Crowdsourcing the Future: Health 2.0 and HIPAA

Deven McGraw is the Director of the Health Privacy Project at the Center for Democracy & Technology. 


The Health 2.0 movement has seen incredible growth recently, with new tools and services continuously being released. Of course, Health 2.0 developers face a number of challenges when it comes to getting providers and patients to adopt new tools, including integrating into a health system that is still mostly paper-based. Another serious obstacle facing developers is how to interpret and, where appropriate, comply with the HIPAA privacy and security regulations. 

Questions abound when it comes to Health 2.0 and HIPAA, and it’s vital we get them answered, both for the sake of protecting users’ privacy and to ensure people are able to experience the full benefits of innovative Health 2.0 tools. We can’t afford to see the public’s trust in new health information technology put at risk, nor can we afford to have innovation stifled.

To help solve this problem, the Center for Democracy & Technology (CDT) has launched a crowdsourcing project to determine the most vexing Health 2.0/HIPAA questions.

This is where you come in:

How Should Fed HIT Dollars Be Spent? Cat vs. Dog POV.


“Where’s the single best place to get up to speed on how the Feds should  spend $20 billion to advance health information technology (HIT)?”

A colleague asked me this question a couple of days ago, and at first I hesitated.  Then it struck me — Matthew Holt’s The Health Care Blog has become the focal point for discussion of this critical topic.

Matthew’s very recent article — Cats & dogs: Can we find unity on health care IT change? — summarizes the two schools of thought that have emerged over the past two months.

His article is important and notable for a number of reasons:

  • He crystallizes the two emerging schools of thought — the dog vs. cat POV (see below)
  • He summarizes and links to many other key writings on the HIT spending topic
  • He suggests that the dog and cat POV can be reconciled — that there’s a middle road
  • He suggests several initial options to reconcile the differing schools of thought.  This discussion should continue.

If you’re interested in disease/care management, this is a topic you should be following closely. While the first decade of DM focused on a services based, call center model — the handwriting is on the wall that the next decade will focus much more on a technology based model.

Companies and organizations involved in disease/care management should be positioning themselves to take direct and indirect advantage of the Federal injection of funds.

Here’s Matthew Holt’s summary of the dog vs. cat perspectives:

Health Wonk Review — The “Just the Facts, Ma’am” Edition

Hector-dragnet The story you are about to read is true. The names have been changed to protect the innocent.

This is the city: Los Angeles, California. I work here. I carry a badge blog. My name’s Friday.

Click here (short) or here (long) for Dragnet theme music.

A crime of disorderly conduct has been committed. The U.S. health care system is the prime suspect. My partner Gannon and I will investigate.

Search Engines Using Your Personal Health Information: Creepy or Cutting Edge?

When using a search engine, should results be customized based on your personal health information (PHI)?  Should your search engine of choice take into account your previous history of medical searches, or even provide results tailored from data about your personal medical history?

Two companies — Aetna and Microsoft — have come up with 180 degree different answers.

In this post, I will:

  • Describe how Aetna’s and Microsoft’s approaches differ
  • Speculate on why their approaches make strategic sense for the respective companies
  • Explore how technology and expectations about using PHI for search are likely to change over time

Aetna’s SmartSource and Microsoft HealthVault 

Aetna has adopted a more aggressive strategy of using your PHI to improve search results. Microsoft HealthVault is employing a much more cautious strategy and (for now) has pledged NOT to use personalized health information to target health search.

Aetna is a health insurance plan with an existing member base of 17 million members.  Aetna’s recent press release announced a partnership with Healthline introducing

Aetna SmartSource, the first-ever personalized search engine that mines information from Aetna’s vast data resources to deliver meaningful, personalized health and health benefits information to Aetna members. 

Based on existing medical claims data that Aetna already has about members, your search term will be matched against your own medical history to provide the most relevant results.

Microsoft HealthVault search is different.  From the Microsoft HealthVault Fact Sheet:

Microsoft does not link users’ personal information with HealthVault search queries.

Why the Difference?

Birth Announcement: the Personal Health Information Network (PHIN)

Vince Kuraitis and David C. Kibbe, MD MBA 

The Internet and digital technologies have transformed many aspects of our lives over the past twenty years.  We can get cash at ATMs all over the world; we can book our own airline reservations; we can shop and get best prices over the Internet.

Why hasn’t this happened in health care?  Something is missing.

Recently, major global information and communication companies have announced their intention to bring their technologies and business models to health care.  While the creation of Google Health (GH), Microsoft HealthVault (HV), and Dossia (sponsors include Intel, Wal-Mart, AT&T) are important news items by themselves, what’s more important is what they represent collectively — a new Personal Health Information Network (PHIN). The PHIN and applications developed around the PHIN will fill in many missing pieces and bring health care into the Information Age.

For example, suppose you just found out you have high blood pressure – that’s not uncommon.  Suppose you could easily submit information about your condition using the Google Health platform to receive a service that does the following:

  • informs you whether there are clues in your medical history that point to a cause for your high blood pressure
  • explains why being overweight can be a contributing factor
  • tells you in easy-to understand language what the top number and the bottom number mean (“140 over 90”)
  • explains which laboratory tests are necessary
  • alerts you to the possibility that one of your prescription or over the counter  drugs could be making your high blood pressure worse
  • advises you about the usefulness of using non-drug approaches to treatment
  • tells you which treatment drugs have the greatest efficacy and safety for your specific circumstances
  • tells you if any of those generics high blood pressure drugs are available at Walgreens for $4 a month
  • offers to provide you a map with several Walgreens stores in your city that carry those $4 a month medications

…and many more possibilities we have not yet begun to imagine!

This essay:

  • Is the first in a series of articles we’ll be writing to describe the PHIN and why it’s important — expect about a dozen follow-up posts.
  • Is an overview of the basic idea — think executive summary or long abstract
  • Introduces some new concepts, which we’ll try to simplify and define.  We understand that some of this is not easy reading. ….so we suggest you refill your cup of coffee and settle in.

Health 2.0 Deserves Careful Watching

by David C. Kibbe, MD MBA

Dear Colleagues:

Thursday I attended a wonderful one day conference, entitled “Health 2.0 — User Generated Health Care.” One of the most interesting events of 2007. Held in San Francisco. I had a chance to talk with Adam Bosworth and Missy Krasner of Google, with Peter Neuport of Microsoft, and with David Brailer, among many others. It was particularly good to see Drs. Walter Lim and Rick Chan, with the Ministry of Health in Singapore, who came all the way from Singapore for the event. I was on the final reactor panel with Esther Dyson, Lee Shapiro of Allscripts, and Jay Silverstein of Revolution Health, representing the American Academy of Family Physicians (AAFP).

How to describe this event?

Ruminations on the 2007 Healthcare Unbound Conference

Although a bit late, I’d like to share perspectives from the latest Healthcare Unbound conference. The conference took place in San Francisco on July 16 and 17 and attracted 400 attendees with a rich blend of business, information technology, and clinical backgrounds.

PowerPoint from Opening Keynote

Here’s a copy of the PowerPoint for my opening keynote presentation. My colleague and fellow blogger Tim Gee did a great job summarizing key points on his blog.  THANKS, Tim.

In a nutshell, my main theme is that the adoption of Healthcare Unbound technologies is becoming increasingly dependent upon adoption of broader health information technology (HIT) standards for interoperability and transportability of personal health information.  We should view the Healthcare Unbound ecosystem as highly interdependent — a crew team rowing in harmony rather than a bunch of kayakers in sleek craft that are independently powered and steered.

Major Takeaways from the Conference

Here are some of my key take away points from the conference:

Free at Last, Free at Last — “Health 2.0″ is Free at Last!

Bravo, cheers and congratulations to fellow blogger and consultant Matthew Holt.  In a stroke of defiance and brilliance, he has trademarked the term “Health 2.0” and made it available for all to use (presumably except for events that might be confused with his upcoming Health 2.0 conference).  From The Health Care Blog:

Yes I’ve trademarked Health2.0. No, I will not stop anyone using it. I’ll be giving control over the trademark to the collective advisory board for the Health2.0 Conference. All I want to make sure is that no one uses the trademark offensively (pun intended) as for instance has happened with the term eRx.

Why did Matthew obtain the trademark for Health 2.0 only to give it back to all of us?