A Toronto woman says she was charged more than $1,000 to access her deceased father鈥檚 electronic medical records, claiming the hospital changed its fee policy and backdated it to a day before she sent in her request.
In August 2018, Iris Kulbatski鈥檚 father died at the age of 74 after his prostate cancer spread to other areas of his body. The death came as a shock to Kulbatski and her family because they believed he had been living cancer free since 2011 when he underwent surgery to have his prostate removed.
During his biannual checkups at the Princess Margaret Cancer Centre from 2011 to 2017, Kulbatski said her father was consistently given the all clear from his doctor. In 2016, he underwent a CT scan to look for a cancer recurrence, but Kulbatski said they were told it turned up clean.
It wasn鈥檛 until April 2017, when Kulbatski鈥檚 father鈥檚 blood tests showed an increase in his prostate-specific antigen (PSA) levels, that the family became concerned. Kulbatski said they repeatedly asked his doctors to give him another CT scan, but they were told it was unnecessary because it was such a small increase.
Nearly a year later, Kulbatski鈥檚 father started having trouble eating and experienced constipation. His family doctor gave him an abdominal ultrasound and she discovered he had cancer growths in his liver. When the specialist at Princess Margaret Cancer Centre agreed to give him another CT scan following the ultrasound, the results were just as Kulbatski feared.
鈥淭hey [the growths] were in his lymph nodes, in his abdomen, in his pelvis, in the chest area, in the liver,鈥� Kulbatski told CTVNews.ca during a telephone interview on Friday. 鈥淚t was everywhere.鈥�
Three months later, Kulbatski鈥檚 father was dead.
To make sense of what happened to her father, Kulbatski, a medical researcher and science writer, began writing blog posts about his treatment and the toll it took on her family. As she pored over the limited information she could glean from her father鈥檚 online patient portal, which she had access to, she says she discovered an addendum on his 2016 CT scan report.
Kulbatski said the message, which was added to the 2016 scan after it was compared to the CT scan in 2018, noted that there were in fact enlarged lymph nodes in her father鈥檚 stomach, abdomen, and pelvis at that time.
鈥淚n 2016, it had already started to spread,鈥� she said. 鈥淪omebody failed to appropriately read and report on that CT scan and they missed it. He had at least two years, during which he could have received appropriate and timely care.鈥�
Requesting records
Following the discovery of the addendum to the CT scan report from 2016, Kulbatski said she wanted access to all of her father鈥檚 medical records and not just the ones available on the online patient portal.
鈥淚 wanted his full medical file from the hospital so I can dig deeper, see if I can find the truth, and then bring it to their [the doctors鈥橾 attention,鈥� she said.
On June 18, Kulbatski filed a formal request for his records with the University Health Network (UHN), which oversees the Princess Margaret Cancer Centre and Toronto General Hospital, where her father also received treatment.
Kulbatski said she checked UHN鈥檚 fee policy, which was posted on its website with the date April 26, 2011, to see how much it would cost to have her father鈥檚 electronic medical records transferred to her on a CD. The policy, which she took a screengrab of, stated there would be a $30 administrative fee and an additional $10 for the CD, Kulbatski said.
Shortly after, Kulbatski said she was shocked to receive an invoice for more than $1,100. The invoice charged her the $30 administrative fee, the $10 for the CD, and 25 cents per page after the first 20 pages of her father鈥檚 3,000-plus-page medical file.
When Kulbatski said she returned to UHN鈥檚 website to check its fee policy again, she discovered it had been changed to include a new section outlining the 25 cent per page charge for electronic records. That charge had only been for printed copies in the old policy, Kulbatski said.
To make matters worse, Kulbatski said the new policy was backdated to June 17, 2019 鈥� one day before she submitted her request for her father鈥檚 records.
鈥淥f course, now that鈥檚 what it says online because I brought it to their attention,鈥� she said. 鈥淭hey didn鈥檛 even know what their own policy said.鈥�
Alexandra Radkewycz, a senior public affairs adviser for UHN, said the online fee schedule was updated on June 17 to 鈥減rovide more detailed information about costs over and above鈥� the initial $30 administrative fee.
鈥淭hese extra costs 鈥� which are not new - pertain to things such as converting often extensive paper records to electronic files, and careful review of files for accuracy,鈥� she wrote in an emailed statement to CTVNews.ca on Friday. 鈥淎ll these extra costs are standard costs in Toronto hospitals.鈥�
Radkewycz acknowledged that medical staff should notify the person requesting access to the records that the cost could be high if it鈥檚 a large file.
鈥淲e will reinforce this step with our internal staff,鈥� she said. 鈥淔urther, we will review information on the website for clarity going forward so that misunderstandings about costs do not reoccur.鈥�
Kulbatski said she has submitted an appeal of the charges to Brian Beamish, Ontario鈥檚 information and privacy commissioner (IPC), and complained to her local MPP. She said after all of that, UHN offered to reduce the fees by 50 per cent.
On Friday, Radkewycz said UHN would reissue the invoice at $40 because 鈥渢he timing of the request and the online fee update coincided.鈥� She said the complete medical record is now available on a CD for Kulbatski to collect.
鈥楤arrier to transparency鈥�
Despite the revised invoice, Kulbatski said her experience speaks to a larger problem of access to information in the health-care system.
鈥淎s far as I鈥檓 concerned, it鈥檚 an obstruction to access to medical information. That鈥檚 not an accessible fee and it goes against the recommendations of the information and privacy commissioner of Ontario,鈥� she said.
, the IPC referenced its proposed fee regulations for the Personal Health Information Protection Act, in which it states that fees should not exceed $30 if 鈥渢he record is stored in electronic form, electronically transmitting a copy of the electronic record instead of printing a copy of the record, and shipping or faxing the printed copy.鈥�
is more vague and states that 鈥渢he amount of the fee shall not exceed the prescribed amount or the amount of reasonable cost recovery.鈥�
Kathleen Finlay, the founder of the Toronto-based advocacy group The Center for Patient Protection, said Kulbatski鈥檚 experience is nothing new.
鈥淚t happens all the time,鈥� she said during a telephone interview on Saturday. 鈥淚t鈥檚 one of the most frequently raised issues when people come to The Center for Patient Protection and I鈥檝e been doing this for the last seven or eight years.鈥�
Finlay said when hospitals charge exorbitant fees for these types of requests, they鈥檙e placing an extra burden on people who are most likely already experiencing financial hardship from missing work, transportation and accommodation costs.
鈥淭his all puts a lot of financial burden on families so when they get hit with an outrageous bill, most of them can鈥檛 deal with it,鈥� she explained. 鈥淎nd that鈥檚 a barrier to transparency that鈥檚 just not acceptable in our system.鈥�
Instead of discouraging people from becoming involved in their own or loved ones鈥� care, Finlay said Canada鈥檚 health-care system should be encouraging them to take an active role.
鈥淵ou want them to have confidence that the care was of the quality and appropriateness that it needed to be,鈥� she said. 鈥淵ou want to make it easy for them to view the records and you want to make it easy for them to follow up and ask questions. If you don鈥檛 have anything to hide, you shouldn鈥檛 worry about that.鈥�
For Kulbatski, she said she wants UHN to implement some new policies and practices so that other patients and their families don鈥檛 have to go through what she did.
鈥淯HN should not be putting people through this sort of hardship in order to get the medical file,鈥� she said. 鈥淚t should be easier to access the truth.鈥�
