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9/17/2013
02:56 PM
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Feds Seek To Educate Patients On Info Sharing

U.S. Department of Health and Human Services offers guidelines and open-source software that healthcare institutions can use to help patients understand what they are agreeing to.

7 Portals Powering Patient Engagement
7 Portals Powering Patient Engagement
(click image for larger view and for slideshow)
Using a combination of guidelines and open-source software, the U.S. Department of Health and Human Services is trying to encourage healthcare organizations to obtain "meaningful consent" as part of the process of sharing patient information online.

Although the government's bigger push has been for "meaningful use" of electronic health records and the creation of state and regional health information exchanges (HIEs) for sharing those records between institutions, these innovations also raise questions about giving patients more control over how and with whom their information is shared. As defined by the HHS Office of the National Coordinator for Health Information Technology (ONC), meaningful consent means giving patients more options, along with education on what those options mean. A patient might elect not to have their data shared or only allow sharing under specific circumstances, such as a medical emergency.

The eConsent Toolkit announced Tuesday is derived from a pilot project in Western New York state that wrapped up in March, which looked at the use of tablets for interactive education and also as a means for patients to record their choice from among the options offered.

[ Patients want complete access to -- and the option to edit -- their medical records online. Read Patients Seek More Online Access To Medical Records. ]

As explained in a post on the Health Affairs blog, "The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule generally permits, but does not require, covered health care providers to give patients the choice as to whether their health information may be disclosed" -- although states have the ability to make their own privacy rules. The HHS guidelines also talk about the distinction between opt-in rules, where patients must make an affirmative choice to allow sharing, and opt-out rules, where data will be shared unless the patient specifically objects. Although opt-in would do more to protect patient privacy, the published guidelines don't express a preference for one over the other.

What HHS is sharing is a toolkit that providers and HIEs can use as a starting point for developing a meaningful consent program. In addition to a set of guidelines and sample videos for patient education, ONC is releasing an open-source software product called the eConsent Story Engine, which can be used to deliver interactive presentations on different scenarios so patients understand the circumstances in which their information might be shared. The same software can then be used to record their consent, including an electronic signature.

Based on the New York trial, ONC learned that patients wanted to learn more before being asked to make a choice on whether to consent to the sharing of their information. However, patients -- and computer users in general -- will often click OK on a form asking their consent to a long list of terms and conditions without really reading it or understanding it. The point of the interactive software is to make the choice meaningful. The designers of the program tried to present the information in a more interactive, engaging, and clear way before displaying the screen with consent options.

"As patients become more engaged in their health care, it's vitally important that they understand more about various aspects of their choices when it relates to sharing their health in the electronic health information exchange environment," said Joy Pritts, ONC's chief privacy officer, in a statement for the press release.

Follow David F. Carr on Twitter @davidfcarr or Google+. His book Social Collaboration For Dummies is scheduled for release in October 2013.

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Alex Kane Rudansky
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Alex Kane Rudansky,
User Rank: Apprentice
9/20/2013 | 5:01:42 PM
re: Feds Seek To Educate Patients On Info Sharing
Does this have any connection to Blue Button? (http://www.healthit.gov/bluebu...
David F. Carr
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David F. Carr,
User Rank: Apprentice
9/18/2013 | 3:03:17 PM
re: Feds Seek To Educate Patients On Info Sharing
So you think this is all a fantasy?
David F. Carr
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David F. Carr,
User Rank: Apprentice
9/18/2013 | 3:00:04 PM
re: Feds Seek To Educate Patients On Info Sharing
I certainly wondered how many patients will take the time to view all the videos. Could be a way to kill time in the waiting room I guess. Also interesting that the HHS team thought it needed to construct a whole specialized content management system for this purpose.
MedicalQuack
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MedicalQuack,
User Rank: Apprentice
9/18/2013 | 3:12:55 AM
re: Feds Seek To Educate Patients On Info Sharing
This is going to be fun as HHS, even at the top of the helm thinks software solves everything and plus not only that is they are not very good role models and the attitude of "its for those guys over there" permeates but I have saying that and posting on my blog about it here and there and they don't care:)

Should we go back to doctors telling patients about getting a PHR too? Unless it is in a closed network not owned by an insurance company like Kaiser then they don't do it. Once upon a time and it was like pulling teeth I finally on Twitter got a couple of them to admit which PHR these use and so from there I just the rest don't use one and talk about it all the time as one thing I have found when folks don't want to reach out and help they usually themselves are "non participants" in the technology, hasn't failed me yet:)

I understand what the process here is for meaningful use and patients are losing their patience if you will. They know HIPAA is out there but then ask why does Walgreens or CVS share my prescription data, and then they get the answer and say why is it not covered by HIPAA so roll this in here too and sure it's hard. If they happen to roll over to my blog too then they know almost all the consumer devices are selling their data as well as the insurers so add this in on consent..it's a tough one but software won't solve it completely..human element called education on what they are signing needed...reading it is not enough in view of what else I outlined.

Back when I was developing stepping out in to the real world was something I learned as well as my perception and those of end users could be very different and after a couple knocks, with real life patients and not a survey, it kicked in so I realized too that I needed to be that role model as well and talk with people as they function and perceive in real life...took kit...well good luck:)
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