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Nutrition Informatics Blog



Personal Health Record Roundtable - ONC

Yesterday I was fortunate to be able to attend the Office of the National Coordinators (ONC) Roundtable: Personal Health Records-Understanding the Evolving Landscape. This event launched en force the call for comments concerning Personal Health Records (PHRs) by ONC, which is due December 10, 2010.  By now you’ve probably picked up on the fact that I attend many of the ONC Proceedings—this was one of the best groups of panels I have seen.  The content was widely varied—but like any discussion, could not touch every aspect of PHRs.  It was very aptly held at the Federal Trade Commission, who on December 1, 2010 released the timely report: Protecting Consumer Privacy in an Era of Change

 Here is a broad summary of my thoughts from the roundtable:

  • Definition of Personal Health Record: While there is no shortage of definitions- MedlinePlus, Centers for Medicare and Medicaid Services, WebMD,Wikipedia, Center for Democracy and Technology—the main point is that the consumer/patient has access to the data to make important decisions about their own health care. 
  • HIPAA or Not?: Most health professionals use the term HIPAA (Health Information Portability and Accountability Act) synonymously with “privacy and security of health data.”  While this covers most EHR use situations, PHRs are a different story.  At present it is a tangled web and depends on how the PHR is used and by whom; the Federal Trade Commission holds the most control (if you use the term loosely)—much more needs to be fleshed out in this area.  
  • Landscape of PHRs: There are incongruent aspects of all areas of PHRs, and trying to understand the big picture is a bit like herding cats (my wording, not theirs.) There were multiple examples of potential and actual problems with patient/provider use of electronic health data.  This result is from a plethora of rapidly evolving mobile technologies and applications mixed in with different access and use of data, and inconsistent terms and regulations.

The point not to be lost is that there are many successful PHR models (Dossia, Kaiser Permanente, Active Health Management (Aetna), Google Health,) and “platforms” such as Health Vault that have be in place and working for patients—perhaps not in conjunction with their doctors—but it’s a start! This is of course, part of a path to consumers/patients becoming more engaged, involved, and active in their health care. 

Add a Comment
Comments (2):
12/16/2010 5:49:40 PM by Fred Buhr, MSSW

Hello Lindsey, As I looked through the comments on "PHRs and Non-Covered Entities" I saw your entry on behalf of the American Dietetic Association. You may recall back in August of this year, I commented on your Nutrition Informatics Blog that the privacy and security of the management information system utilized by Wisconsin in the administration of the Older Americans Act programs was the worst in the nation. The underlying cause is that the aging programs in Wisconsin operate in their own world under the assumption that because staff and administrators work hard and have the best of motivations, every administrative decision they make is the right one. The aging programs insulation from peer review and absence of oversight by any other administrative unit, has resulted in a total lack of understanding of nutrition informatics. Furthermore there is complete disregard of the privacy and security framework required by the Office of the National Coordinator (ONC) to assure trust of information sharing. In August 2010, I wrote a letter to Governor Jim Doyle requesting that he appoint a “special administrator” to take administrative control of the Bureau of Aging and Disability Resources (BADR) in the Department of Health Services (DHS). I sent the letter as hardcopy only to him, without copies to anyone else. I had hoped to go around BADR but was unsuccessful as our Governor requested that the administrator of the division where BADR is housed respond to me on his behalf. Susan Crowley, the administrator who answered my letter said, “If you wish to withdraw your record from the system, we would be happy to honor your request.” Her response validates my concern that the aging programs are not following state and federal law. Wisconsin has the strongest laws in the nation relating to records and her offer to withdraw my record from the Social Assistance Management System (SAMS), besides being an insult to me, is in violation of Wisconsin’s records laws. Because Wisconsin’s state government will not take my concerns seriously, I would like to raise the issues directly with the American Dietetic Association. Following are copies of original documents which I believe are evidence of bad practices – the worst of the worst bad practices in the nation.'s%20Contract%20for%20SAMS.pdf Best regards, Fred Fred Buhr, MSSW Metasteward LLC

12/21/2010 5:15:13 PM by Lindsey Hoggle

Dear Fred, The remarkable part of the world we have now is our ability to communicate with someone anytime anywhere. If I could raise a magic wand and remove your frustration, I would. The important caveat to all of the discussion on health care, and how we handle private health data, is that we have to collaborate to make it right--an "all hands on deck" approach to understanding what is needed. The ADA has consistently supported the need to comment and offer constructive suggestions to all components of the HITECH Act. Perhaps as more structure around "best practices" for health information technology and handling of health data evolve, we all will appreciate how best to reach good health through the use of health IT. My goal is to ensure we leave the next generation a sustainable, safe health care system. I can tell this is is likely your goal, also and hope each of us can contribute a positive step in that direction. Happy Holidays and best wishes to all those sharing our passion of improved health care.

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