Information Literacy

Protecting our patients personal health information (PHI) under the regulations of the Personal Health Information Protection Act (PHIPA) is a nursing responsibility.  Nurses have both the ethical and legal responsibility to maintain our patient’s confidentiality and privacy as we are health information custodians (College of Nurses of Ontario, 2019; Information and Privacy Commissioner of Ontario, 2015).  

The Office of the Information and Privacy Commissioner of Ontario (2015) outlined a document on circle of care and how health care custodians can share PHI for health-care related purposes.  Although the “circle of care” cannot be clearly defined, there are six conditions when implied consent can be used to disclose PHI (Information and Privacy Commissioner of Ontario, 2015).  It is important for the health care custodian to be aware that PHI can only be disclosed to certain other custodians for the “purpose of providing health care or assisting in the provision of health care to an individual” (Information and Privacy Commissioner of Ontario, 2015, p. 2).  The Ontario Agency for Health Protection and Promotion is considered a health information custodian due to their role in the provision of health for research and support as legislated by the Government of Ontario (Public Health Ontario, 2019).  This could include mandatory reporting for diseases such as HIV, Hepatitis A B C, and Influenza (Government of Canada, 2018).  Another condition that must be met is that PHI must have been received from the individual of the PHI, his/her substitute decision maker (SDM), or from another health care custodian (Information and Privacy Commissioner of Ontario, 2015).  Therefore, consent cannot be assumed if received from a third party such as an employer, insurer, or educational institution (Information and Privacy Commissioner of Ontario, 2015).  The PHI that will be used, collected, or disclosed must be used for providing health care or assisting in the provision of health care to the person that the PHI relates (Information and Privacy Commissioner of Ontario, 2015).  This is an important consideration when determining implied consent as there are a number of situations where this does not apply.  These situations can include research, fundraising, marketing, or providing health care to another individual or a group of individuals (Information and Privacy Commissioner of Ontario, 2015).  As well, implied consent cannot be provided to a person or organization that is not a health information custodian (Information and Privacy Commissioner of Ontario, 2015).  Patient’s always have the right to withhold or withdraw consent of their PHI, however, in some cases, PHIPA requires that information is shared (Information and Privacy Commissioner of Ontario, 2015).  An example of this would be the mandatory reporting to Public Health.  

There is a difference between implied consent and expressed consent.  Implied consent was discussed in the above paragraph, however, expressed consent is provided by the individual or SDM either verbally or written (Information and Privacy Commissioner of Ontario, 2015).  In expressed consent, there are still required elements that must be fulfilled in order for the consent to be valid.  These include:

  • Consent obtained from the individual of the PHI or SDM
  • Must be knowledgeable about the purpose, use, or disclosure and his/her rights to withdraw consent
  • Must relate to the information being collected, used, or disclosed; and
  • Cannot be obtained through deception or coercion (Information and Privacy Commissioner of Ontario, 2015)

Health Information on the Web

Personal health information and health information that is available on the internet continues to grow.  Personal health information contains any identifying information about a person’s physical or mental health including family health history, care that has been provided, a plan for services, payment or eligibility for health care, donation of body parts or substances, health number, and the name of a client’s SDM (College of Nurses of Ontario, 2019).  Health information can include information on a health related topic that can be found on the internet.  For example, a fact sheet on how to manage hypertension could be considered health information and could alter health behaviours in people seeking out that information.  In my role as a health care provider and a soon-to-be Registered Nurse (RN), it is important to hear the patients version of what they have learned from their own research in order to fully appreciate their level of understanding of the illness/symptoms/disease process.  Depending on the accuracy of their information, the RN can provide evidence based information and recommendations based on their health issue.  The RN can also promote the patients ability to participate in their own health care by recommending reputable websites such as The Heart and Stroke Society, if they want additional information on hypertension, for example. 

Patients can post information about their own PHI, however, PHIPA does not allow for the disclosure of PHI of family members or SDM.  So, if the person is sharing information about their own journey of hypertension and then states that their Father also has this condition, this would be a violation of PHIPA.  As a soon-to-be RN, my role in this would be to educate people on PHIPA. 

Health information is becoming more readily available for Canadians on the internet.  There is a variety of sites available for people to access information on diseases or illnesses, basic self-care strategies, and several other health related topics.  Depending on the person’s health literacy this can significantly impact the person’s ability to respond to the information provided on the internet or to critically examine information that is not reputable.  Using the health discussion board on the web called: http://www.reddit.com/r/Diagnosed, I will examine a message thread that was posted and deconstruct the responses provided to the original poster.

I found an interesting thread that was posted almost 5 years ago from a nineteen year old female who had presented to the emergency room (E.R.) for tachycardia, hyperventilation, hypotension, and dizziness upon standing.  This patient was monitored in the E.R. with lab work, ECG, and monitoring of her vital signs.  She has had panic attacks in the past but had reported these episodes were different and not triggered by anxiety.  She was discharged home with no explanation for her symptoms and directed to follow up with her primary health care provider.  There was four responses to this woman about possible explanations for her symptoms and recommendations on further follow up.  The first response was surprisingly accurate in describing the common diagnostic tests that are performed in the E.R. such as an ECG and lab work.  However, this responder stated that having “black spots” or “dizziness” when standing or sitting up quickly is common.  This is not common in everyone and should be investigated further as there could be a number of reasons for this phenomena.  It is normal to have an increase of 5-20 bpm above resting, a slight increase to systolic pressure (up to 10 mm Hg), and a slight increase to diastolic (5 mm Hg) (Norris & Swiniarski, 2016).  Another responder encouraged this woman to ensure that she was consuming enough fluids of 1-2 L per day and to relieve stress.  This responder also directed the woman to check out a Wikipedia website on orthostatic hypotension.  Although the recommendation for fluid intake and relieving stress was appropriate, it is worrisome to direct this woman to a Wikipedia site for health information.  Another responder inquired about vertigo or hypothyroid.  Hypothyroid manifests as fatigue, hair loss, brittle nails, dry skin, paresthesia in fingers, menstrual disturbances, subnormal body temperature and pulse rate, and an increase in weight (Williams & Day, 2016). 

I enjoyed reading the posts on this website as it gave me a perspective I did not have before on health-related discussion boards.  People can use these sites for support and expertise that may support their journey in determining causative factors for their symptoms, however, it is important that the people using these sites seek the opinion of a regulated health professional.

References

College of Nurses of Ontario. (2019, April). Confidentiality and Privacy – Personal Health Information. Retrieved from College of Nurses of Ontario: https://www.cno.org/globalassets/docs/prac/41069_privacy.pdf

Government of Canada. (2018, November 25). List of nationally notifiable diseases. Retrieved from Government of Canada: https://diseases.canada.ca/notifiable/diseases-list

Information and Privacy Commissioner of Ontario. (2015, August). Circle of Care Sharing Personal Health Information for Health-Care Purposes. Retrieved from Information and Privacy Commissioner of Ontario: https://www.ipc.on.ca/wp-content/uploads/Resources/circle-of-care.pdf

Norris, C. & Swiniarski, G. V. (2016). Assessment of cardiovascular function.  In P. Paul, R.A. Day, & B. Williams (Eds.), Brunner & Suddarth’s Canadian textbook of medical-surgical nursing (3rd ed., pp. 716-753). Philadelphia, PA: Lippincott Williams & Wilkins.

Public Health Ontario. (2019, April 8). Privacy. Retrieved from Public Health Ontario: https://www.publichealthontario.ca/en/about/privacy

Unknown (Photographer). (Unknown). Privacy lock [digital image]. Retrieved from URL https://ryyacatjr.files.wordpress.com/2015/11/privacy_lock_300_jpg.jpg

Williams, B. & Day, R. A. (2016). Assessment and management of patients with endocrine disorders.  In P. Paul, R.A. Day, & B. Williams (Eds.), Brunner & Suddarth’s Canadian textbook of medical-surgical nursing (3rd ed., pp. 1334-1379). Philadelphia, PA: Lippincott Williams & Wilkins.

Join the Conversation

2 Comments

  1. Hello, Britter.
    I enjoyed reading your blog post. You raised a really great point in regards to individuals sharing information about family members and how that is a violation. We have all seen persons on social media sharing their personal drama to the world with no regard for the others privacy. This is so important to consider because if insurance companies caught wind of family medical history it could have very negative effects. Educating patients on health literacy can improve disease management, improve adherence to treatment regimens and decrease hospitalizations (Christensen, 2016; Eadie, 2014). I like your approach to asking patients to share their knowledge of disease prior to educating them as it gives you the opportunity to correct misinformation and gauge literacy level.
    The use of social media to engage patients in healthcare is sometimes being referred to as ‘Health 2.0’ (Knight, et al., 2015). In North America reportedly 60-83% of people use the internet as a source of knowledge for health information (2015). As you mentioned this is why it is important for us as nurses to guide patients on where to find factual information online. Too often I see people seeking health advice online based on how other people have reacted to a medication for their best course of action. I often sometimes remind them to speak with their health care provider about these concerns as every person is different. However, social media has proven to show positive results when used correctly. Physio therapists (PT) found that using a “people powered” health platform engaged patients and improved treatment outcomes (2015). Especially with use of sites such as YouTube because today’s society prefers to gain knowledge through videos rather than reading. As well PT found that collaborating with researchers, professional associations and user reviews enhances credibility (2015). Social media has proven to improve patient outcomes when used appropriately and nurses can help patients by providing them with proper resources.

    Brittany

    References
    Christensen, D. (2016). The impact of health literacy on palliative care outcomes. Journal of Hospice and Palliative Nursing, 18, 544–549. https://doi.org/10.1097/ NJH.0000000000000292
    Eadie, C. (2014). Health literacy: A conceptual review. MEDSURG Nursing, 23, 1–13
    Knight, E., Werstine, R. J., Rasmussen-Pennington, D. M., Fitzsimmons, D., & Petrella, R. J. (2015). Physical Therapy 2.0: Leveraging Social Media to Engage Patients in Rehabilitation and Health Promotion. Physical Therapy, 95(3), 389–396. https://doi-org.roxy.nipissingu.ca/10.2522/ptj.20130432

    Like

  2. Hello
    Great blog this week. I enjoy reading your blog and how you have incorporated an image within your blog. You are right; we are health information custodian, but at times I believe we forget. For example, when nurses comment on a patient with another colleague who is not taking care of the patient or not a custodian of health information. We tend to forget that it is a breach of patient privacy and confidentiality. Often, a colleague will say, “oh my goodness, this patient is stressing me out, can you imagine,” The nurse will go on to tell another nurse about the patient without even realizing. I think its human nature to express our thoughts and feelings. On the other hand, nurses need to remember we are professionals and guided by standards and guideline and should be accountable for our actions.
    You have selected an excellent example of a message thread. As you mention, individuals can use this site for support, but the challenge remains how credible and accurate are the opinions and information? The person responding might also portray themselves to be someone they are not like a nurse or doctor. Social media has its benefits and challenges, but I believe we should encourage patients to seek information from health care professional and if they wish to search the internet, the patient should clarify the accuracy of the information.

    Great Blog
    Thanks for sharing

    Like

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