The problem with protecting health information

Picture a scenario where you see a specialist physician, she writes you a prescription, you bring it to your pharmacy, and the pharmacist discovers an interaction with a prior medication from your family doctor. The pharmacist should call the specialist, let her know about the interaction, and request a substitution, right?

Not so fast. The very fact that you take this other medication is private information about your health — part of your “personal health information” (PHI). Even in your best interest, does the pharmacist have the right to share your PHI with your specialist without seeking your permission? The answer may surprise you.

The issue of patient privacy has recently entered the public consciousness, after the tragic suicide of an unsuspecting nurse who was duped into divulging information about Kate Middleton’s pregnancy. Physicians have long struggled with the predicament that this nurse was placed in — how to protect a patient’s information while still being compassionate with their loved ones in a time of need. Added to this is the challenge of protecting privacy while co-ordinating care with multiple health-care team members in a practical and timely way.

To address these concerns, Ontario introduced the Personal Health Information Protection Act (PHIPA) in 2004, outlining regulations for health-care workers sharing PHI. For example, sharing of any PHI with family members requires express patient consent. When sharing with other health-care workers, consent may be considered “implied” if sharing is for the purposes of providing care. However, the act also stipulates that PHI should be disclosed only when “it is not reasonably possible to obtain the individual’s consent in a timely manner.”

This last condition leaves doctors in a bind. It would be “reasonably possible” to acquire consent by asking directly, by calling, or by mailing consent forms. But doing this for every piece of information shared with other health workers is impractical, and amounts to a huge administrative burden that would eat into the precious time they have with patients. Traditionally, doctors have assumed implied consent in most situations, but concerns about breaching the act are increasingly influencing practice.

For example, it is common for specialists to send reports to the patient’s family doctor to keep them informed. Recently, a patient seen at a Toronto hospital’s specialty clinic wished to withhold certain details of their health from their family doctor, but failed to mention this to their specialist. When the family doctor received the specialist’s report, the patient threatened legal action. Based on their lawyers’ interpretation of the PHIPA, the hospital then instituted a policy whereby family doctors were no longer to be included in any specialist correspondence without express patient consent (except when they had themselves referred the patient).

Some of Ontario’s Community Care Access Centres (CCACs) recently took this one step further. Doctors who refer their patients to this government testing program began noticing that results were not arriving at their offices. Care was delayed by several months by the time the program’s unannounced policy change emerged — it will no longer divulge test results, even to referring physicians, without express patient consent. Some hospitals are now even interpreting the simple fact that a patient is being seen by a certain doctor as PHI. Accordingly, leaving messages reminding patients of upcoming appointments is being banned, in case others might hear them.

This “defensive” approach carries consequences. Specialist-family doctor communication is critical for continuity of care, and research shows that it impacts patient health. Withheld test results delay therapy, prolong patient suffering and uncertainty, and may lead to new complications.

Even banning reminder messages can impact the health system. Studies have shown that a simple reminder message decreases the proportion of patients who miss their clinic visit to 20 per cent, down from 50 per cent. Imagine a specialist with a six-month waiting list, and only half of the scheduled patients showing up in each clinic, while the rest continue to get worse and end up in overcrowded ERs.

Were these the intended consequences of Ontario’s PHIPA? Of course not. The act provides needed protection for your private information. But it is also subject to different interpretations that can have profound effects on care. So just as hospital lawyers are concerned with the 1 per cent who want to hide information from their family doctor, your health-care workers worry about the 99 per cent whose care will be undermined by this.

Unfortunately, protecting the rights of this “silent” majority is not as straightforward as it should be.

Written for Toronto Star by Dr. Samir Gupta.

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