Most Cancer Patients Prefer Learning Their Diagnosis From a Clinician, Not the Portal
核心洞察
A survey of nearly 2,500 cancer (搜索) patients found that 75% prefer receiving a new or recurrent cancer diagnosis from a clinical team member rather than through the patient portal.
Only 7% of respondents learned their initial cancer (搜索) diagnosis via the portal, but the rate quadrupled to 27% for recurrence notifications.
Nationally, 58% of patients viewed test results before discussing them with their clinician, yet only 28% were given the option to decide how results would be communicated.
The 21st Century Cures Act's information-blocking provision, which took effect in 2021, requires health care systems to immediately release nearly all patient test results. While this policy aimed to improve patient access to medical records, new research reveals a significant disconnect between the speed of electronic result delivery and what cancer (搜索) patients actually want when it comes to life-altering diagnoses.
A survey of 2,412 patients diagnosed with cancer (搜索) at UT Southwestern Medical Center (搜索) found that 75% of respondents would prefer to receive information about a new or recurrent cancer diagnosis from a clinical team member — either through an in-person or telehealth visit (48%) or by telephone (27%). Only 25% said they would want that communication delivered through the patient portal.
"With these test results now going so quickly, there is the possibility that patients find out that they have cancer (搜索) initially from the portal, before they ever hear from a clinical team," said David E. Gerber, MD, medical oncologist and professor at Simmons Comprehensive Cancer Center at UT Southwestern Medical Center (搜索). "We were interested in what that experience was like."
How Patients Are Actually Receiving Their Diagnoses
Most patients (84%) reported receiving their cancer (搜索) diagnosis from a clinical team member, either during an in-person or telehealth visit (59%) or via a phone call (25%). Only 7% of respondents said they found out through the portal — a rate Gerber described as "lower than we anticipated."
The picture shifts dramatically when examining recurrence notifications. Among respondents who experienced a cancer (搜索) recurrence, 67% received the information from a clinician, while 27% learned through the portal — a rate approximately four times higher than for initial diagnoses.
"The likelihood of patients learning about a cancer (搜索) recurrence first from the portal was four times the rate of learning about an initial cancer diagnosis that way," Gerber noted. He suggested several possible explanations: patients may already be using the portal more frequently to track their cancer care, societal shifts toward electronic communication, differences in portal policies between health systems, or the possibility that some patients receiving an initial diagnosis via the portal did not understand what those results meant.
Among patients who learned of their recurrence through the portal, only 14% spoke with their clinical team within one day. That rate increased to 45% at three days and 78% at one week.
The Experience of Portal Diagnosis
For patients who received their cancer (搜索) diagnosis through the portal, 71% were at home and 59% reported being alone when they viewed the results. Nearly half (48%) turned to the internet for more information, with more than one-third spending at least five hours online researching before contacting their clinicians.
"These people are not already in the cancer (搜索) care system. There's a very good chance they have never met an oncologist because this is their initial cancer diagnosis," Gerber said. "In 2026, most patients getting a portal message notification are not sitting down at a desktop computer or laptop and opening an email. It's probably in real time, hearing a smartphone ding, and once they see it ding, they press to get the test result. They don't know before they press that link what the test is or what the result may look like."
National Data on Result Viewing and Understanding
A separate nationally representative survey — the Health Information National Trends Survey (HINTS) 7, conducted in 2024 with 6,045 respondents — provides broader context. In 2024, 70% of patients nationally viewed test results in their patient portal, and more than half (57.6%) viewed test results before discussing them with their health care provider (HCP). Among portal users, those rates climbed to 92.4% and 76%, respectively.
Critically, only about one-quarter of patients (28%) and one-third of portal users (33.3%) reported being given the option to decide whether they wanted to receive test results before their HCP could discuss the results with them.
Two-thirds of patients (66%) reported understanding test results they viewed before hearing from their HCP "well" (32%) or "very well" (34%). This stands in contrast to the 89% of patients who indicated it was "somewhat" or "very" easy to understand information in their patient portal generally, and the 89% who reported that HCPs "usually" or "always" explained information clearly during health care visits.
Digital Literacy and Provider Encouragement Matter
The HINTS data revealed significant disparities in both portal engagement and understanding. Patients with higher levels of education and digital literacy were significantly more likely to view test results in their portal and before hearing from their HCP. For instance, 71.1% of college-educated patients viewed results before hearing from their HCP compared to 30.8% of those with less than high school education.
Provider encouragement emerged as the factor most strongly associated with viewing test results: 82.7% of patients encouraged by their HCP to use the portal viewed results there, compared to 26.2% of those not encouraged. Similarly, 70.1% of encouraged patients viewed results before HCP discussion versus 24.3% of those without encouragement.
High digital literacy was most strongly associated with understanding of results viewed before HCP discussion (77.4% vs. 53% for low digital literacy). Patients encouraged to use their portal by their HCP were also more likely to indicate they understood results viewed before discussion (67% vs. 54%).
Policy Implications and State-Level Responses
The information-blocking provision carries significant enforcement weight — hospitals and medical institutions could face fines of up to $1 million for violations. Previous research from Gerber and colleagues showed that the median time from a test result being posted in the electronic health record to a patient viewing it decreased from 77 hours to 6.4 hours since the act's implementation, and the number of patients who saw results before their ordering clinician doubled from 37% in 2017 to 75% in 2022.
In response to these concerns, California, Kentucky, and Texas have all signed laws allowing health care systems to delay posting cancer (搜索)-related and other sensitive test results to the portal.
"California is one of the most liberal states in the country. Texas is one of the most conservative. Yet there seems to be clear agreement across that aisle that maybe this is something we need to revisit," Gerber observed.
The issue extends beyond oncology. Gerber recounted stories from emergency department physicians about patients who left waiting rooms without being seen after viewing test results on their phones — including one patient with a negative X-ray for foot pain who later returned with a torn Achilles tendon, and another with a negative rapid strep test who came back with a life-threatening tonsillar abscess.
"I don't know the best scenario for every person. I'm not sure that what we were doing before the 21st Century Cures Act was always the best scenario, and I'm not sure what we're doing since is always the best scenario," Gerber said.
The HINTS study authors concluded that while patients overall are highly engaged with immediately released results, "there may be missed opportunities to address differences in patient preferences around notification of newly released results." They noted that most vendor systems do not routinely offer functionality allowing patients to specify their preferred timing for the release of specific test results without custom configuration, which "may limit opportunities for patients to indicate their preferences around the timing of result release in their patient portal."
Researchers acknowledged limitations in both studies, including response and recall bias, the single-center design of the UT Southwestern survey, and the subjective nature of self-reported understanding measures in the HINTS analysis.