Have you ever waited days for a doctor to call you back with test results or, even worse, had to find time in your schedule to go in-person? Thankfully, those days are over since a federal law mandated immediate electronic availability of nearly all test results and other information in 2021.
A recent survey of more than 8,000 adults published this spring in JAMA Network Open found that an overwhelming majority of patients — 95.7% — supported receiving test results as soon as they are available via secure online patient portals. This was true even if test results were abnormal or if their health care provider had not yet reviewed those results, surveyors found. The study and a related webinar in June from the federal Office of the National Coordinator for Health IT provide inspiration for story ideas.
The survey was conducted last May by researchers at four academic medical centers: Vanderbilt University Medical Center in Nashville; the University of Texas Southwestern Medical Center in Dallas; the University of California at Davis; and the University of Colorado Anschutz Medical Center. Researchers sent the survey to 43,830 patients and caregivers who had accessed medical test results from one of those centers using the patient portal; 8,139 responded.
Some patients (7.5% of the study population) reported that reviewing results before they were contacted by a health care practitioner increased worry, but increased worry was more common among respondents who received abnormal results.
One important caveat is that the study results were mostly from white, middle-aged women who spoke English, so additional research is needed for other demographics, study co-author S. Trent Rosenbloom, M.D., M.P.H., said during the webinar. Another question requiring more study is whether abnormal test results for serious illnesses such as cancer should be handled differently, Rosenbloom added.
The work piggybacked on a 2021 study performed at Vanderbilt University Medical Center demonstrating that once clinicians started releasing test results without delay through their patient portal, the number of patients accessing results increased fourfold. Rosenbloom, a professor of biomedical informatics at Vanderbilt, stated that the number of messages patients sent to health care teams within six hours of seeing results doubled.
On June 27, the U.S. Department of Health and Human Services released its final rule implementing information-blocking penalties, including fines of up to $1 million per violation for individuals and entities. The agency is developing a separate rule to establish penalties for health care providers.
Even with information blocking rules in place, an April 2023 study found that 42% of hospitals still reported observing information blocking practices by health care providers, health information networks or exchanges and health IT developers.
Story ideas from the webinar
Among health systems using Epic as its electronic health record system, about 93% of test results were sent out within 24 hours, and 97% went out within 14 days, said Sean Bina, vice president of access and patient experience at Epic, during the webinar. “Patients are getting access to their results at a level that’s never historically been available in the past,” he said. About 77% of test results are being reviewed by patients in patient portals, and about 90% of all clinic notes are being released to patients.
Participants in the June Department of Health and Human Services webinar discussed the movement supporting patient access to health information in the new rule’s wake. The information and trends mentioned by panelists provide some story suggestions journalists can consider:
- Having immediate access to test results allows patients time to view the results at home with their loved ones and be better prepared with questions for their next doctor visit.
- The rule supports patient choice to view test results online or continue to receive information from their doctor.
- Having immediate access to results can allow patients to track their care even while they’re hospitalized and allows caregivers the chance to stay abreast of what’s happening if they need to leave the hospital bedside to use the restroom or get a meal, or go home for the night.
- Having advance notice of test results means some patients have time to arrange for childcare or someone to cover a work shift before their next health care visit.
- Some physicians are engaging in “pre-counseling,” explaining that they are ordering a particular type of test and what it may or may not show so that patients are prepared.
- There are still some areas in which to improve. Some patients find errors in their test results, and others want more detailed information to compare to prior results. Still others want images like pathology slides.
- What is the potential of artificial intelligence or other digital health tools? For example, if someone gets an upsetting test result, is there a nurse navigator or social worker available on-call? What about a chatbot?
Resources:
- Supporting Ready Patient Access to Test Results – June 5 webinar from the Office of the National Coordinator for Health IT
- Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal – study from JAMA Network Open
- New Study Shows Patients Prefer Immediate Access to Test Results and have Unmet Information Needs – blog post and audio interview with study authors from the Office of the National Coordinator for Health IT
- S. Trent Rosenbloom, M.D., M.P.H., study coauthor; vice chair for faculty affairs; and professor of biomedical informatics with appointments in medicine, pediatrics and the School of Nursing at Vanderbilt University: trent.rosenbloom@vumc.org
- Kevin Eike, spokesperson/press contact for the Office of the National Coordinator for Health IT at the Department of Health and Human Services: kevin.eike@hhs.gov
Information on federal information-blocking regulations:
- Patients can now access all health information in electronic record sets – AHCJ story post by Karen Blum from October 2022
- Find out how to prepare your audiences to respond if they find errors in their medical records – AHCJ story post by Kerry Dooley Young from December 2021
- Federal information blocking rule: What health care journalists need to know – AHCJ story post by Cheryl Clark from September 2021
- New federal mandate should allow freer flow of medical information – AHCJ story post by Karen Blum and Kerry Dooley Young from July 2021
- Information Blocking Claims: By the Numbers – website from the Office of the National Coordinator for Health IT
