I’m doing a ton of “day job” writing these days, analyzing survey data about how Americans gather, share, and create health information. Here is a rundown of the reports released so far and what’s coming up:
1) Mobile Health 2012 (Nov. 8, 2012) 85% of U.S. adults own a cell phone and, of those, 31% have looked up health information on their phone. Tracking smartphone ownership is key — half have looked up health info and one-fifth have a health app. Here are some mobile-related posts, in case you missed those discussions.
2) Health Online 2013: (Jan. 15, 2013) This is the big general-population report. New findings include: 35% of U.S. adults have gone online specifically to figure out what they or someone else might have; 26% of people looking online for health info have hit a pay wall (and very few pay). The e-patients.net discussion is off to a great start.
3) Tracking for Health: (Jan. 28, 2013) Health Data Tracking (working title; scheduled for release during the week of Jan. 28). 7 in 10 U.S. adults track their weight, diet, exercise routine, or other health indicator. But few use technology to do so. I previewed the basic findings here but the report will dive deep into the demographics, including caregivers and people living with chronic conditions.
4) Caregivers (February). All the questions covered in prior 3 reports, through the filter of people who are actively caring for a loved one, plus some new questions focused only on how the internet informs caregivers’ experiences. It will serve as an update of the Family Caregivers Online report based on a 2010 survey.
5) People living with chronic conditions (March). All the questions covered in prior reports, through the filter of people living with chronic conditions. The closest correlates in our archives are Chronic Disease and the Internet, based on a 2008 survey, and Peer-to-peer Healthcare, based on a 2010 survey.
All of this research is supported by a grant from the California HealthCare Foundation and, of course, the Pew Research Center. Can’t wait to share all that we’ve learned!
(If you have a particular interest in any of the upcoming reports, and promise not to share the results before we publish them, please email me directly and I’ll add you to the preview list: sfox at pewinternet dot org)
This is quite an interesting body of data to have one’s hands on. Boggles the mind to think the directions you could go with it…
I think, in particular, #2 raises the questions of first, where are people going for their health information (evidence-based sources, personal forums, commercially funded sites), and then where does that info take them? Do consumers arrive at their care-center well informed? Do they demand testing for conditions that are unlikely matches for their symptoms? Does their media access aid or hinder their healthcare experience? In short, are there publicly-accessible resources out there that contribute in a positive way to personal health on a micro level and to the healthcare system on a macro level, or is it more just noise and distraction creating more confusion in an already complex system?
I love all these questions! Over on e-patients.net, Joe McCarthy proposed another fascinating idea:
“the information-seeking and/or community-seeking behavior – online vs. offline – may be very different for health challenges for which people are more likely to feel shame (e.g., sexually transmitted diseases or nearly any mental health problem) than those which seem to have broader acceptance in society”
He suggested working with Brene Brown who unpacks the idea of shame vs. guilt in this post:
http://www.ordinarycourage.com/my-blog/2013/1/14/shame-v-guilt.html
Keep the ideas coming!
Thanks for this Suzanne. Root information. I’m especially looking forward to the caregiver report. Honor the caregivers! Help the helpers
Thanks, Danny. Caregivers have been near & dear to my heart for many years thanks to personal experiences — and they are also a quiet army of health care workers, making them an important segment to focus our research on.
One of the best questions in our survey came from a conversation I had with the AARP Public Policy Institute, which has done extensive research in this area (just not related to the internet’s impact):
http://search.aarp.org/source/ppi?Ntt=caregivers
Looking forward to the next 3!
I’m especially interested in the data and analysis surrounding chronic conditions. I can’t remember if I’ve mentioned this before (here or on e-Patients.net), but I highly recommend a book by Canadian physician Gabor Mate, When the Body Says No: Exploring the Stress-Disease Connection. Mate weaves together narratives from his own experiences with patients suffering from a variety of chronic conditions with studies correlating chronic stress with the [onset of] chronic illnesses. The title comes from the consistent correlation between physical manifestation of chronic illness (arthritis, cancer, diabetes, heart disease, IBS, and multiple sclerosis) and the psychological profiles of patients who are unwilling or unable to set appropriate boundaries (e.g., saying “no” to unwanted people, behaviors or activities). Given your love of both narrative and data, I think you would find it highly engaging and illuminating.
Susannah,
I read Health Online 2013 with great interest. I am a resident physician with a research interest in information seeking behavior of patients. Your work has really opened the eyes of physicians across the country who are now beginning to realize the power/scale/impact of the internet as a means for patients to obtain information (whether doctors like it or not). Keep up the great work, you are a pioneer, and I look forward to reading your future reports.
Chad
Thank you so much! That is especially nice to hear after a long day checking and rechecking our analysis for the report being released next week. Very psyched to contribute data to the public conversation, very happy to hear it’s useful.