How did we come here?
Prior to the provision of the Cures Act, doctors had different approaches to giving patients their test results. Some offices contacted patients within hours or days; others sent paper results by mail. Some would take a “no news is good news” approach, only sharing results if they revealed something concerning; others waited to share the results in person.
Lawmakers hoped to standardize how we get results and increase transparency, said Micky Tripathi, national health information technology coordinator at the US Department of Health and Human Services. With the Cures Act provision on disclosure of medical records, there was to be no more questions, waiting, or time spent trying to find answers.
“We should embrace modern Internet conventions,” Dr. Tripathi said, which includes making information accessible to consumers as soon as it is available. “I think that’s the normal expectation of the internet that we all have.”
Genevieve Morris, chief executive of health tech firm Change Healthcare who in a previous role helped draft the Cures Act, said she believes patients have become accustomed to not having access to personal data. “We now have to adapt to a world where we are going to have all of our data at our fingertips,” she said.
Many patients I have spoken to have appreciated having direct access to their health information. “I feel more in control,” said Yasi Noori-Bushehri, 32, an engineer in San Diego who has Graves’ disease, an autoimmune condition that requires her to closely monitor her thyroid hormone levels. Access to her medical information gave Ms Noori-Bushehri the confidence to request changes to her treatment plan: when her doctor suggested changing her thyroid medication, she pointed to previous lab reports suggesting that the change could throw his hormones out of whack. After talking about it, the doctor agreed.
Some patients said receiving test results — even difficult ones — before speaking with their doctor made them feel more prepared when they went online. “You can go to the next appointment after you’ve done your homework,” said Teresa Christopherson, 59, who receives regular updates on her breast cancer status via an online portal. She said it gave her the opportunity to “ask the right questions” about next steps. “Everyone has the right to have access to their own medical information in real time, not on the doctor’s time,” she said.
Many doctors also said they support instant access, in most cases. “If your cholesterol level has gone up, that might not be good news, but it’s not the same as finding out you have a lung nodule on a chest X-ray,” Dr. Resneck said. .
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