Featured image by Ted Eytan (and the same one appears on the homepage – thanks, Ted!)
I’ve been sprucing up this site over the last few months, with help from my talented friend Anastasia Miller. It’s been a fun project to work on as I re-enter the private sector and think about how I want to contribute to the world. Thanks for sticking with me through the quiet of my federal service, when I didn’t post very often, and this time of reflection and refreshment.
A few of the changes (and two requests):
Anastasia and I whittled down the blog post categories to just seven: beauty and wonder; demographics; key people; peer-to-peer health care; positive patterns; public Q&A; trends & principles. Plus there’s always the greatest hits page and of course the hurly-burly tags and search (now at the bottom of every post).
A new feature is the research page, which lists some of the essential findings of the health and technology portfolio at the Pew Research Center’s Internet Project. Thanks to a suggestion from E-patient Dave, I helped Pew Internet create “fact sheets” for our most popular topics — internet access, social media use, mobile device adoption. It turns out that a no-frills rundown of the latest data is a perennially popular item, so when Pew Internet took down the health fact sheet, I recreated it here and added links to relevant blog posts.
- A request: Please let me know what you think of the research page — should it have more data? Less? More links to blogs and other relevant material? Fewer?
I also wanted to use this site to highlight two of the communities I’ve helped nurture: What if health care…? and Invent Health.
- A request: Please continue to post your contributions to those conversations by using the #whatifhc and #InventHealth hashtags on Twitter. And check out my Storify channel, including newer collections like peer-to-peer health advice and words that annoy in clinical care.
Finally, I’m experimenting with ways to feature some of the truly stellar comments that people have written over the last 10 (!) years. Watch this space: Get Inspired. And again, thanks for being here!
Glad to see you again. Welcome back!
Thanks!!
Susannah, I find this research page so useful. I appreciate having the things I use most as a scientist at my fingertips. I have been so grateful for the contribution you made to this research space over the years. My colleagues and I cite these important references to add strength our own work. Most of us do not have the power or access that PEW has for this kind of research and I believe it is time to look at EACH of these important topics again as things are changing so rapidly. Who can we contact or what can we do to encourage more National-level, high quality research to build on what you have started? Thank you!
Thanks, Perry! I agree and have started to talk with colleagues in the research & funding sectors to see if there is interest in reviving some of the work we did at Pew Internet.
Here are some questions I’m particularly interested in updating for 2017:
Thinking about the LAST time you had a serious health issue or experienced any significant change in your physical health… Did you get information, care or support from… [INSERT ITEM; RANDOMIZE]?
– A doctor or other health care professional
– Friends and family
– Others who have the same health condition
[IF YES AND INTERNET USER: Did you interact with them ONLINE through the internet or email, OFFLINE by visiting them in person or talking on the phone, or BOTH online and offline?]
Thinking about the LAST time you went online for health or medical information… Did you go online to look for information related to YOUR OWN health or medical situation or SOMEONE ELSE’S health or medical situation?
Have you ever gone online specifically to try to figure out what medical condition you or someone else might have?
Apart from looking for information online, there are many different activities related to health and medical issues a person might do on the internet. I’m going to read a list of online health-related activities you may or may not have done in the last 12 months. Just tell me if you happened to do each one, or not. (First,) in the last 12 months, have you…
– Gone online to find others who might have health concerns similar to yours
Still thinking just about the last 12 months, have you posted a health-related question online or shared your own personal health experience online in any way?
On your cell phone, do you happen to have any software applications or “apps” that help you track or manage your health, or not?
—–
What would you add, either from past Pew Internet health surveys or other sources? What new questions should be asked?
Hi Susannah, Great to see you here! As both a patient and a family *carer* advocate, to the above I answer yes, yes, and yes: I can think of 3 medical challenges me & my family have faced since last December: a new VTach arrhythmia (Jamie), a cardiac anomaly in my own echo, and, presently, my 98-yr-old MIL Millie: in addition to C6 and L3 spinal fractures sustained during 2 falls last week, she was apparently also brewing a UTI which caused delirium and agitation. After the 1st 12 hour stint in the ED, leaving at 2 am, we got a 3 am by-phone diagnosis of a rare aortic serious problem which was withdrawn 5 hrs later… Also navigation in community settings has begun to shift: at MWMC in Framingham where I was born and where my MIL has received routine local care for ~50 yrs (25 miles to Boston for angioplasty, etc.) they chose to briefly stabilize then move her to Boston within 2 hrs, claiming their MRI was not available, and that they were not equipped (no neuro on weekends / after hours) to manage Trauma. That is like a massive sea change out here in the ‘burbs. She’s been at BIDMC ever since and was just cleared for ST Rehab.
So, yes, each time I heard a new term, diagnosis, medication, treatment, or even learned that community hospitals no longer do trauma care – whatever – I research and read as much as I can, following links until I get a better picture. After that, I sort of curate and copy links to my own Notes pages, then share sites that were especially helpful or answered most of my Q’s.
Also as a 3rd generation member of the Framingham Heart Study, I had my triennial 7-8 hr physical back in May. (My thinking is, being born into *research royalty* comes with responsibilities: so if anyone ever invites me to be in a study, I say Yes.) I’m now the proud wearer/ owner of a Series 0 Apple Watch, plus a Withings wireless BP cuff, all so FHS can big-brother my exercise, activity, BP, etc and download all my info.
Was also in a (2 MRIs, 5 EEG / weekly feedback) study at UMass Med School Center for Mindfulness as part of the 8 week MBSR course I took, enrolled in Judson Brewer’s latest study seeking to learn whether real-time neuro feedback (RTNF) is of benefit to those of us newly beginning a practice of meditation.
(Sharing about both research studies because both have exposed me to health and mindfulness Apps I otherwise would not know about, and which have set me on a path to learn more and *engage* to get healthier.)
Off to check M into her rehab bed. I look forward to reading more here and receiving updates.
Best,
Tami
@bostonheartmom
Whoosh! I held my breath reading the first two paragraphs and then LOL’d at “research royalty.” Indeed I bet you are a super-user when it comes to health tracking! Here’s hoping for a quiet weekend for you and your family.
I have SO many research questions in this space but have attached a handful of ideas. Of course these are just my thoughts and not carefully constructed questions for a survey.
1. I would like to know more about the peer health experience. If it was good why? If they did not find it useful or felt unwelcome, why?
2. Is the online peer health environment welcoming and useful for older adults with chronic illness? How could that be improved?
3. How did the individual find and choose their eHealth tools (Internet, apps, IOT, portal, etc.)? Does your provider team know you use them? Do they approve? Do they participate with you using those tools?
4. When I enter health data into the internet, a portal or app I know where that information goes? Do I know who sees that information? Do I know that the information is safe and secure?
5. When I enter health information into the Internet, a portal or app I get feedback or communication about that health information from my provider team or the creator of that app or system? The feedback is personalized and useful?
6. What can health technology developers do to improve the systems you use?
7. I think we always need to explore the troubling space of the digital divide. Do you access the internet? How do you access the internet? Is you access reliable? Do you trust your access will be available when you need health assistance?
8. Do you have functional limitations that inhibit your ability to access the Internet or other eHealth tools?
Excellent questions – thank you!
Regarding the potential downsides of peer health advice seeking — love the simplicity of “Was it a good experience? Why?” I’d want to pair it with “Was it a bad experience? Why?” (again, this is just the gist, not exact wording).
On my post entitled “How did you find your people?” there was a good discussion about the challenge of never finding a peer. Or finding someone who shares your health condition or diagnosis, but doesn’t have the same outlook or is at a different life stage. Some people never get out of the starting gate and I’d want to capture that in a survey, too.
Regarding health data security, my former colleagues at the Pew Research Center released a study in January 2017 that doesn’t go straight at your questions, but may provide some hints and models for future research: “Americans and Cybersecurity: Many Americans do not trust modern institutions to protect their personal data – even as they frequently neglect cybersecurity best practices in their own personal lives”
Pew Research also released data on people living with disability last year (note: I don’t like the wording of the headline): “Disabled Americans are less likely to use technology”
When I wrote a similar report in 2011, we conducted regression analysis to isolate disability as a factor:
“Fifty-four percent of adults living with a disability use the internet, compared with 81% of adults who report none of the disabilities listed in the survey.
Statistically speaking, disability is associated with being older, less educated, and living in a lower-income household. By contrast, internet use is statistically associated with being younger, college-educated, and living in a higher-income household. Thus, it is not surprising that people living with disability report lower rates of internet access than other adults. However, when all of these demographic factors are controlled, living with a disability in and of itself is negatively correlated with someone’s likelihood to have internet access.”
Here’s an e-patients.net post I wrote about that study — as usual, the comments were even better than what I wrote.
Thank you! I have been using those fact sheets when teaching the New Media and Health Communications at TCNJ. My students appreciated them and most likely drove some traffic to them. I was upset that they were gone this spring, but I’m so glad you got the Research back up here!
It would be great if you continued your great work with Pew Internet health surveys.
I would like to delve more into the ways digital health helps people: does it help the more affluent or everyone? How do different categories of people use digital tools for health?
I love the Research page. In looking through the stats I realized I have shared a few of the data points you have listed when I present to groups on “support in 140 characters”. Great to have them in one spot.
Thanks too for the link to your Storify page- happy to have helped you with gyn cancer support.
Dee
Hi and always delighted to see your typeface! Love your research page, a real treasure trove for all of us who need quotes, facts and stats as we continue to work on our wide and growing list simpatico aims (now including #Overtreatment and #choosingwisely for me).
You are right that much of it is happening in different ways and different locations than we might have predicted a year ago (wry grin) but the tribe of healthcare innovators you helped us form and inspired us to sustain, is very much alive!
Looks nice!