Study Recommends Patient Portals be Designed with Families in Mind

Ryan Black

Users consider digital patient portals very useful for helping family members manage their care. A new study argues that access sharing should be encouraged.

Digital portals allow patients to manage prescriptions, appointments, and test results. Millions of Americans are given access to them annually by their healthcare providers, but researchers from Kaiser Permanente Northern California pose that they may be even more useful if they are intended for use not just by the patient, but also by familial care partners.

More than 40 million Americans act as care partners for family members. Despite that, there is very little data about how often those family care partners are given access to their relatives’ patient portals, though one of the few studies that the researchers found put the number at less than 1%.

In a survey of over 1800 patients with chronic conditions, over 76% were given access to a patient portal. More than a quarter of those with portal access shared it with a care partner, overwhelmingly a spouse (62.2%) but sometimes a child or grandchild (34.9%) or a parent or grandparent (10.6%).

The survey, which ran from March to December 2015, asked portal users if their access was formal (granted by the provider) or informal (using the patient’s login), and also asked them to stratify their user experiences.

Less than half of the care partners (45.5%) had their own login access to the portal: the majority used the patient’s login information. Overwhelmingly, respondents enjoyed the system, with over 90% reporting that it was both more convenient and faster than other ways of organizing their or their loved one’s health information. Open-ended responses were equally positive, with respondents stating that patient portals increased engagement with clinicians and helped them care partners help family members across geographic distances.

The researchers recommend that, “Physicians and health systems should view portals as a means of communicating with families, not only patients, balancing care needs with privacy concerns.”

While patient portal sharing can be beneficial, previous studies have found that it can also raise privacy and autonomy concerns, particularly depending on the demographics and preferences of the patient whose information is being accessed. Another report published in JAMA Internal Medicine in 2015 found that “elders do not want to feel ‘spied on’ by family,” and concluded that there was no “one-size-fits-all” approach to portal sharing.

That study also concluded that future patient portals be designed with an eye towards sharing preferences of patients, potentially through a tiered access system that limits or enables override of certain commands depending on the user.