The Case for Patient-Controlled Data Sharing

Patient Privacy Rights leader Deborah Peel, M.D., recently penned a commentary attacking “myths” that personal health data is being acquired legally and ethically. Brian Baum, CEO at vitaTrackr Inc., which offers a platform for businesses to exchange patient-approved health data, counters that there is real value to patient data and that patients can have control over who gets it. Here is his response to Dr. Peel:

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Comments (4)
Hi Brian---PPR and the public have always supported using technology for health research with informed consent (electronic, simple, where each person can even set up rules to allow their health data to be used for research about specific diseases.

You missed my point. Of course everyone supports the benefits of technology---but you and industry ignore the massive harms from current HIT systems that eliminate privacy (patient control over PHI).

Please look at my blog about IMS Health Holdings' IPO filing with the SEC. The facts in the filing lay out massive illegal sales of the health data of 400M people: IMS buys and aggregates longitudinal data profiles on 400 million people from 100K data suppliers covering 780K daily data feeds. Did you know that? See: http://patientprivacyrights.org/2014/01/ims-health-files-ipo-legal/

IMS sells these very detailed profiles to 5K "clients", including the US government. It's obvious our data is being used, but what for?

Commoditizing the nation's health data is a tragedy of immense scope and incalculable harm. None of our data can ever be made private again, not even records of child abuse or cancer. This disaster is so far beyond crazy, it's truly insane. No one could humanly find and track his or her data held in 880K corporate data bases.

Please consider how we can build systems that prevent harms----Today 40-50 million people act to hide health information or delay/avoid treatment because they know they can't keep records private.

Can we afford terrible health IT systems that drive millions of people to put their health and live at risk?



This is hidden tsunami of sensitive personal data--your data.
Posted by DEBORAH P | Monday, January 27 2014 at 7:45PM ET
Thanks Deborah -

I appreciate your response. I suspect we could have a lively discussion sometime:)

Fundamentally, I'm certain we are very much on the same page. We both have an interest in "everyone" enjoying a healthy, happy life. Technology is opening up opportunities to move us further down the path of "best" outcomes AND more cost effectively than ever before. That is a tsunami that cannot be stopped. The use of personal health information in the delivery of care, optimizing outcomes and administering care within a cost context that our nation can afford will happen. Is it five years, ten years or fifty years out - we can all speculate. It will happen.

I spent part of my career in the telecom industry. A technological innovation was developed that allowed the number and identity of the caller to be identified to the called party. (Circa 1980s.) At the time, the concept of caller id provoked massive outcries. "This technology infringes on the rights of the calling party to privacy". Of course, in application, can anyone exist today without caller id? Certainly there is a generation that has no concept that it never existed.

I don't mean in any way to compare the sensitivity of health information with that of calling information. There is no comparison. My point, the use of health information offers far too many benefits in quality and longevity of life and cost efficiency for it to be ignored. Our choices are basic - ignore the inevitable, or as an industry develop an environment that facilitates the use of data - with personal approval, that provides the best protections of data and audit trails that map where data is moving so that we can all enjoy the benefits, with the protections. I've opted for the latter in the belief that it is better to foster a manageable solution than to allow piecemeal solutions to be born of necessity which will ultimately result in chaos. (Your example of IMS Health Holdings - a case in point.)

This is an industry-wide challenge; the industry has the responsibility to address it. I'd enjoy an opportunity to share with you more detail on what may be a solution and invite your input. I truly believe we seek the same end result.
Posted by Brian B | Tuesday, January 28 2014 at 9:22AM ET
As someone who has worked for commercial software companies and in a large IT organization, I do not feel at all comfortable trusting a hospital or other healthcare IT organization protecting my data. The main reason is that IT budgets are always sacrificed to the business budget, however in commercial software, software is the product and your user base is exponentially larger than an application built for by an IT organization for a business. The quality of security standards, design standards and testing standards can be very wide apart. So I believe that only a service dedicated to the patient and built by professionals focused ONLY on servicing the patient, is the best model. I personally am opting out of any IT based solution that wants to share my information. As someone who knows the difference in software solutions and having spent over 25 years in the business, I would not trust an organization whose charter is NOT software to protect my data. This is not their charter, it is something they need while the patient is in their four walls so they can bill and get paid, and if it works for the patient well and good, but it is not their primary focus.
Posted by Tamy L | Wednesday, January 29 2014 at 4:28PM ET
Tamy -

Thanks for the comment. The points you make are literally the basis for the company I've launched.

The premise is simple - data must be used more effectively in healthcare - to optimize the health of a given individual, across health conditions and across the population. This comes with a few conditions - first and foremost the individual consumer must open and close the gate to their information. If they don't want to share anything that is a right they should have. Furthermore, a given consumer should have ready access to an audit trail of data that is reported on them and where that data has been sent.

Whose responsibility is it to manage that flow and process? The 5000+ hospitals across the country? The hundred's of thousands of physicians? The 2000+ health plans? The manufacturers of health monitoring devices? The labs? The exploding number of mobile apps and devices? The federal government? Perhaps it is a side business for an organization like Microsoft - "Healthvault"? Perhaps a Verizon, a GE/Intel? How about the friendly EMR vendors?

The point - in healthcare we have total chaos relative to data. It is being created on individuals at an exponentially increasing rate. But there is no infrastructure to manage it, move it, protect it and where appropriate leverage it. This function is not a sideline activity. With all due respect to Microsoft and even Google - at least they both made an effort to do something - but you can't be a multi-billion dollar business that, oh btw - also manages the nation's health information.

The option is "do nothing" or finally get in front of this curve for the benefit and protection of all. That is our proposition and mission - create an entity with one single purpose of mission - moving data and protecting consumer rights relative to their data. We don't create data, analyze it, add value to it, we don't have a separate core business - we move and protect data. To your point - this single purpose of mission ensures that we are focused squarely on the best solution and platform to deliver on our mission.

Right now we are assembling a cross sector team of entities that will bring the vitaTrackr marketplace to market.

Independence is critical and essential to the marketplace. However, acceptance by the industry is equally important. We are assembling the entities that represent the thought leaders, the innovators across diverse industry sectors that recognize that this is an industry challenge and as such, may require working with some traditional competitors - for the good of the industry. It is a different approach for healthcare, but organization has allowed other industries to thrive. Check back in six months or so - but the opportunity, the stakes are simply too high to not address the more efficient use of data in healthcare.
Posted by Brian B | Thursday, January 30 2014 at 4:10PM ET
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