Safeguarding our personal information is crucial. And for good reason. Data breaches have become all too commonplace, threatening the security of our most personal information. Only recently, for example, we learned a breach of Ontario's vaccine management system in November 2021 compromised the records of about 360,000 people. According to news reports, data was stolen and potentially given to fraudsters.
Sadly, data breaches involving patients and their medical records and sensitive information are not unusual. We often hear news from across the country about hospital staff accessing records without authorization. It is an unsettling prospect and I wholeheartedly support the most stringent of security measures and severe penalties for those who illegally access our personal records.
Ontario has regulations governing health information
In Ontario, our healthcare sector has been governed by the Personal Health Information Protection Act (PHIPA) since 2004. The Act mandates the manner in which personal health information is collected, used and disclosed. According to the PHIPA, "personal health information is among the most sensitive of personal information. People are understandably protective about sharing personal details and confidential information relating to their medical conditions. At the same time, personal health information must flow freely between healthcare practitioners in order to ensure the best care for patients." "The nature of our health system is that personal health information passes through many links in the health care chain: from a doctor's office to a referral to a specialist, to a medical lab, to a hospital or to an insurance company for reimbursement of claims," the Act states. "There are many circumstances in which personal health information must be readily, as well as expeditiously, shared."
Parents are often denied access to children's records
The free flow of medical information is indeed essential to the health and well-being of a patient. And I agree there are many instances where that information must be "readily as well as expeditiously shared."
Unfortunately, there are far too many cases where that sharing of information could do significant good but access is routinely denied. In what I can only assume is a misguided attempt to follow the rules or, more cynically, to protect themselves from lawsuits, the medical profession has been known to throw up roadblocks to prevent parents from getting access to their children's medical records.
As a mother of a child with disabilities, I have dealt with the issue more times than was necessary. It is a problem that is more common than many realize. And what is especially troubling is there is rarely a justification for denying parents those records.
Advocating for their children
My son Maclain, has severe Cerebral Palsy and profound hearing loss as a result of a condition known as Kernicterus, a brain injury that results from untreated jaundice. As a parent, it is my job to advocate on his behalf to ensure he has everything he needs.
I remember after we received his diagnosis and we had a suspicion that something had transpired at the hospital that shouldn't have. I wanted to see for myself what had happened and what we could do to help and protect him.
While he was still in the hospital, Maclain failed his newborn hearing screening, and a few months later a hearing test revealed our worst fear – he was deaf. We were told this was a permanent condition and hearing aids would not work for him. I am not one to give up without a fight. I did some research and we sought a second opinion from an audiologist. That's when we learned about the Hospital for Sick Children's cochlear implant program. Today he hears at an age-appropriate level.
Maclain has made great strides in his life. Last year, he became the first credit earning student requiring full-time EA assistance in high school at our board. He is paving new paths for others who come after him.
Our journey has not been without challenges but our efforts to advocate on behalf of our son were greatly enhanced by finally gaining access to his medical records and being empowered with this information.
Many reasons for parents to need to access medical records
It should be noted that parents do not necessarily request these records just for the sake of having them. There can be many reasons. Some simply want the ability to review them. Hearing a doctor's prognosis can be extremely stressful and overwhelming. It can be easy to miss some of the details.
Some will want to look for red flags. Parents might wonder "Was there something that happened that shouldn't have?" "Is there something that wasn't communicated to me?"
Other parents will want to have their children's health records to share with other healthcare providers, such as specialists or therapists. Without having their own copy of the file, parents would have to request permission to share those medical records with each individual healthcare professional, which is unnecessarily time-consuming and oftentimes costly.
When you have a child with a disability, these records are essential to accessing support and services. For instance, you are asked to provide a diagnosis and neurology report when developing an individual education plan for your child to be placed at a school.
When I register Maclain for a special needs camp or other programs, I am asked to provide a copy of his diagnosis or health concerns, vaccination records, things like this. The same goes when I want to access benefits or apply for organizational support. Depending on the program or service, I may also be asked for results from his last clinic visit.
Hospitals do not have an integrated electronic medical records system. That's why not having your own medical records can complicate an emergency room (ER) visit if you are the parent of a medically complex child. Being able to provide a complete medical record allows those in ER to better treat your child in a more efficient way. Which, of course, may also reduce your anxiety.
Obtaining your child's health records should not be that hard
Getting access to your child's medical records should be a simple matter. It is not. When I asked for my son's files, I received pushback. I was told Maclain's file would be provided to my family doctor. When someone doesn't want to give me access to my child's records, I wonder what is being hidden.
Hospitals can become reluctant to share information, especially after there has been a diagnosis of Cerebral Palsy. In my experience, there is an assumption that someone asking for these records is contemplating legal action. That is neither here, nor there. It doesn't matter what their motivation is, parents are entitled to that access.
Of course, there may be legal reasons for limiting access to the information. For example, one parent may have sole custody in a divorce. Also, when a child turns 16, their consent is needed to share their medical records.
For a parent whose child has a disability, having access to their medical history is invaluable to ensuring they are getting the proper care and treatment. A parent is the decision-maker, the final arbiter who must sign off on authorizations for procedures and determine the best path for their child.
Information is power and parents should not be put in a position where they have to beg for the files they have a right to see.
The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.