Category Archives: Core Topics

New study highlights privacy questions in teenagers’ electronic health records

About Karen Blum

Karen Blum is AHCJ’s core topic leader on health IT. An independent journalist in the Baltimore area, she has written health IT stories for publications such as Pharmacy Practice News, Clinical Oncology News, Gastroenterology & Endoscopy News, General Surgery News and Infectious Disease Special Edition.

Photo by Evolution Labs via Flickr.

Adolescent online patient portals can be set up confidentially so information about pregnancy testing, sexually transmitted diseases, mental health, and drug and alcohol use, etc., are kept private from parents and guardians. But a new study published in JAMA Network Open from three children’s hospitals revealed that more than half of adolescents’ accounts were inappropriately accessed by parents and guardians.

The study suggests there is more work to do both in designing these portals and in educating parents and their teens about them, the authors said.

Study methodology

Participating sites included Stanford Children’s Health in Palo Alto, Calif.; Rady Children’s Hospital in San Diego; and Nationwide Children’s Hospital in Columbus, Ohio — all of which allow adolescents to have patient portal accounts. Guardians can register for proxy accounts.

Investigators used a natural language processing algorithm to analyze all messages sent from patient portal accounts for 13- to 18-year-olds from June 2014 through the end of February 2020 to identify notes sent by parents/guardians. Some manual reviews at each institution were also performed. The study looked for either third-person references to the adolescent, phrases such as “my child,” or incidences where the signature matched the name of a guardian on file.

A closer look at the results

Researchers analyzed 25,642 messages sent from 3,429 adolescent accounts across the three institutions. After adjusting for sensitivity and specificity of the algorithm, they found that an estimated 64-76% of all accounts with outbound messages were accessed by parents and guardians. Parent access decreased as patients aged, from 59-64% in records for 13- to 14-year-olds to 40-50% in those for 17- to 18-year-olds.

Compliance with federal regulations and state confidentiality and consent laws for adolescents requires a reliable mechanism to share protected health information without guardian knowledge, the authors said. Thus, the study suggests that adolescent portal accounts as they exist today may be lacking.

“The 21st Century Cures Act has encouraged the sharing of health information with patients, which we totally endorse and really want to happen,” said senior study author Natalie Pageler, M.D., the chief medical information officer for Stanford Children’s Health, and a clinical professor of pediatrics and medicine at Stanford University, in a phone interview. “It’s the right thing to do for patients and families. But we think this issue [of parents accessing their teenagers’ accounts] is under-recognized…Many parents are getting access to information that they shouldn’t be, which creates a risk for teens.”

This includes the risk that if teens don’t trust that they have a confidential relationship with their provider, they won’t seek the care they need, Pageler said. Worse, for some teens there may be a risk of physical violence or retribution from parents.

According to Pageler, teenagers should have their confidential accounts, and parents can set up a proxy one granting them access to other health information that doesn’t fall under the above-mentioned categories. But it’s tricky, as state laws regarding consent can vary.

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Report shows consumers could save even more on health insurance

About Joseph Burns

Joseph Burns (@jburns18), a Massachusetts-based independent journalist, is AHCJ’s topic leader on health reform. He welcomes questions and suggestions and tip sheets at joseph@healthjournalism.org.

Image courtesy of The Commonwealth Fund

Reporting on how much consumers will save on health insurance under the American Rescue Plan Act (ARPA) has never been easy, but last week, it got more complicated.

Previous studies on how ARPA would affect household spending on health insurance underestimated the effects of the law, according to a report on Oct. 6 from the Commonwealth Fund. That means consumers could spend much less out of pocket for copayments and deductibles if Congress passes the reforms being debated now under budget deliberations. The increased savings come because of a recalculation of the effects of ARPA, the fund reported.

Although the recalculation didn’t get much coverage, this story is important for journalists because the increased savings could be in the billions of dollars. In addition, the reforms proposed in Congress would cut the number of Americans without health insurance by 7 million, the fund reported.

In a report the fund published in September, “The Coverage and Cost Effects of Key Health Insurance Reforms Being Considered by Congress,” researchers from the Urban Institute noted that members of Congress have proposed a budget this year that includes reforming the Affordable Care Act (ACA) in two ways. One reform would make permanent the enhanced premium subsidies in ARPA that otherwise would expire at the end of next year. The other reform would fix what’s called the Medicaid coverage gap by extending eligibility for subsidies on the ACA marketplaces to people earning below 100% of the federal poverty level (FPL) in the 12 states that have not expanded Medicaid.

In those 12 states (Alabama, Florida, Georgia, Kansas, Mississippi, North Carolina, South Carolina, South Dakota, Tennessee, Texas, Wisconsin and Wyoming), Medicaid eligibility for adults is strictly limited. The median annual income limit for a family of three is just 41% of the FPL, or $8,905. Also, childless adults are ineligible.

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Tips for reporting on what experts say could be a tough flu season for the elderly

About Liz Seegert

Liz Seegert (@lseegert), is AHCJ’s topic leader on aging. Her work has appeared in NextAvenue.com, Journal of Active Aging, Cancer Today, Kaiser Health News and other outlets. She is a senior fellow at the Center for Health Policy and Media Engagement at George Washington University and co-produces the HealthCetera podcast.

As cases of the Delta variant start to wane, infectious disease specialists have a new concern this fall — flu and pneumonia, especially in vulnerable populations like older adults.

Experts from the National Foundation for Infectious Diseases (NFID) and the CDC expressed concern about a potentially serious flu season at a video press briefing on October 7.  Flu cases during 2020-21 were extremely low— just 2,124 confirmed cases between Sept. 27, 2020, and May 15, 2021— thanks in large part to people working from home, wearing masks, social distancing and practicing good hand hygiene.

But as more communities ease restrictions, the flu could surge this year, impacting many more people. For seniors, whose immune systems are weaker than younger adults, that could mean an increase in hospitalizations, cases of pneumonia, or even deaths.

“The medical and public health community are preparing for a potentially vigorous respiratory virus session in the United States,” said William Schaffner, M.D., NFID medical director, who moderated the briefing. “The best way to prepare is to get your flu vaccine.”

Vaccination is especially important among at-risk populations, including adults 65 and older, and those with certain chronic conditions according to Schaffner.

Currently, the U.S. is on track for similar flu vaccination rates as 2020, about 52% overall, according to CDC director Rochelle Walensky, M.D., M.P.H., who participated in the briefing.  That rate may not be good enough this year to keep case rates low.

A recent NFID survey revealed that even among those who are at high risk for complications, nearly 1 in 4 (23%) were not planning to get vaccinated this season. While most people over age 65 (71%) said they will get a flu shot, 30% of seniors would remain unprotected, leading to potentially serious consequences.

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How to cover the 2021-2022 flu season

About Bara Vaida

Bara Vaida (@barav) is AHCJ's core topic leader on infectious diseases. An independent journalist, she has written extensively about health policy and infectious diseases. Her work has appeared in the National Journal, Agence France-Presse, Bloomberg News, McClatchy News Service, MSNBC, NPR, Politico, The Washington Post and other outlets.

Photo courtesy of the CDC

As it does every fall, the CDC is urging Americans to get their annual flu shot. Last year, flu was rare because Americans stayed home and wore masks to prevent the spread of COVID-19. This lack of flu from 2020 to 2021 (flu season generally occurs between October and May) could mean a potentially severe season this coming winter, CDC director Rochelle Walensky, M.D., M.P.H, said.

“When there is an active flu season one year to another, then we have…some protective immunity from the season prior,” Walensky said at the Oct. 7 flu season media briefing co-hosted by the CDC and the National Foundation for Infectious Diseases (NFID) and several health providers. “We do not have a lot of protective immunity from last season and because of that, we are worried” about the most vulnerable populations including children, pregnant people and those 65 and older.

Last year, public health officials warned of a “twindemic” of both COVID-19 and the flu, but the worst of their fears did not materialize. Public health experts believe behavior restrictions implemented to prevent the spread of COVID-19 (i.e., social distancing, mask-wearing and online learning in schools) also prevented the spread of the flu. This year, with many of the COVID-19 restrictions lifted, the public health community is bracing for a surge.

Public health officials are concerned that possibly because of vaccine fatigue, 44% of Americans were either unsure or didn’t plan to get vaccinated against the flu, and 25% of them are at high risk from flu complications, according to this NFID survey.

“Frankly, we are alarmed by the large number of people who said they won’t get vaccinated,” said William Schaffner, M.D., NFID’s medical director and professor of preventive medicine and infectious diseases at the Vanderbilt University School of Medicine.

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A national focus on health equity: important updates for reporters

About Melba Newsome

Melba Newsome is AHCJ's core topic leader for health equity and a veteran freelance journalist with more than 20 years’ experience. Her health and science features have appeared in Health Affairs, Oprah, Prevention, Scientific American, Chemical & Engineering News and North Carolina Health News.

Photo by IRRI Photos via Flickr

Social determinants are well-known factors in individual health outcomes, but the coronavirus pandemic appears to have created urgency in the White House and Congress to highlight and address health equity.

Shortly after being sworn in, President Joe Biden announced a new presidential-appointed position, the Special Presidential Envoy for Climate, and a National Climate Task Force. In one of his first executive orders, Tackling the Climate Crisis at Home and Abroad, Biden said he would elevate climate change and underscore the administration’s commitment to address it. Continue reading