Erin Moore, the mom-warrior who created that video, also wrote this essay: Are patients a distraction? I think not…
Watch, read, cry, be inspired. I sure am.
Have you ever wondered what it’s like to have Cystic Fibrosis?
Reply
“Learning is a lot more fun—and a lot more effective—when it’s social. Tweet & NEVER eat alone.”
Quote
– Mike Nelson, in one of 17 “nuggets” of wisdom he tweeted today. Click through on all the links. They’re worth your time.
Thank you, Susannah Fox (the other one, that is)
One year ago this week I ported over five years’ worth of posts from e-patients.net and launched this blog. But I have never shared the story behind the susannahfox.com domain name (and there is a story). Here it is: Continue reading
Measuring patients’ use of online health resources: example questions
Here’s a question I received recently from a clinician I met at a conference. He had expressed interest in the Pew Research Center’s health and technology surveys and was now following up:
We are in the process of revising our patient forms and this may be a good time to add 1-2 questions that might best assess e-health utilization for the purposes of future data retrieval. Can you share examples of the questions I can use?
My reply is below, shared in the spirit of public Q&A so other people can contribute and we can learn together. Continue reading
Mother’s Day
I filled out a form recently which asked: What motivates you to innovate? Without hesitation I typed in “Motherhood.” I had no idea that having kids would rewire my brain so fundamentally, but it did.
A few posts to contemplate on Mother’s Day…
Mothering Cal: What I learned from parenting a terminally ill child, by Maria Kefalas
Twin Tuesday: Breastfeeding Twins, by Danielle Jones
In sickness and in health (Her mother’s perspective on reading Lisa Bonchek Adams’s blogposts about metastatic cancer), by Rita Bonchek
I love being a working mom, by Wendy Sue Swanson
Oh, and put down your mimosa or you’ll spill it:
One voice, many inflections: HIV clinical trial communications
I’m re-sexifying the top of this post since it’s so long and I want people to get these key take-aways (read on for details on each one):
- Expect clinical trial participants to share news with their networks. Plan accordingly.
- Make your information attractive and share-able where people already are, on Facebook, Tumblr, Pinterest, etc.
- Find your local Lady Gaga.
- New Coke is a model for what not to do when engaging a community.
- “Re-sexify” a repetitive message because there are some things you can never say enough.
- Integrating a new social media tool is like having a new employee, it’s that much of a productivity hit.
I participated in the National Institutes of Health’s HIV/AIDS Clinical Trials Networks Communications Symposium on May 9, 2013, sharing Pew Research data about internet and cell phone use across the globe and, in particular, how people in the U.S. gather and share health information, online and offline.
My notes from the discussion are below, but I make no claims about them other than I wrote down stuff I was curious about or thought would have universal application: Continue reading
Big data, red flags, better health?
A new interview with Stephen Wolfram on “why he thinks your life should be measured, analyzed, and improved” popped up on the same day that American Medical News ran a story advising clinicians to look for “red flags” like unfilled prescriptions and delayed screenings since it may mean the patient has lost their job or is having transportation trouble.
What if the big data vision of ubiquitous surveillance comes true and people are monitored — and helped — to a much greater degree than they are now?
No answers, just questions, but I thought I’d share. What do you think?
An aside: I love how MIT Technology Review lists “upcoming articles” at the bottom of their Big Data Gets Personal feature. I may steal that for upcoming research reports and blog posts (no dates attached, just ideas I know I’ll write about).
How should a youth-focused sexual health clinic incorporate social media and SMS into their work?
Continuing my series of public Q&A sessions, I’ll share the following:
We are working on an innovation concept paper to a local foundation and would like to explore how to better use social media and SMS at youth-focused sexual health clinic. We need to be able clearly articulate the benefits of social media and SMS for health care access for youth and young adults. I hope you can provide some resources that may be able to help.
I began with basics:
Pew Internet Trend Data: Adults
Pew Internet Trend Data: Teens
Digging deeper:
The most recent report on Teens and Technology and the most recent in-depth report on Health Online.
And finally, some blog posts relating most closely to your inquiry:
The State of New Media and HIV
Health, Technology, and Communities of Color
You might consider texting as a mode of communication – don’t miss the discussion in the comments on this post:
Is there hope for SMS health alerts?
(Now it’s your turn: what would YOU share? What advice do you have for this newcomer to social media? Comments are open.)
“Googling is a sign of patient engagement”
Wrap your head around that idea. It’s one of the many insights I learned from reading Let Patients Help — and I’m freaking quoted in that chapter!
But that’s E-patient Dave, seeing things that nobody else sees and, in this case, making up words like “boogloo” (Bing + Google + Yahoo).
As he writes: 81% of U.S. adults use the internet and 72% of them have sought health information online in the past year (see: Pew Internet: Health). This is not a sign of the health information apocalypse, he and Danny Sands say, but a sign of a groundswell. What if, instead of dismissing people’s interest in doing some quick (or in-depth) research online, clinicians gave them some guidance? That’s their advice: “If patients don’t know how to do the Boogloo safely, don’t stop them from engaging — teach them how…The solution is not to restrict and constrain. Empower the people: enable, and train.”
If you’re interested in getting up to speed fast on patient engagement, Let Patients Help is your passport.
How do (older, lower-income) patients learn?
Rebecka Sexton of the Center For Innovation at the Carilion Clinic in Roanoke, VA, emailed a great question and I’d like to share it more widely:
We are working on a project here at Carilion on chronic diseases related to Population Health Management related to COPD.
I am specifically working on the education component from a service design perspective and am trying to better understand how COPD patients learn, where their pain points are related to education, what they need education about, etc. The learnings will result in solutions and recommendations to Carilion Clinic. Of course, the social media and technology component enters in because COPD patients are often older and in western Virigina, on Medicaid and many can’t read although they might have phones. I am also considering that education occurs through conversations online too. I am wondering if you can suggest anything for me to look at related to this topic.
My reply:
I’m working on two upcoming reports that will hopefully be useful to you: how family caregivers use the internet, especially for health; how people living with chronic conditions use the internet, especially for health. We will update and expand on our previous reports about these groups:
Family Caregivers Online (2012)
Peer-to-Peer HealthCare (2011)
Chronic Disease and the Internet (2010)
In case you haven’t yet dug into them, I can also offer a summary of Pew Internet’s health research and links to two blogs I contribute to: e-patients.net and susannahfox.com.
You might also look at some of the work that the California HealthCare Foundation, the Center for Care Innovations, and Ted Eytan, MD, of Kaiser have done related to safety net populations. Here are some links to get you started (I searched for “safety net”):
I also recommend looking at some of the work that Ivor Horn, MD, is doing. For example, in this presentation, she tells a compelling story about how patients, caregivers, and clinicians can better connect:
Now: let’s help Rebecka: What else would you share with her?