Once a cancer diagnosis is confirmed, a patient's life is not only altered but there is a lot to learn as they make care decisions.

"For cancer survivors and those managing a recent diagnosis, having access to online medical records via patient portals or smartphone-based health apps is critical," said researchers from the U.S. Health and Human Services in a new report that examines the use of electronic health information.

WHY IT MATTERS

Using data from the National Cancer Institute’s nationally representative Health Information National Trends Survey (HINTS), researchers from HHS' Assistant Secretary for Technology Policy and Office of the National Coordinator for Health IT analyzed the access and use of health information by individuals with cancer, survivors and others from 2020-2022.

In the new data brief, ASTP/ONC officials said that 80% of those with a recent cancer diagnosis were offered access to their online medical records between 2020 and 2022, representing a 38% increase over those newly diagnosed and offered electronic health record access from 2017-2018.

The researchers looked at nearly 10,000 survey responses from HINTS 5 Cycle 4 (2020) and HINTS 6 (2022) in their quest to assess the impacts of health communication, finding that rates of EHR access were higher among individuals with a recent cancer diagnosis (82%) compared with cancer survivors (71%) and those who never had cancer (72%). 

Of the recently diagnosed in the study, 40% accessed their online medical records or patient portal six or more times in one year, compared with about a quarter of cancer survivors (26%) and those who have never had cancer (23%). 

Viewing their test results and clinical notes online, messaging providers 24/7, and downloading or sharing information with their growing care teams can enable patients to take an active role in their treatment and survivorship journeys.

"Frequent access among individuals with a recent diagnosis may be attributable to more frequent healthcare visits following a diagnosis," the researchers said. They also noted that studies have shown that patient portal use is associated with greater perceived patient-centered communication among cancer patients.

Those patients new to coping with cancer in the study had higher rates of using multiple electronic methods to access their online medical records. Nearly all looked at test results, and more than half said they had multiple patient portals – 59% said they had 2.2 portals on average.

As cancer patients make their way to survivorship, the use of EHRs, however, dwindles.

Compared with those with a recent cancer diagnosis, cancer survivors (52%) and those HINTS survey respondents who never had cancer (47%) accessed their online medical records once a year.

Interestingly, survivors reported having fewer patient portals – 48% said they have 1.2 on average, compared with 1.7 portals on average for those who never had cancer (43%). 

THE LARGER TREND

Many providers have focused on giving cancer patients critical data to help them understand their specific condition and engage them in shared decision-making.

As a pioneer in virtual care delivery, the Cleveland Clinic has also looked to help oncology patients confront their diagnoses and make decisions with online access to specialists via telehealth, said Frank McGillin, CEO of The Clinic by Cleveland Clinic. 

Telehealth has only improved the care experience for cancer patients, McGillin told HealthcareITNews last year.

"People are confused," he explained. When confronted with multiple treatment options, they want to know the best course for them and seek second opinions from the provider's specialists.

ON THE RECORD

"Patient portals and smartphone-based health apps, which help enable individuals to manage information from multiple online medical records or patient portals, can help bridge the gap in cancer care by providing an electronic means of navigating care and facilitating patient-provider communication," the HHS researchers said.

Andrea Fox is senior editor of Healthcare IT News.
Email: afox@himss.org
Healthcare IT News is a HIMSS Media publication.