I’ve been a fan of Pew’s reports on health and the Internet for quite some time, but now I’m a superfan.
Just today, Pew has published a health report focusing on caregivers: Family Caregivers Are Wired for Health. Based on survey data collected in Aug-Sept of 2012 from 3014 adults, Pew found that 39% of respondents were caring for an adult or child with significant health issues.
The whole report is interesting, but here are some particular findings that caught my eye:
- Pew’s survey found that 30% of adults were caregivers in 2010, compared to 39% now.
- This strikes me as a big jump; I’d love to eventually learn more about just what went into this increase. (Is an aging population and increased chronic disease burden enough to explain such a jump in 2 years?)
- 86% of caregivers have Internet access; of those, 84% went online to research health topics. In comparison, 64% of non-caregivers with Internet access went online to research health topics.
- I’m not surprised that caregivers are doing more research; families often seem more worried to me than patients do.
- 39% of caregivers are helping to manage medications.
- The report doesn’t say how many medications they have to manage. But if you have someone else involved in your care, I’m guessing it’s a lot of medications. I’d love to eventually find out how many meds caregivers deal with on average.
- Caregivers are more likely than non-caregivers to tap both online and offline information sources, such as clinicians, friends/family, or patient communities. Pew reports that “thirteen percent of caregivers were in contact with a clinician both online and offline, compared with 5% of non-caregivers.”
- This is good, 13% of caregivers with access to clinical help online and offline. But we need to make it better.
- One in three caregivers tracks a health indicator for a loved one. Of these, 44% track in their heads, 43% use paper, and 8% use an app.
- As a clinician, I often rely on caregivers to give me the information I need to help address their loved one’s symptom. We definitely need to make it easier for them to track on paper or electronically, as this supports better clinical collaboration between patient, caregiver, and clinician.
- 41% of the caregivers who track end up sharing the tracked information with another person. More than half of the caregivers who track report sharing the data with a health professional.
- This is good and I hope to see these numbers go up over the coming years.
All in all, this is a fascinating report and hopefully will generate some much needed attention to the need to educate and support caregivers.
If this topic is of interest to you, I’d also urge you to read Susannah Fox’s related blog post at e-patients.net, which is here. In it, she remarks
“Let’s stop there and consider: we have a large and growing group of people who are trying to conduct on-the-job training for themselves using the internet. They are more likely than other adults to have internet access and a mobile device. Many of them act like the kid who sits in the front row of every class, taking copious notes, clapping erasers for the teacher (anyone younger than 40, ask an older friend to explain). And yet if this report could be seen as a report card for how we as an online community are serving them, frankly it’s a D+.”
I myself am not sure just what grade I’d give the online community and digital health community when it comes to supporting caregivers…
But I think we can all agree that caregivers are very important, especially to those of who serve the elderly. Caregivers certainly need better support, education, and tools. This report should help spur additional attention to this essential issue.
Nice work, Pew!