Patients doing more of their own research online, often leaving doctor's office with questions

The majority of Americans don’t fully understand the information their provider tells them, leading them to consult third-party resources like the internet, a new survey found.

And patients often don’t fully grasp their own personal medical information, according to the survey by the American Health Information Management Association Foundation. 

Three in 4 Americans leave the doctor confused and dissatisfied for reasons that include disappointment in the level of Q&A they have with their doctor, confusion about their health and a need to do more research, according to a survey of 1,000 U.S. adults. The study was commissioned by the foundation and conducted by Kelton Global.

This communication breakdown prompts many patients and caregivers to turn to other resources, like going online, to fill in the holes and take their health management into their own hands.

In fact, 11% of Americans not in a caregiver role leave more confused than they were before the appointment. Nearly 1 in 4 Americans also do not feel comfortable asking their doctor certain health questions, the survey found. 

These feelings are even more prevalent among caregivers, with 20% reporting being confused after the appointment. Nearly half report being concerned about their loved ones’ ability to communicate with their provider, and nearly a third don’t believe their loved one can easily access their own health information. They are also more likely than others who are not in a caregiving role to do additional research following an appointment.

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Millennials are more likely than any other generation to be in this role and are more likely than older generations to reach out to people they know as opposed to their provider when seeking health information.

In general, 42% of Americans research their doctor’s suggestions after a visit. Of those, 80% turn online to do so. Nearly 9 in 10 Americans feel confident in the information they find on the internet, and a third feel they learn more there than from their doctor.

However, more than half of Americans never access their health records. Many don’t anticipate the process being easy. Of those who do access their information online (81%), more than one-fifth doubt whether it is secure. The majority of Americans unilaterally agree that if they had access to all their health information, their health and confidence in it would improve. 

Americans with a lower level of education and with a lower income are less likely to feel comfortable asking questions, understanding their health records and knowing where to find them. Finally, Hispanic patients are more likely to feel confused and check their records just after a visit than their Black and white counterparts. 

The healthcare industry is making strides to open up patients' access to their own health data. In March, a new regulation went into effect that gives patients easier access to their digital health records through their smartphones.

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Micky Tripathi, Ph.D., the new national coordinator for health IT under the Biden administration, recently said the information blocking rules, along with other interoperability rules mandated by the 21st Century Cures Act, represent a "paradigm shift for the industry" by putting patients in control of their health data.

The new information blocking and interoperability regulations will open up an app ecosystem that enables patients to engage with healthcare on their smartphones and through health apps.

There is a growing patient demand for access to health information from their smartphones. Among individuals offered a patient portal, more than 6 in 10 accessed it at least once in 2020, an 11 percentage point increase from 2017, according to recent data from the Office of the National Coordinator of Health IT (ONC).

Nearly 4 in 10 patient portal users accessed their health information using a smartphone health app in 2020. About a third of patient portal users downloaded their online medical record in 2020; this proportion has nearly doubled since 2017.

Individuals encouraged by their healthcare provider to use their patient portal accessed and used their portal at higher rates compared to those not encouraged, ONC data showed.