only see if the privacy and security houses are in order."

"The sky's not falling yet, but it will in the future if we don't start thinking about these things," he adds.

So how does Westin propose moving forward? In his mind, what the American public will demand before allowing their health and medical records to be used in research is clear notice as to what kind of research project is being conducted and who's doing the research. The migration of health records to electronic formats could muddy the waters, he notes. "The American healthcare community will want to develop ways to use large data sets for the kind of research that hasn't been possible so far, because no one place had enough medical records that could be massaged and used."

Will there be privacy concerns? Of course, but Westin believes that a consent-based system and explicit communication about privacy will ultimately overcome them. As per his study, consumers tend to trust their providers and academics more than they do any for-profit organization. The promise and delivery of prominent data security will be more essential for the latter group; without it, voluntary participation in health research is pretty much dead in the water.

"When the [personal health] information can be accessed with all the right safeguards from the privacy standpoint, it could lead to breakthroughs in research, and fast," he explains. "What we have to figure out is how we can do breakthrough research without people feeling that they've lost control or that their information is being used for private profit. So the price tag for that, especially for for-profit groups, is going to be the development of those strong privacy practices and protections."

Cate, on the other hand, predicts a move away from consent-based research, which he describes as "kind of unworkable, if you're going to try and look at 500,000 already de-identified [medical] records." He believes that the public and the medical community will eventually decide that it's more important to save lives than to protect health data that is already not personally identifiable.

The key here is to use individual information that has been scrupulously de-identified, including all relevant information about each patient in a study. Then we don't have to choose between research that saves lives but violates privacy and failure to conduct potentially life-saving research to protect privacy. Here's the question: Can putting into place an appropriate system that includes scrupulous privacy safeguards change the public's attitude and instill the trust necessary for people to feel comfortable allowing their health data (but not their names) to be used for research purposes?

You can reach Don Peppers and Martha Rogers at dpeppers@1to1.com or rogers@1to1.com


If you want to comment on this post, you need to login.


Board of Directors

See the esteemed group of leaders shaping the future of the IAPP.

Contact Us

Need someone to talk to? We’re here for you.

IAPP Staff

Looking for someone specific? Visit the staff directory.

Learn more about the IAPP»

Daily Dashboard

The day’s top stories from around the world

Privacy Perspectives

Where the real conversations in privacy happen

The Privacy Advisor

Original reporting and feature articles on the latest privacy developments

Privacy Tracker

Alerts and legal analysis of legislative trends

Privacy Tech

Exploring the technology of privacy

Canada Dashboard Digest

A roundup of the top Canadian privacy news

Europe Data Protection Digest

A roundup of the top European data protection news

Asia-Pacific Dashboard Digest

A roundup of the top privacy news from the Asia-Pacific region

Latin America Dashboard Digest

A roundup of the top privacy news from Latin America

IAPP Westin Research Center

Original works. Groundbreaking research. Emerging scholars.

Get more News »

Find a KnowledgeNet Chapter Near You

Network and talk privacy at IAPP KnowledgeNet meetings, taking place worldwide.

Women Leading Privacy

Events, volunteer opportunities and more designed to help you give and get career support and expand your network.

IAPP Job Board

Looking for a new challenge, or need to hire your next privacy pro? The IAPP Job Board is the answer.

Join the Privacy List

Have ideas? Need advice? Subscribe to the Privacy List. It’s crowdsourcing, with an exceptional crowd.

Find more ways to Connect »

Find a Privacy Training Class

Two-day privacy training classes are held around the world. See the complete schedule now.

Online Privacy Training

Build your knowledge. The privacy know-how you need is just a click away.

The Training Post—Can’t-Miss Training Updates

Subscribe now to get the latest alerts on training opportunities around the world.

New Web Conferences Added!

See our list of upcoming web conferences. Just log on, listen in and learn!

Train Your Staff

Get your team up to speed on privacy by bringing IAPP training to your organization.

Learn more »

CIPP Certification

The global standard for the go-to person for privacy laws, regulations and frameworks

CIPM Certification

The first and only privacy certification for professionals who manage day-to-day operations

CIPT Certification

The industry benchmark for IT professionals worldwide to validate their knowledge of privacy requirements

Certify Your Staff

Find out how you can bring the world’s only globally recognized privacy certification to a group in your organization.

Learn more about IAPP certification »

Get Close-up

Looking for tools and info on a hot topic? Our close-up pages organize it for you in one easy-to-find place.

Where's Your DPA?

Our interactive DPA locator helps you find data protection authorities and summary of law by country.

IAPP Westin Research Center

See the latest original research from the IAPP Westin fellows.

Looking for Certification Study Resources?

Find out what you need to prepare for your exams

More Resources »

GDPR Comprehensive: Spots Going Fast

With the top minds in the field leading this exceptional program, it's no wonder it's filling quickly. Register now to secure your spot.

Be Part of Something Big: Join the Summit

Registration is open for the Global Privacy Summit 2016. Discounted early bird rates available for a short time, register today!

Data Protection Intensive Returns to London

Registration is now open for the IAPP Europe Data Protection Intensive in London. Check out the program!

P.S.R. Call for Speakers Open!

P.S.R. is THE privacy + cloud security event of the year, and you can take a leading role. Propose a session for this year's program.

Sponsor an Event

Increase visibility for your organization—check out sponsorship opportunities today.

Exhibit at an Event

Put your brand in front of the largest gatherings of privacy pros in the world. Learn more.

More Conferences »

Become a Member

Start taking advantage of the many IAPP member benefits today

Corporate Members

See our list of high-profile corporate members—and find out why you should become one, too

Renew Your Membership

Don’t miss out for a minute—continue accessing your benefits

Join the IAPP»