Week Nine 3/15/15 – 3/21/15 Policy Governing Access to Data and Privacy Protection in an Electronic Age


HIPAA and Privacy Protection

Privacy protection in the healthcare world revolves around the acronym HIPAA. It is a term you hear often from patients to providers, but what exactly does HIPAA entail? To start, HIPAA stands for the Health Insurance Portability and Accountability Act (1996). Below is a quick summary of some key points:

  • Protection of healthcare coverage in terms of job termination, divorce, separation, etc; and coverage regarding preexisting conditions.
  • Privacy and rights protection through the creation of Protected Health Information (PHI).
  • PHI must be observed by health care providers (e.g., physicians, pharmacists, nursing homes, clinics, etc), health plans (e.g., insurance companies, Medicare, HMOs, etc) and a health care clearinghouse.
  • National provider identifiers (NPIs) for individuals instead of social security numbers to ensure privacy and protection.
  • Patient access to medical records and the identification of those who can access the records; and the capability of making changes to medical records (U.S. Department of Health and Human Services, n.d.).

The one disclaimer about HIPAA: It is observed by those covered entities who conduct healthcare transactions electronically (Centers for Medicare & Medicaid Services, n.d.).

Privacy and preserving a patient’s rights are imperative in the today’s healthcare world. With the advancement of technology, patients are worried about who has access to their information.  Where the federal government ends with HIPAA and privacy laws, state laws are in place to take over. For instance, if state laws are more stringent in areas of privacy they will take precedence over HIPAA. Congress has mentioned a preemption of state privacy laws with a single federal health privacy standard, but a majority of politicians do not want to be associated with taking away citizens’ privacy rights (Pritts, 2007).


Privacy Protection and Death with Dignity

We all value our health; and most importantly we value keeping our information private. Most people do not want their medical history, lifestyle choices, lab results, prescriptions, procedures, etc., made public. This rings true for a terminal diagnosis. For instance, Steve Jobs, the genius behind Apple, kept his pancreatic cancer diagnosis a secret for some months. The media assumed it was because the diagnosis would have hurt Apple stock prices (CNET, 2015). Some terminal disease processes, like cancer, can bring a stigma that a person is weak; and those diagnosed are given a death sentence by public opinion. As a hospice nurse, I cared for patients who placed shame upon themselves for “giving up” for choosing comfort care in lieu of aggressive treatments. Regardless if a person chooses aggressive treatments, hospice, or death with dignity, the decision should be a private matter between the affected person and their loved ones.

Other Thoughts…About Rights…and Privacy

In the United States (U.S.) there is ongoing dialogue about respecting one’s rights. This week the focus was on the right to privacy in an electronic age. Supporters of Death with Dignity would say that people of the U.S. are being stripped of their human rights. Also, those participating in Death with Dignity are being condemned by opponents in a public forum. If one if choosing to end their life with dignity, shouldn’t we all respect their decision and privacy in this matter? I guess this is the ongoing debate (not only with healthcare rights) but also reproductive rights, gay rights, etc. The debate goes on!


Centers for Medicare & Medicaid Services (n.d.). HIPAA: General information. Retrieved from https://www.cms.gov/Regulations-and-Guidance/HIPAA-Administrative-Simplification/HIPAAGenInfo/index.html?redirect=/hipaageninfo/

CNET (2015). Jobs his cancer diagnosis for nine months. Retrieved from http://www.cnet.com/news/jobs-hid-cancer-diagnosis-for-9-months/

Pritts, J. L. (2007). Federal efforts to impose uniformity on state health information and privacy laws. Health Law & Policy, 2007, 20-23.

United States Department Health & Human Services (n.d.). Understanding health information privacy. Retrieved from http://www.hhs.gov/ocr/privacy/hipaa/understanding/


11 thoughts on “Week Nine 3/15/15 – 3/21/15 Policy Governing Access to Data and Privacy Protection in an Electronic Age

  1. mcivic2015

    The idea of privacy and dying with dignity is complex. I know other states that have enacted dying with dignity laws, such as Oregon, require the physician report all lethal prescriptions written. The statistics are followed and show how many patients actually use the lethal prescription, compared to the number of patients who do not end up using the service. Do you know in these cases, how the patients privacy is protected? And in your opinion, is simply de-identifying data prior to reporting enough to protect the patients privacy? Lastly, how is the patients privacy maintained if they decide to die with dignity, but do not want to share that information with their family? Is the patient’s family allowed to see the reason for death on the death certificate? I obviously do not expect you to have answers to all these questions, but definitely see how the complexity of your topic and patient privacy leads to some difficult decisions in the regulations of these laws!

    Liked by 1 person

    1. dignitydiscussion Post author

      You know…to be honest, I had the exact same questions you just asked when writing this post. I promise to look into both questions and try to come up with an answer. I did read about the yearly report that is published in Oregon pertaining to lethal prescription; and it being public knowledge about number of prescriptions written, used, etc…Thanks for the ongoing dialogue. I enjoy it because I am extremely interested in this topic!


    2. SHEllis

      Really good questions. Do you think if someone chose to take a lethal prescription without telling friends or family and then was found a short while later, family members might still ask for an autopsy, even if they were aware of a terminal diagnosis? I looked into the Health Insurance Portability and Accountability Act’s (HIPAA) Privacy Rule regarding postmortem confidentiality. Family members have access to postmortem health information if disclosure to a physician would aid in the treatment of a surviving relative (Mathews & Martinho, 2012). Additionally, a legally authorized representative, such as the healthcare power of attorney of the deceased, can also access records (Mathews & Martinho, 2012). The American Medical Association’s ethical code states that when deciding to disclose medical information postmortem, it is important to consider the impact on the deceased patient’s reputation (American Medical Association, 2012). In my personal opinion, I think that families would need to be given some explanation regarding cause of death for their psychosocial health and coping. However, if an individual chose not to disclose their participation in dying with dignity, there was likely a good reason guiding this decision. Privacy is certainly an ethical issue that will likely be addressed as more states allow access to dying with dignity.


      Mathews, C. & Martinho, A. M. (2012). Patient-physician confidentiality: ‘Til death do us part? AMA Journal of Ethics, 14(9), 720-723.

      American Medical Association. (2012). Code of Medical Ethics: Opinion 5.05 confidentiality. Retrieved from http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion505.page

      Liked by 1 person

  2. waynemcintosh

    I wonder if part of Steve Jobs decision to keep his illness a secret was because of the nature of a business like that. In a press release regarding the first quarter profits, Apple grossed 66.5 billion dollars, that is in one quarter (Apple Media, 2015). I think to run a company like that you have to be precise, intelligent, but mostly secret about a lot. I think we love a comeback story and to watch him struggle was tough.
    I also hear from patients that they don’t want to give up. I could never imagine what that struggle must feel like but I am glad that we have practitioners like you that will say it’s okay to be whomever you need to be.


    Liked by 1 person

    1. dignitydiscussion Post author

      Unbelievable…66.5 billion dollars?! That would absolutely be a reason to keep mum on a terminal diagnosis. It would have stockholders fearing for their shares. Although, it appears Apple is still thriving. Have you seen the new watch? I


  3. amhartma

    Out of curiosity I researched the DWDA to examine what the policy requires for reporting to loved ones. Washington state’s “Compassion & Choices of Washington” provides physicians with a guide for the DWDA. In the guide, it states,

    “The DWDA requires that patients be counseled that:
    1. He/she may rescind the request for DWD at any time, and for any reason.
    2. He/she should discuss his/her intentions with close relatives (a recommendation required to be made by the physician, but not required of the patient). Note: Our client support volunteers (CSV) can help facilitate family meetings about DWDA.
    3. He/she should take the medication with at least one other person present (We will generally offer to send two CSVs to support patients who are taking the medicines).
    4. He/she should not take the medicines in a public place (2015)”.

    So apparently it is not mandated that the physician or patient discuss their wishes with family members although it is recommended. This is definitely a prime example of health privacy protection and a limitation on access to data – although I think the person’s medical power of attorney (if they had one in place) would be allowed access to the information, is that correct?

    Liked by 1 person

  4. nanettewhittington

    I didn’t realize that HIPPA was governed just for “electronic” privacy. That is very interesting. Out of curiosity what protects patients or people if they go to a provider that still has paper charting and paper files? I also found the story about Steve Jobs. Good for him that he was able to keep his disease out the of the public arena for the length of time he did. I also agree that every human being has the right to privacy and protection.



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