Category Archives: Health data

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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Finding data that can bolster your pandemic reporting

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

Following the pandemic numbersEver since John Snow pieced together how cholera spread from a water pump in London in 1854, data has been key to learning how epidemics spread and what it will take to finish them off.

This recorded panel, from AHCJ’s Summit on Infectious Disease in November, features experts in biosecurity, vaccines and health disparities. Continue reading

Inspection data could prompt stories about COVID-19 problems in hospitals

About Jeff Porter

Jeff Porter is the director of education for AHCJ and plays a lead role in planning conferences, workshops and other training events. He also leads the organization's data collection and data instruction efforts.

patient on ventilator

Photo: Ninian Reid via Flickr

AHCJ has updated its public Hospital­Inspections.org website to give people a better glimpse of potential COVID-19 problems at some hospitals around the country. For reporters, the inspection reports may prompt news stories on how local hospitals are handling the pandemic.

The data covers January 2011 through the third quarter of 2020. A search for the term “covid” returns 73 records of hospital inspection reports from March 25 through Sept. 16. Continue reading

Call for applications opens for AHCJ-National Cancer Reporting Fellowship

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

A group of journalists will spend three partial days online with experts from the National Institutes of Health in January to increase their understanding of and ability to report accurately on complex scientific findings, provide insight into the work of cancer researchers and to better localize cancer-related stories. Continue reading

Employers and insurers paid hospitals 247% more than Medicare rates, new study shows

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.

Photo: stevenharman via Flickr

Research released today shows that from 2016 through 2018, self-insured employers and commercial health insurers in 49 states and the District of Columbia paid 247% more, on average, than what the Medicare program would have paid for the same inpatient and outpatient hospital services.

Researchers from RAND analyzed hospital claims data from 3,112 hospitals in every state except Maryland, which was excluded because the state has an all-payer rate setting model in which hospitals charge prices that are equal to what Medicare and private insurers pay, the report explained. The claims totaled $33.8 billion and came from self-insured employers, six state all-payer claims databases and health plans from 2016 to 2018. Continue reading