Why Health IT Needs to Include Caregivers

Why Your Patient Education Needs to Include Caregivers


In the U.S., 93 million family caregivers (39 percent of adults) provide an estimated $522 billion in care for their loved ones. As a key member of the patient’s health care team, these caregivers are the perfect audience to both use and influence the development of health information technology, says MaryAnne Sterling, member of the Consumer Partnership for eHealth and co-founder of Connected Health Resources. But these emerging tools must support caregivers’ specific information needs. What are these needs, and how can doctors help address them?

What caregivers are looking for

Four in 10 adults in the U.S. are caring for an adult or child with significant health issues, according to Pew Research statistics. Surveys show that 75 percent of U.S. adults age 65 and older are living with a chronic condition such as high blood pressure, diabetes, or heart disease, and that the day to day management of their medical care falls largely on family members and friends who may not be trained. Most caregivers are adults age 30 to 64, and many navigate health care with the help of technology.

Caregivers do many health-related activities at higher levels than non-caregivers. For instance, caregivers are more likely than other adults to:

  • Gather health information online, particularly about medical problems, treatments, and drugs.
  • Research symptoms online in order to find a diagnosis.
  • Consult online reviews about drugs and other treatments (39 percent of caregivers manage medications for a loved one).
  • Read online about others’ personal health experiences.


Why doctors need to educate both patients and caregivers

What this tells us is that doctors need to make sure they are educating not only their patients, but also the caregivers. Since caregivers are not always in the exam room with patients, you need to provide patient education that is shareable and easy to access after the appointment — such as digital materials on your web site or patient portal. This prevents any important information from being lost in translation, and also prevents unnecessary calls to your office to repeat what was covered during the appointment.

Digital patient-education materials make it easy to keep caregivers in the loop. Some doctors place video clips explaining conditions and procedures on their websites, or email them to patients directly. This doesn’t replace face-to-face time with patients or caregivers, but makes that time more productive and ensures that all members of the patient’s care team are on the same page.

Providing high-quality, easy-to-understand information that is branded with your name and practice provides a measure of trust and value to patients and caregivers, and keeps them from Googling their condition and having to wade through the mixed — or even inaccurate or dangerous — results on their own.

Mobile especially important

Nine in 10 caregivers own a cell phone and one-third have used it to gather health information online, according to Pew Research. This is significantly higher than the rate of mobile health searches among non-caregivers at the time of the survey.

When asked about the specific impact of the Internet:

  • 59 percent of caregivers with Internet access say that online resources have been helpful to their ability to provide care and support for the person in their care.
  • 52 percent of caregivers with Internet access say that online resources have been helpful to their ability to cope with the stress of being a caregiver.


“The use of e-resources by family caregivers extends their reach, not only because of the amount of useful information and tools (like apps) that can be found to help in decisions about self care, but also because increasingly, the most efficient access to some vital aspects of health care is migrating online,” writes Jessie Gruman, Ph.D., in a blog post titled “Is the time right for e-caregiving?

It’s also important for doctors to remember that in many cases, patients’ caregivers may not live nearby. Technology allows a son in California to coordinate his mother’s care in Connecticut, and for a patient in Maryland to research the benefits of cataract surgery with his granddaughter in Mississippi.

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