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Physicians are calling for a change to prevent patients from receiving tragic medical news alone, without compassionate support from a health-care provider.
They say a new N.L. Health Services app called MyChart is allowing patients to see “catastrophic” medical results before their doctor does.
“We have heard stories of one woman who found out at night when she was checking the results of an ultrasound, not expecting to hear anything concerning, that she had miscarried her pregnancy,” said Newfoundland and Labrador Medical Association president Dr. Cynthia Slade.
“We are hearing about patients finding out they have cancer and their doctors not even having access to those reports. It’s creating a huge amount of anxiety for them and their families.”
I do understand the concern. This is an evolving topic that we’ll continue to learn, continue to adjust, but I think the overall benefits of having this outweigh the risks.– NLHS interim CEO Ron Johnson
The NLMA says these events could be less stressful if there was some time between when doctors and patients receive the results of medical tests.
“If there was a delay, even a 24 to 48 hour delay, which wouldn’t compromise people’s access to information, it would provide better care, I believe,” said Slade.
“Because that person’s physician could have read that, could have called that person ahead of time, and said ‘please come into the office’ and delivered the news in a compassionate way.”
Slade says it’s also causing a lot of anxiety for physicians.
“I spoke with a surgeon who said that at the end of her day she is now spending hours in the evening going through lab results and imaging results to make sure she is catching things before her patients do so she can reach out to them and let them know. So, it’s adding a huge amount of time to her day,” she said.
Patients had access to their health information before the health authority’s new digital health information system, CorCare, went live last month, but the new patient information app that comes with it gives patients easier access to their medical records and test results.
Slade says the medical association was calling for a delay to protect patients from getting difficult news alone before CorCare and MyChart were introduced.
The president of the association representing doctors in the province says they’re hearing of patients getting medical information through an app before their doctors can speak with them. Meanwhile, N.L. Health Services says using the app is completely voluntary. CBC’s Mark Quinn reports.
NLHS responds
At a recent update on the launch of CorCare health authority’s leaders said they have also heard of cases of people getting bad news, like a cancer diagnosis, on their phones or computers but they say patient access to their health information does more good than harm.
“By giving patients this type of information they can better control their own health care. They can prevent things from falling through the cracks. They can have the right conversations when they go see their providers, their physicians,” said NLHS interim CEO Ron Johnson.
“I do understand the concern. This is an evolving topic that we’ll continue to learn and continue to adjust but I think the overall benefits of having this outweigh the risks.”
Johnson says it’s something patients have called for but it’s not mandatory.
“This is optional. Patients choose to download the app and patients want this, in general, patients want this,” he said.
The NLMA isn’t satisfied with that response.
“If the message from NLHS is: If you think you are going to get bad news, don’t look up your results. Well, that’s not human nature. If you get a message saying that a result is available to you, human nature is that you are going to look it up,” said Slade.
“It’s not about restricting people’s access to their results. We want people to have access. We want people to be strong advocates for themselves,” she said. “To be engaged with us as partners in their health-care plan but we want to do it with the appropriate context and we want to be compassionate and that’s really what we feel is missing here.”
