Pew: Caregivers are top digital health users, but only 59 percent find online tools helpful

By: Jonah Comstock | Jun 20, 2013        

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New research from the Pew Internet and American Life Project shows that adults who are unpaid caregivers for a parent or child use online and mobile health tools considerably more than the average American, but only 59 percent of connected caregivers find internet tools helpful in giving care. Fifty-two percent said that online tools helped them deal with the stress of being a caregiver.

“If this is a first report card about how the internet as a health community is serving caregivers, frankly it’s not very good,” said Susannah Fox, associate director of the Pew American Life Project. “Fifty-nine percent is a D+. Caregivers, I now think of them as the student who sits at the front of the class and writes down everything the teacher says, doing extra credit homework and pursuing information as far as they can. And yet only 59 percent who have internet access say that the internet has been helpful. Where’s it falling short for them? That’s the question that remains.”

pew caregiver dataThe telephone survey of 3,014 American adults found that 39 percent of Americans are caregivers, up from 30 percent last year. Adults who care for an adult made up 36 percent, while 8 percent care for children with chronic health conditions or disabilities. The increase is notable, because it’s some of the first hard demographic data to prove that, as the population ages and people with diseases live longer, the number of caregivers increases.

Even more interesting, however, is that Pew collected a wealth of data about caregivers’ online habits compared to noncaregivers, even after controlling for other demographic factors.

“Fully 86 percent of caregivers have internet access, compared with 78 percent of non-caregivers,” the study reads. “And 84 percent of caregivers with internet access say they went online within the past year to research health topics such as medical procedures, health insurance, and drug safety. By comparison, 64 percent of non-caregivers with internet access say they did online health research in the past 12 months.”

Caregivers present a market opportunity

The Pew data has specific implications for the market opportunity for digital health, suggesting caregivers could be a group to target for a number of different technologies in the startup market today. For instance, 39 percent of caregivers manage medications for the person they care for, but only 18 percent of those (7 percent of all caregivers) use online or mobile tools for medication management. A number of startups are focused on medication adherence, including Vitality Glowcaps and AdhereTech, and many already market to caregivers.

Caregivers are more likely to own a mobile phone than non-caregivers (87 percent versus 84 percent) and more likely to use it to look up health information (37 percent versus 27 percent). This has implications for most mobile health and app companies, and we’ve seen some recent startups like Unfrazzle focusing on the connected caregiver.

This has been a big week for news about physician rating and cost comparison tools, and Pew’s study also looked at how much caregivers and non-caregivers use those services.

“One area of online peer advice that continually confounds industry observers is the relative unpopularity of rankings and reviews of doctors, hospitals, and drugs,” Fox and her co-authors write in the study. “While 8 in 10 internet users say they have researched a general product or service online, only 2 in 10 internet users have looked up health care reviews.” The study found that caregivers were more likely to use those services, but only to a point — only 22 percent of caregivers had gone online to look at reviews of doctors or providers.

“Here’s a situation where we have a group of people, looking just at caregivers, who are voracious information consumers, really looking for all kinds of health information to take care of their loved ones,” Fox told MobiHealthNews. “And they’re a good market for consulting this sort of material, but still the high point is one in four. That’s still a fraction of the potential.”

Caregivers and self-tracking

Pew revisited their recent data on self-tracking to see if those numbers were different for caretakers. The overall percentage of self-trackers is slightly higher — 72 percent of caregivers vs 69 percent of Americans total. There was no difference between caregivers and the general population in whether or not they used digital tools to track health data — only about 21 percent did.

However, caregivers are more likely to share their tracking data with a doctor, friends and family, or online. Among caregivers, 41 percent share their tracking data, as opposed to 24 percent of non-caregiver self-trackers. And caregivers are more likely to act on their tracking information — 72 percent said tracking either affected a health decision, led them to ask a doctor new questions, or affected their overall approach to health or caregiving, compared to 56 percent of non-caregivers.

Fox thinks the data is important because it shows that becoming a caregiver is significant — it changes one’s engagement with the healthcare system demonstrably. It can also be detrimental to the caregiver’s health.

“Caregivers are more likely, unfortunately, to have personally faced a medical emergency in the past 12 months,” Fox said. “There’s clinical studies that show that being a caregiver can have a significant negative effect on someone’s health, because they’re stressed, they put someone else ahead of themself.”

But, Fox says, she hopes this data will help to bolster those growing ranks of caretakers.

“A lot of people don’t call themselves caregivers, they just see themselves as being a dutiful daughter or son, doing the work that’s required of them,” she said. “What I hope we can do by shining a light on this group is help people to recognize themselves in the data and recognize that there are online tools that can help them.”

  • caregiving

    Hi–I began working with family caregivers in 1990 so witnessed the evolution of the caregiving experience. The experience 20 years ago seemed quieter. It’s frenetic now–with treatments, options, intense decisions. It’s also a tight time squeeze. Family caregivers have very little time and very little patience. If a tool doesn’t work, they’ll immediately stop using it. They just don’t have time to figure out a technology that’s not simple and easy. This is critical for any company creating a tool for a family caregiver–it must provide an immediate solution. Otherwise, it won’t be used.

  • Matt LM

    Caregiver Homes is a program of training, nurse and social worker support, and financial assistance for caregivers to Medicaid-eligible consumers who need help every day with bathing, dressing, walking, etc. We believe that no one can care for family like family, and we are available to help if you live in Mass, RI, Ohio, and Indiana. See stories and check out our caregiving blog at http://www.caregiverhomes.com. Thanks Matt

  • HappyHealth.me

    Like Denise mentioned with Caregiving, we’ve designed a simple tool for patients and/or caregivers to make registering with new doctor’s offices easier and with less redundant paperwork.

    Check out our Smart PHR at HappyHealth, and see how you can easily store basic health information then auto-fill the registration paperwork for new doctor’s offices. It’s simple, but it gets the job done!

  • Jim Edmonds

    I have used eCareDiary (www.ecarediary.com) for about 3 yrs to help me care for Mom who has Alzheimer’s. It has been so helpful. It allows me to track appointments, medications, assign tasks to people and store important documents all online. It also has great articles and even a social media component where I can connect with other caregivers. I would recommend it to others caring for a loved one.

  • Arick Morton

    I strongly suggest CareSolver (www.caresolver.com) for managing an aging parents care. I have used it to manage all aspects of my Dad’s care for the past year and it’s been a god send! You get a step-by-step care plan personalized for your Loved One and a ton of tools and resources to help you care!