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Personal Health Records
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"I couldn't believe that all my medical decisions were being made by doctors who were basing it on my laboratory report. And yet, I didn't have a copy of that report or know what it said. Life and death decisions are based upon this report." (Source!)

  • Personal Health Records:can take on different forms (e.g. paper vs computer based) and permit different degrees of access by YOU or YOUR PROVIDER. Differences in access are not just caused by permission requirements and other legal facets, but also by reliability of computers, Internet links, clarity of organization of directories and file folder, the nature of organization and location of paper records or disks (e.g. shoe boxes in the basement versus well labeled and subdivided ringbinders in a readily accessible location, etc.).

    Simplifying the multitude of characteristics, we want to distinguish between these types of PHRs:

    1. Predominantly Paper-Based, physically distinct PHR (usually, but not necessarily, stored at home) Paper-based or digital PHRs or both?: Printed laboratory reports, copies of clinic notes, and health histories created by the individual may be parts of a paper-based PHR, organized, for example in a ring binder. It is low cost and accessible without a computer. Paper-based PHRs, however, may not be handy, such as when you are travelling, or difficult to share with other providers unless you bring your copies with you to an appointment or sign a release form to have records submitted beforehand. The same applies to digital records whenever computer or software compatibility or the granting of permission or access to passwords is an issue. In the best of cases, Internet-based PHR's are readily available practically anywhere on a secure website that can be accessed by the appropriate person. Paper records can also be printed from most electronic PHRs and added to the ringbinder. Paper-based PHRs, however, can be subject to physical loss (incl. by fire) but may be accessible (but also damaged) during a natural disaster when power or Internet access may be lost. Thus, paper/digital redundancy may be desirable!

    2. Digital (Computer or Internet based)
      1. On Home Computer
      2. On Provider's Computer (often called "Electronic Health Record")
        1. Accessible to Patient via Internet
        2. Accessible to other providers, but not to Patient
        3. Not accessible to other providers or patients
      3. "Cloud" based (e.g. MS Vault) "HealthVault's primary competitors are Google Health, Dossia and World Medical Card. Google announced in June 2011 that the Google Health will be discontinued as of January 1st, 2012, and has encouraged users to either download their data or to directly transfer it to Microsoft's HealthVault service before January 1st, 2013." [Wikipedia]

    [Other Resources: Wikipedia]

  • How to create a Personal Health Record or Portfolio

    Maintaining Your Own Health Records? (by Ursel Krumme, RN, MA, Wellness Resource Center)

    Many of us have found out the hard way that we can't assume that our medical providers are part of an efficient, well-connected health care "system". All too often, we have to prod the system along and make sure that our busy provider actually sends the records, as promised, to the next specialist before we meet. In addition, we want to secure our own copies of the lab results and appointment summaries, since we may need them for future providers, visits to the ER or an urgent care clinic, or for second opinions, to say nothing about our own need to be fully informed.

    The law in Washington for “Medical Records - Health Care Information Access“ since 1993 (RCW 70.02.080), says we have the right to receive copies of our personal health record upon a written request within fifteen working days ( Now, it should just be a matter of being diligent and overcoming our natural hesitation to request and then insist on actually receiving copies of reports such as:

    - blood and urinalysis results 
    - imaging reports (including discs): CT, MRI, ultrasound scans 
    - biopsy findings 
    - procedure/Operating Room reports 
    - discharge summaries from Hospital/Skilled Nursing Facility 
    This may be a labor-intensive process as diagnostic centers or clinics may have moved, closed or been re-organized or renamed. Providers will require you to complete a “Permission to Release Health Information Form“ and possibly charge for the copies. The reports can then be placed into a 3-hole binder with dividers organized around your health problems such as gastro-intestinal, heart, diabetes, gout, joint replacement etc. You can also now easily identify trends in your health status improvement by graphing findings over time (a service already provided by Group Health as part of members' online access to their records).

    As you are organizing your personal health binder, consider also completing the Port Ludlow Fire & Rescue’s “File of Life Medical Information Cards”, a magnetic form to place on your refrigerator -- which EMT’s look for when responding to “911” calls -- and a version for your wallet. It asks you to check all existing conditions and allergies, current medications, and location of advance directives.

    A very helpful video related to Personal Health Records (Lecture by UW Prof James Ralston) can be found under Model 2!

    Published in PL Voice, November 2011, p.10

  • Permission to Release Health Information Forms

  • Personal Health Information Organization

    • The Future of Personal Health Records [University of Wisconsin] One of the nation's few nurse-industrial engineers ... (is) leading an eight-year-long national effort to come up with a vision for personal health records that will go far beyond the current crop of ideas for helping people make decisions about their own health.

    • Usage Patterns of a Personal Health Record by Elderly and Disabled Users AMIA Annu Symp Proc. 2007; 2007: pp.409–413. Published online 2007. PMCID: PMC2655817
      Eung-Hun Kim,1 Anna Stolyar,2 William B. Lober,2,3 Anne L. Herbaugh,3 Sally E. Shinstrom,3 Brenda K. Zierler,2,3 Cheong B. Soh,4 and Yongmin Kim1
      1Bioengineering 2Medical Education and Biomedical Informatics 3Behavioral Nursing and Health Systems, University of Washington, Seattle, WA USA; 4Biomedical Engineering Research Centre, Nanyang Technological University, Singapore This is an Open Access article: verbatim copying and redistribution of this article are permitted in all media for any purpose

      Personal Health Records (PHRs) are increasingly recognized as a strategy to improve patient-provider communication, availability of health information, and quality of care, by making the delivery of care more patient-centered. However, not much is known about the effects of self-managing personal health information...

    • KFTF: Keeping Found Things Found [Univ. of Wash Information School] What is KFTF? Much of our lives is spent in the finding of things. Find a house or a car that's just right for you.... But, once found, what then? As with other things, so it is with our information. Finding is just the first step. How do we keep this information so that it's there later when we need it? How do we organize it in ways that make sense for us in the lives we want to lead?

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Last updated: February 2012 -- krumme(at)comcast(dot)net
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