I have a new post up on Medium, illustrated with this gem from a 2012 post:
We can’t let misinformation—or worse—go by without comment.
I think it’s time for more people to speak up in health care.
More pediatricians should express their measles outrage.
More people should chronicle the reality of living with chronic conditions.
More people wearing medical devices should demand access to the data being collected.
More people should speak up about medical errors before—and after—they happen.
More patients and caregivers should be included in the audience, on stage, and in the planning of health and medical conferences.
And, of course, we all need to learn to listen when people speak up.
On a personal level, I’ve been reflecting on why I spoke up that day.
Just thinking about the incident makes my palms sweat. It was not polite. It was disruptive. But I had to speak up on behalf of the thousands of people who had taken time out of their day to answer the survey that was being cited incorrectly. We owe it to those respondents to be cautious in our interpretation of the data.
I also didn’t stand up alone. I had colleagues sitting right there next to me — the Medicine X community — and I had a respected institution — the Pew Research Center — on my name tag. I could almost hear the voice of Scott Keeter, the Obi Wan Kenobi of survey research, in my head as I formulated my response.
But what about people who are alone or feel unqualified when they spot misinformation or an error about to happen?
How might we help more people feel empowered to speak up?
How might we help people to see that they have a superpower? We all do.
We all have the ability to connect, in real time, with our virtual colleagues and friends: all the people who have trusted us with their stories, all the people we have helped and who have helped us, even in small ways. This is what the internet has created: connection across time, space, and hierarchy.
No matter where you are, no matter who is challenging you, you have the support of a team behind you. But only if you’ve nurtured your network in good times so that they are ready to help you through bad times.
All the work that we do in our online and offline communities pays off when we need help. The network is our superpower.
So feed your network. Borrow some courage. Speak up. It’s time.
Laura Kolaczkowski says
This is so timely because I have an article due to be published online next week that challenges the 3 dominate players in – MS drug treatments, information technology and imaging. I challenge the readers to think about the consequences of what looks so good. And I also reference your Mike Mulligan blog.Thanks for reminding me that someone has my back; it’s good to have someone to keep me company. best, Laura
Susannah Fox says
Laura, I’ll look for your article! And thanks 🙂
Amen! But I think what outrages me even more is the ubiquity of misinformation about vaccines on the Internet. Or misinformation about anything pertaining to healthcare. People turn to the Internet often when they are most desperate for information about their own health or that of a loved one, and it’s discouraging that the first three pages (let alone the top five search hits) are usually nonvetted websites filled with someone’s opinions or anecdotal experiences rather than evidence-based data.
I have a fantasy that in the next decade medical information will be available on the Internet in a classed-based system. In order to be a Class A medical information website you need to provide references from reputable sources for all of the information that is on your site, the information should be free from commercial bias, and you need to demonstrate that the information is systematically reviewed and updated periodically. To be a Class B or Class C site, you may not have to live up to all these other standards, but it would be clear to any Internet consumer which kind of site they were on. I’m sure that to some this sounds like an infringement of First Amendment rights, but to me (an outraged pediatrician), some of the information available on the Internet regarding the dangers of vaccines smacks of yelling “fire” in a crowded theater.
Susannah Fox says
Chris, I love this vision of a Class A, B, and C for online health information. What do you think of the latest Google tweaks, which appear to set Mayo Clinic pages above everyone else’s — or at least featured to the side, with illustrations?
Also, have you heard about the initiative to get medical students to edit Wikipedia pages? I know a couple of the people involved and am fascinated by the possibilities. Here is a NYT article about it:
And, of course, the Wikipedia page:
Also, in case you want to geek out on health care economics, Dan Munro wrote a reply to my Medium essay:
Pamela Ressler @pamressler says
Great post, Susannah. I have your back, my friend, and I am not alone. The community is what gives us the courage individually and collectively to put ourselves out there with more vulnerability than we might have otherwise…truly our superpower 🙂