Personal Health Records: Legal-Institutional Constraints

A colleague of mine from my USC days, Guillermo Asper y Valdés, was in Oxford last week for a visit – but asking about UK research on personal health records. He and colleagues in Brazil and the US are undertaking research in this area. If anyone has suggestions of individuals he should contact, please let me know. I think they are interested in the whole range of issues surrounding the development and use of personal health records in the provision of more direct health and medical services. However, they want to understand leading-edge developments cross-nationally in order to contribute to the design of systems in this area. Any thoughts would be appreciated. My own contribution was to note the importance of focusing on the legal-institutional constraints surrounding the development of these systems, and not have too great a focus on the technological breakthroughs.

Guillermo Asper y Valdés and Bill

8 thoughts on “Personal Health Records: Legal-Institutional Constraints

  1. I teach at University of Brasilia, FACE/ADM and became interested in PHR during my post-doc days at University of Southern California Marshall School of Business, IOM. Indeed there are several very large organizations that have been using PHR for several years now, that raise my interest learning from their experiences. And of course the largest of them all is NHS as it a service for a population of 60 million people.

    Usually the overall patient interaction with his/her medical record is usually mediated by the GP (General Practitioner). That is a human interaction named countertop computing, (see unpublished 1989 USC -GJAV dissertation), as it has the three components of that kind of interaction: a) the subject (the physician), b) the object (the patient) and c) the mediator (the Countertop computer).

    never-the-less there is an ongoing innovation that would allow for those british patients that are within the early adopter area to have access to their medical records: http://www.nhscarerecords.nhs.uk/

    the six Primary Care Trust (PCT) areas are listed in the following link

    http://www.connectingforhealth.nhs.uk/systemsandservices/scr/staff/aboutscr/early

    and here two casestudies on the implementation: the Bury and the Brdford experiences see links below

    http://www.connectingforhealth.nhs.uk/systemsandservices/scr/documents/bradford.pdf

    http://www.connectingforhealth.nhs.uk/systemsandservices/scr/documents/buryexperience.pdf

    HealthSpace is the name for that service has at NHS see link the following link. So besides those 6 experimental areas were Summary Care Record are directly accessible by the user, there is also a choice to book medical appointment online. I have colleagues in the USA that are users of Kaiser Permanent’s MyHealthManager as the PHR service is called at Kaiser and that seems a very popular application for Kaiser members as some 30% are using it according to Kaiser Permanente 2008 annual report. http://xnet.kp.org/newscenter/annualreport/connectivity/index.html

    The following is the link to healthspace in case you want visiting it
    https://www.healthspace.nhs.uk/visitor/visitor_carerecord.aspx

    Regarding Summary Care Record (SCR) …NHS says that it contains important information taken from the electronic medical records that the NHS holds for you. The information could help people treating you, particularly in an emergency. So here clearly shows that SCR and EMR (Electronic Medical Records also known as EHR or Electronic Health Records), although related to PHR are clearly considered separate things.

    According to what I’ve know so far SCR feature is limited to 6 locations. But at the same time Any user of NHS may request and obtain access to his/her medical records usually in 21 days or at a maximum of 40 (as determined by the law) see the following link for that
    http://www.nhs.uk/chq/Pages/1309.aspx?CategoryID=68&SubCategoryID=160

    And how to book an appointment online? http://www.chooseandbook.nhs.uk/patients/patpres.pdf

    Indeed legal institutional constraints are relevant, but that does not means that PHR is free of technological constraints as it is a very critical, as critical as survival and wellness is for any of us and its span of potential users is ever so large.

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  2. Dear Prof Dutton,
    It´s very important to us your comments about the Guillermo´s research.
    Thank you,
    Eduardo Raupp de Vargas
    Head of Management Department at University of Brasilia

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  3. The Summary Care Record appears to be similar to the Continuity of Care Record being used in the US to exchange patient data. I don’t know enough about the SCR to say whether or not it’s very useful to the patient, i.e., is the information it contains understandable to the patient, does it help patients make wise decisions about their care, does it help patient take better care of themselves and deal with personal problems, etc.? Those are the kinds of things an effective PHR ought to do.

    I also have concerns about storing patients’ sensitive identifiable health data in a central database that is owned by anyone other than their personal healthcare providers. Tools such as MS Health Vault and Google Health, for example, have security issues. Greater security can be achieved by storing each patient’s data in an encrypted data file, which can only be opened (decrypted) with the patient’s authorization, preferably using a biometric index (e.g., a retinal scan or thumb print).

    Nevertheless, I firmly agree that patients should have direct access to their health data—especially if it is truly useful to them—and they should be able to control who gets to see it.

    Keep up the good work!

    Steve Beller, PhD
    http://curinghealthcare.blogspot.com/
    http://wellness.wikispaces.com/

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  4. This comparison is a very good idea. In the USA The Centers for Medicaid and Medicare (CMS) report that about 100 million Americans receive Medicare, Medicaid, and Children’s Health Insurance Program (CHIP) benefits. And Medicare has already defined its four PHR choices http://www.medicare.gov/PHR/PHRChoice.asp

    In order to gain knowledge about system design and organizational implementation in this area, I believe comparing British NHS and American CMS approaches to PHR would be most beneficial.

    Omar El Sawy
    Professor of Information Systems
    Marshall School of Business
    University of Southern California

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  5. The biggest challenge for PHR for diabetics is for them to have daily available the information they gather as frequently as they possible can and for that information to remain open and available to be incorporated in a shared care practice by the set of providers that support this diabetic in a “client centered” perspective.
    So for them to help the individual them to seek his or her quality of life, so information can then be shared regarding the health condition of the diabetic, his or her questions or even providers questions and responses collectively available to those engaged in shared care.
    Thank you
    Jane Dullius, PhD
    Professor in Health Sciences and Physical Education
    University of Brasília
    Doce Desafio Program

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  6. Indeed legal and institutional constraints are major issues to the development of PHR in Brazil’s SUS (Sistema Único de Saúde – Health Unique System). This is program that it is said to atend 90% of our 200 million population. And still we are not able to provide our users with the same level of information as NHS does, meaning “request and obtain access to his/her medical records usually in 21 days or at a maximum of 40” as Guillermo mentions in his comments. To my knowledge there is no SUS effort to experiment PHR with its users either.

    I might say that Steve’s comment “whether or not it’s very useful to the patient, i.e., is the information it contains understandable to the patient, does it help patients make wise decisions about their care, does it help patient take better care of themselves and deal with personal problems, etc” is a wise one. In Brazil’s hospitals patient data is usuallykept in paper “prontuarios” and physicians uses medical terms that the user usually do not understand.

    And I also could not agree more to Omar’s comments when he says “In order to gain knowledge about system design and organizational implementation in this area, I believe comparing British NHS and American CMS approaches to PHR would be most beneficial.”

    I have a book dealing with costs in healthcare, therefore I’ll be pretty interested to be part in a multidisciplinary and multinational effort to explore the PHR issue as it relates to countries such as Brazil, USA and England.

    Hong Yuh Ching,
    Head of Management Departmento of Centro Universitário da FEI, SBC

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  7. The Achilles’ heel is a deadly weakness in spite of overall strength, that can actually or potentially lead to downfall. In the case of the Eletronic Records, I think the main problem is an ethical concern of whatever could be made public and what should be kept privately. In Professionalism, Eletronic Records and Physician-Patient relationship, bioethicist Howard Brody, MD stresses that EMR has been attacked by some as cumbersome and likely to cause rather than prevent errors. The ethical implications of the widespread implementation of the eletronic medical records, together with professionalism secrecy are essential aspects to be dealt with in a very thoughtful way.

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