When it comes to personal stories about health and health care in the media, there are always two sides, although it’s often only the patient’s that is heard. Health boards and doctors can’t respond for reasons of privacy.
Is it ever appropriate for a health professional to waive confidentiality and speak in public about a specific case?
This was among the topics discussed Friday at a public forum, as part of Eastern Health’s Ethics Education Day, called “The Individual Right to Privacy and the Public Right to Know,” held at the Health Sciences Centre auditorium. The first of its kind at Eastern Health, the day-long session featured guest speakers and panel discussions with representatives of the health board’s ethics service, access and privacy office and communications office, as well as members of the local and national media,and patients.
A session focusing on ethical issues faced by the health case system when it comes to social media was held in the morning, along with a panel discussion with outspoken Globe and Mail health writer André Picard, Mark Quinn of the CBC St. John’s, Coalition of Persons with Disabilities president Michele Murdoch, Eastern Health access and privacy office director Marian Crowley and Eastern Health vice-president of communications Carmel Turpin.
Crowley gave an overview of the Personal Health Information Act, which gives Eastern Health custody of its patients’ personal health information, and dictates specificly how it can be used, both inside the organization and publicly. The information can be used internally when it comes to billing for services, quality initiatives and research activities, as well as planning and delivering in the health care system, Crowley said. Externally it can be used when dealing with insurance companies, if other government departments must be contacted (for example, to find out if a patient is eligible for certain financial assistance), if it’s required by another law and, in certain circumstances, to the police.
“We always keep in mind that the minimum amount someone needs to do their job is what we’ll be providing them,” Crowley said.
In the case of dissatisfied patients who take their stories to the media, the limits of the law can often mean health officials’ hands are tied, and are unable even to correct information that might be circulating in public, Crowley said.
Turpin said this can be detrimental to the health board’s reputation — something she admitted took a beating during the scandal surrounding mistakes made in estrogen and progesterone receptor testing for breast cancer patients and the subsequent commission of inquiry.
Turpin noted Eastern Health CEO Vickie Kaminski was criticized earlier this year when she responded on an open-line radio show to a family who had been in the media for weeks, talking about circumstances surrounding the care of a family member.
“It sort of got to the point where, as an organization, we felt there was so much incorrect information being talked about out there, plus there was a care team around that patient who were doing their best to provide the appropriate care for her, who were feeling absolutely destroyed in the public domain,” Turpin said. “Vickie called up (VOCM) “Open Line” to try and explain that we’re doing all we can do for this patient inside this facility. There was a certain treatment that patient wanted that we had a challenge to provide, and in trying to talk about the challenge, Vickie inadvertently made reference to the weight of the patient.
“There was a lot of criticism against Vickie for saying that,” Turpin said. “But everybody knew what the patient’s name was, everybody had heard everything about this patient’s history, there was a YouTube video of her in her treatment at another facility.
“Vickie was being criticized for that inadvertent breach of the person’s privacy when everything about that patient had pretty much been out there in the public domain.”
Over the past two years, Eastern Health has received almost 200 media calls relating to individual cases to which officials were unable to respond, Turpin said.
“People were probably questioning Eastern Health and what we were doing in terms of providing services because we did not respond,” she explained.
“When we do get media calls regarding individual patients, we do try to provide general information. We’re trying to get better at doing that so we’re not just leaving it with nothing to say.”
Media participants in an afternoon panel included VOCM’s John Reynolds and Peter Jackson of The Telegram.