How did we get here?
Before the Cures Act provision, doctors had different approaches to giving patients their test results. Some offices would contact patients within hours or days; others sent paper results via mail. Some would take a “no news is good news” approach, sharing results only if they revealed something worrisome; others waited to share results in person.
Lawmakers hoped to standardize the way we get results and increase transparency, said Micky Tripathi, the national coordinator for health information technology at the U.S. Department of Health and Human Services. With the Cures Act’s provision on releasing medical records, there was to be no more wondering, waiting or spending time trying to track down answers.
“We should be adopting modern internet conventions,” Dr. Tripathi said, which includes making information accessible to consumers as soon as it is available.“I think that is the normal internet expectation all of us have.”
Genevieve Morris, a senior director at the health technology company Change Healthcare who, in a previous role, helped draft the Cures Act, said she thought patients had become used to not having access to personal data. “We now have to adjust to a world where we are going to have all of our data at our fingertips,” she said.
Many patients I spoke with 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 disorder that requires her to closely monitor her thyroid hormone levels. Having access to her medical information has given Ms. Noori-Bushehri confidence to ask for changes in her treatment plan: When her doctor suggested tweaking her thyroid medication, she pointed to previous lab reports suggesting that the change might throw her hormones out of whack. After talking it through, the doctor agreed.
Some patients said receiving test results — even difficult ones — before speaking with their doctor had allowed them to feel more prepared when they did connect. “You can go into the next appointment having done your homework,” said Teresa Christopherson, 59, who regularly gets updates on the status of her breast cancer via an online portal. She said that gave her the opportunity to “ask the right questions” about next steps. “Everyone has the right to their own medical information in real time, not on the doctor’s time,” she said.
Many doctors said they supported instant access, too, in most cases. “If your cholesterol has gone up, that might not be good news, but it’s not the same as finding out that you have a lung nodule in a chest X-ray,” Dr. Resneck said.