The death of a 37-year-old woman in hospital is raising questions about the public’s right to know about the health-care system and legislation to keep health information confidential.
Allison Holthoff died after seven hours in the Amherst emergency department. Patient safety expert Dr. Rob Robson says the public deserves an explanation.
“This kind of incident undermines trust in health-care services very broadly. Not just that family, but people who know them and people in that community who will wonder, ‘Is this going to happen to me?'” he said from Dundas, Ont.
A “quality review” investigation into the circumstances has been launched to improve the system, but — by law — almost everything about it will be kept from the public.
Nova Scotia Health says these reviews are conducted whenever there is a “serious reportable event involving someone who has had contact with the health care system.”
The process is confidential, including any “information in any form that is communicated for the purpose of or created in the course of carrying out a quality improvement activity.”
The provision is in the Quality Improvement Information Protection Act.
The act was cited by the provincial health authority in its refusal to provide details about what happened to Allison Holthoff.
While Holthoff’s family revealed the circumstances leading up to her death, the government did not disclose that a fatality had occurred at the Amherst ER.
“We are bound by privacy laws,” says Health Minister Michelle Thompson. “We continue to operate within that legislative framework.”
Thompson committed to share recommendations only with the family.
The act is designed to protect patient information and to encourage people within the health-care system to come forward when there are problems.
When to disclose, not disclose
“There are very good reasons not to disclose health data,” said Katherine Fierlbeck, a Dalhousie University professor who researches health governance. “I couldn’t fault the minister for protecting any specific information regarding the treatment of that one individual.”
Protecting patient confidentiality and ensuring whistle blowers can come forward are appropriate, but Fierlbeck said the the Quality Improvement Information Protection Act is very broad.
“While the act functions well in general, you don’t want it to become a shield that any authority can hide behind,” she said.
Earlier this month, the act was cited in a blanket refusal to provide health data requested by CBC under the Freedom of Information Act. The application was for records on outcomes of heart transplants since 2017 and long-term ventricular assist device outcomes since 2017.
“We are withholding quality-improvement information that was communicated and created for a quality-improvement activity,” Nova Scotia Health said in denying the request.
Fierlbeck says the request was reasonable and could have been disclosed in a way that would not compromise anyone.
“If the minister refuses to make this information public, even though they legally can do so, the question rightfully shifts to, well, why not?” she said.
‘We definitely have questions,’ says health critic
In 2022, the Progressive Conservative government amended the act to ensure it superseded other legislation, including the Freedom of Information Act.
The opposition New Democrats voted for the amendment, but health critic Susan LeBlanc says its use to deny information on heart transplants is concerning.
“The reason we supported the act was because we believe that the public and people’s personal health information needs to be protected and health-care workers need to be protected in their jobs. So when we’re seeing the act used for other reasons, or it appears that way, then we definitely have questions,” LeBlanc said.
Last week, LeBlanc and the NDP released data on the number of ER deaths in Nova Scotia from 2017 to 2022.
The statistics were obtained through Freedom of Information.
The CBC requested information on emergency department deaths in 2022, as part of questions submitted Sunday, Jan. 8, about the Holthoff’s death.
Nova Scotia Health ignored the question in its blanket refusal that cited the Quality Improvement Information Protection Act.
It offered this explanation later in the week.
“We had requests with various questions related to the Cumberland patient death from three outlets on Sunday and provided the same written statement to each. The citation of QIIPA and personal health information was specific to the circumstances of the case and the review of it,” spokesperson John Gillis wrote in a statement.
“Data on [emergency department] deaths was not information we would have been able to access or gather on Sunday and the media team was not aware of the [Freedom on Information request].”
LeBlanc is wary.
“I think that this government is — in a way — hiding behind the legislation and using it as a reason not to give out any information.”