Comments on: Sharks, Bees, and Health Privacy Paranoia http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/ Tue, 18 Jun 2013 00:53:11 +0000 hourly 1 By: Principles of patient access in Directed Exchange - O'Reilly Radar http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/comment-page-1/#comment-27511 Principles of patient access in Directed Exchange - O'Reilly Radar Fri, 24 Aug 2012 19:22:45 +0000 http://www.jopm.org/?p=1883#comment-27511 [...] push model are excited about directed exchange. Without getting into the debate, I can posit that there are some cases where push access to patient data is critical. Without supporting patient participation in directed exchange we regulate patients to second-class [...] [...] push model are excited about directed exchange. Without getting into the debate, I can posit that there are some cases where push access to patient data is critical. Without supporting patient participation in directed exchange we regulate patients to second-class [...]

]]> By: Principles of patient access in Directed Exchange | Share Blog http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/comment-page-1/#comment-25966 Principles of patient access in Directed Exchange | Share Blog Sun, 06 May 2012 22:10:25 +0000 http://www.jopm.org/?p=1883#comment-25966 [...] push model are excited about directed exchange. Without getting into the debate, I can posit that there are some cases where push access to patient data is critical. Without supporting patient participation in directed exchange we regulate patients to second-class [...] [...] push model are excited about directed exchange. Without getting into the debate, I can posit that there are some cases where push access to patient data is critical. Without supporting patient participation in directed exchange we regulate patients to second-class [...]

]]> By: Kathleen O'Malley http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/comment-page-1/#comment-16809 Kathleen O'Malley Wed, 28 Sep 2011 14:46:53 +0000 http://www.jopm.org/?p=1883#comment-16809 Note from the editors: When this article first appeared, the author's "cc the patient" email address was incorrect. We have corrected the error. Note from the editors: When this article first appeared, the author’s “cc the patient” email address was incorrect. We have corrected the error.

]]> By: pinboard July 21, 2011 — arghh.net http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/comment-page-1/#comment-12476 pinboard July 21, 2011 — arghh.net Thu, 21 Jul 2011 17:36:15 +0000 http://www.jopm.org/?p=1883#comment-12476 [...] Sharks, Bees, and Health Privacy Paranoia | Journal of Participatory Medicine Good perspective: Sharks, Bees, and Health Privacy Paranoia [...] [...] Sharks, Bees, and Health Privacy Paranoia | Journal of Participatory Medicine Good perspective: Sharks, Bees, and Health Privacy Paranoia [...]

]]> By: Ana Paula Miguel Hyde http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/comment-page-1/#comment-11907 Ana Paula Miguel Hyde Thu, 07 Jul 2011 21:42:37 +0000 http://www.jopm.org/?p=1883#comment-11907 So many times I have felt my privacy has been abused and my medical information misused, especially when I had an insurance/pension claim and the company got hold of my medical records (I had to sign release in order for claim to proceed). As my later mother used to say, "You go to jail for having a dog or for not having a dog." Either way they won't pay out. --Paula So many times I have felt my privacy has been abused and my medical information misused, especially when I had an insurance/pension claim and the company got hold of my medical records (I had to sign release in order for claim to proceed). As my later mother used to say, “You go to jail for having a dog or for not having a dog.” Either way they won’t pay out. –Paula

]]> By: Fred Trotter » Blog Archive » Sharks, Bees and Privacy http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/comment-page-1/#comment-11850 Fred Trotter » Blog Archive » Sharks, Bees and Privacy Wed, 06 Jul 2011 02:27:15 +0000 http://www.jopm.org/?p=1883#comment-11850 [...] http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/ [...] [...] http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/ [...]

]]> By: Adrian Gropper, MD http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/comment-page-1/#comment-11849 Adrian Gropper, MD Wed, 06 Jul 2011 01:54:15 +0000 http://www.jopm.org/?p=1883#comment-11849 Thank you, Fred for a fresh and valuable perspective on health information exchange. I agree with your overall conclusion and with the importance of Direct Project to patients but I take issue with two things: 1 - Direct Project does not specify the use of a human readable format such as Blue Button files. Even as we advocate for offering patients a copy, via Direct, of any extramural transmission, we should also advocate for a Blue Button file or PDF in order to enable the users to actually catch the error when the message is encoded in various ways. 2 - I think you give too much credit to IHE. Experts such as Adam Bosworth speak eloquently of the failure of complex standards in the marketplace and PCAST went out its way to reject the health information exchange architecture promoted by IHE. The practical, scalable and patient-friendly Health Internet we all hope-for is unlikely to be based on the complex and obsolete foundation of IHE. SPM should propose: - that all extramural transmissions of health data also notify the patient via non-specific regular email (like the phone co does when they auto-deduct a payment) and, - if the patient has a Direct Project email address, then the email must include a human-readable representation of the information, and - the email must include a secure Direct Project email address where the patient can report errors or dispute findings. Adrian Thank you, Fred for a fresh and valuable perspective on health information exchange.

I agree with your overall conclusion and with the importance of Direct Project to patients but I take issue with two things:

1 – Direct Project does not specify the use of a human readable format such as Blue Button files. Even as we advocate for offering patients a copy, via Direct, of any extramural transmission, we should also advocate for a Blue Button file or PDF in order to enable the users to actually catch the error when the message is encoded in various ways.

2 – I think you give too much credit to IHE. Experts such as Adam Bosworth speak eloquently of the failure of complex standards in the marketplace and PCAST went out its way to reject the health information exchange architecture promoted by IHE. The practical, scalable and patient-friendly Health Internet we all hope-for is unlikely to be based on the complex and obsolete foundation of IHE.

SPM should propose:
- that all extramural transmissions of health data also notify the patient via non-specific regular email (like the phone co does when they auto-deduct a payment) and,
- if the patient has a Direct Project email address, then the email must include a human-readable representation of the information, and
- the email must include a secure Direct Project email address where the patient can report errors or dispute findings.

Adrian

]]> By: E. J. Cardno http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/comment-page-1/#comment-11848 E. J. Cardno Tue, 05 Jul 2011 22:05:54 +0000 http://www.jopm.org/?p=1883#comment-11848 An excellent and extreamely important critique. I do hope that those in positions of authority and decision making are listening - reading. The health record has always been an instrument to enhance care and treatment and while originally larely compiled by the physician it is the patient's information and they ultimately know wether the content is accurate and complete. Time to build on this interactive knowledge and validity process. An excellent and extreamely important critique. I do hope that those in positions of authority and decision making are listening – reading. The health record has always been an instrument to enhance care and treatment and while originally larely compiled by the physician it is the patient’s information and they ultimately know wether the content is accurate and complete. Time to build on this interactive knowledge and validity process.

]]> By: paul bearmon http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/comment-page-1/#comment-11847 paul bearmon Tue, 05 Jul 2011 22:00:12 +0000 http://www.jopm.org/?p=1883#comment-11847 "That is really not very important. For the most part, transfers that happen without our permission will still be in our interests..." This strikes me as naive and the attitude of someone who doesn't understand why privacy is key. Lack of privacy can be devastating. Data can be corrected. Once medical information is in the wrong hands it can't be taken back. “That is really not very important. For the most part, transfers that happen without our permission will still be in our interests…”

This strikes me as naive and the attitude of someone who doesn’t understand why privacy is key. Lack of privacy can be devastating. Data can be corrected. Once medical information is in the wrong hands it can’t be taken back.

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