How my family hit a roadblock in accessing medical records

[Annette McKinnon]

I am cutting and pasting an article from today's (Aug 7) Toronto Star because The Star has a paywall. The article is about Ontario but I wonder if things are any better in other parts of the country.

How my family hit a roadblock in accessing medical records

By Iris KulbatskiContributor

Canada's healthcare system has been a source of national pride for as long as I can remember - a view that was shattered following my experience as a patient advocate during my late father Henry's cancer journey.

The depths of perversity were made apparent to me when I was charged over $1,000 to access my father's medical records, bringing to light a serious, long-term, systemic problem with access to medical information in Ontario. After much effort and hardship, my father's medical file was released for $40, but not before the hospital updated its online fee policy

Anyone trying to obtain a large electronic medical file in the future will be forced to pay an exorbitant fee, based on a per page charge for the electronic record. Charging more than $40 for electronic medical files goes against the recommendations of the Information and Privacy Commissioner of Ontario. Apparently, the hospital had already been charging such fees for years, under the radar and against their own previously posted public policy.

As it turns out, this is nothing new. A large majority of the complaints received by the Information and Privacy Commissioner relate to inaccessible fees. Kathleen Finlay, founder of The Center for Patient Protection, was quoted in CTV's recent coverage of my family's experience: "It happens all the time. It's one of the most frequently raised issues when people come to the centre and I've been doing this for the last seven or eight years."

In 2006, the Ministry of Health proposed a regulation for fee enforcement but it has been sitting on the back burner ever since, despite support from the Information and Privacy Commissioner. This begs the question: why has the regulation not been enacted when an obvious and ongoing need for fee enforcement exists? As the old adage goes, if you want an answer to a seemingly perplexing question, just "follow the money."

Unsurprisingly, the voice of the country's healthcare corporations drowns out that of its citizens. A 2016 report released by the Canadian Institute for Health Information and the Canadian Patient Safety Institute found that 138,000 Canadian patients admitted to hospital during 2014-2015 experienced a harmful event, ranging from hospital-acquired infection to medication errors. Of these patients, 17,300 died during their hospital stay.

At first glance, charging exorbitant fees for medical files may seem like a cash grab, but the financial burden of ongoing and extensive litigation far surpasses the revenue earned through medical record fees. Financially bullying a patient or family in crisis is an effective deterrent to litigation by the hundreds of thousands of patients and family members affected by preventable medical harm in Canada.

Given that the system for compensating victims of medical harm is rigged and that Canada's secret world of preventable diagnostic and treatment errors is steeped in a culture of silence, it should come as no surprise that barriers to access of medical files are so common. Health information custodians are intended to be keepers of medical information, not guardians of the truth.

Annette

[Tara Setaram]

Hi Annette,

My everyday work realm is with folks who’ve been human trafficked(HT) This is a re-occurring barrier we see everyday from province to province.

Even if we accompany a client to the doctor to sign the forms to have medical records transferred and call the other province, medical records are not transferred and either party blames the other. We’ve (organizationally) offered to pay and no successes yet.

The one time success point, was during a rapid cross province re-location, a HT survivor, as a final straw, called the CPSO stated they were violating the Canada Health ACT and by the end of the week in 2013 she had a USB waiting for her with all her heath records from the family doctor. However, the new home province would not have anything to do with it. Once she relocated back to Ontario, her records became inaccessible and there is a 3 yr medical gap, no opportunity for our organization to pay and just the blame game between health orgs (ranging from hospitals, walk-ins and harm reduction health teams)

This is an advocacy priority for trafficked persons accessing timely health care that not many consider - let alone for everyone else trying to get their records.

[Annette McKinnon]

I had no idea that this was an issue. Your one story of success makes me happy except for the obvious fact that it didn't work!! It's sad that this is the approach you have to take.

What can we do to work on this?

I'm in a trial for a patient portal that is shocking me. It starts off free but after the trial is over I will have to pay, but I plan to quit. (My good friend said I was an idiot to sign up at all lol)

I was dismayed by this excerpt from the privacy policy I needed to agree with

" by posting, uploading, inputting, providing or submitting your Submission you are granting xx...xx..., its affiliated companies and necessary sublicenses permission to use your Submissions in connection with the operation of their business including, without limitation, the rights to: copy, distribute, transmit, publicly display, publicly perform, reproduce, edit, translate and reformat your Submissions."

This is the 'worst privacy policy 'I have ever seen.

Annette

[Annette McKinnon]

I had no idea that this was an issue. Your one story of success makes me happy except for the obvious fact that it didn't work!! It's sad that this is the approach you have to take.

What can we do to work on this?

I'm in a trial for a patient portal that is shocking me. It starts off free but after the trial is over I will have to pay, but I plan to quit. (My good friend said I was an idiot to sign up at all lol)

I was dismayed by this excerpt from the privacy policy I needed to agree with

" by posting, uploading, inputting, providing or submitting your Submission you are granting xx...xx..., its affiliated companies and necessary sublicenses permission to use your Submissions in connection with the operation of their business including, without limitation, the rights to: copy, distribute, transmit, publicly display, publicly perform, reproduce, edit, translate and reformat your Submissions."

This is the worst 'privacy policy 'I have ever seen.

Annette