Patient data access increases, supports healthcare navigation

Cancer patients have higher digital patient engagement than their peers with no history of cancer, with new data from the Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT showing more patient data access among those with a recent cancer diagnosis.

This is good news, ASTP added, considering the emphasis the White House has placed on patient navigation and data access for cancer patients.

"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 to managing complex health needs, such as viewing lab results or clinical notes, communicating with providers, and sharing information with caregivers and other providers involved in their care," the newly rebranded office wrote in a data brief.

Overall, 65% of individuals with a recent cancer diagnosis were offered and accessed their digital medical records between 2020 and 2022, a noted increase from the 40% who did the same between 2017 and 2018.

It's also more than those without a cancer history who accessed their data, ASTP said. Of those who have never had cancer, 47% have been offered and accessed their digital medical records.

What's more, patients with a recent cancer diagnosis accessed their patient portals more often than their peers without cancer. Four in 10 patients with cancer accessed their digital health records six or more times within a year; only 23% of those without cancer did the same.

When it comes to the method of data access, cancer patients and those without cancer were more similar, the ASTP data showed. For example, similar proportions of patients with and without cancer diagnoses accessed their digital records via an app and a website (31% and 28%, respectively).

Additionally, patients with and without cancer access their medical records and patient portals for most of the same things.

Cancer patients primarily look at their patient portals to view lab tests, with 93% reporting as much. For patients without a history of cancer, that figure was 88%. About three-quarters (77%) of cancer patients used their patient portals to look at clinical notes compared to 68% of folks who've never had cancer. Meanwhile, about a third of each group downloaded their health information.

But the similarities ended there. The ASTP data showed more record-keeping burden for individuals with a cancer diagnosis, revealing that 59% have more than one patient portal. This is compared to 43% of those without a history of cancer who have multiple patient portals.

Having more than one patient portal or digital health record is a function of visiting multiple providers. Most people have a patient portal with their primary care provider, but cancer patients are more likely to also have a patient portal with another kind of specialist (51% versus 31% for those without cancer).

This can be good and bad news. While it is beneficial for patients to have access to their health records from multiple providers, limited interoperability between digital systems could make it hard for patients to manage multiple portals. Separate data has shown that care coordination is a significant detriment to the patient experience.

Still, patient data access is a key priority for the White House.

"Patient portals and apps can help patients navigate cancer by enabling easy, secure access to information needed to manage their health and care," the report authors concluded. "Looking forward, it will be important to ensure that emerging tools and technologies are widely accessible to patients and navigators in various stages of navigating cancer survivorship or a recent diagnosis."

Sara Heath has covered news related to patient engagement and health equity since 2015.