Welcome to the Health Care Social Media Review! This is one of those “blog carnivals” that’s hosted twice a month at different relevant sites, in this case highlighting “the best and the brightest health care social media writers, thinkers, users and proponents worldwide, to contribute to better understanding and adoption of social media in health care.”
In the words of the most recent host, “Social media use continues to increase at a dizzying pace, and the health care world faces unique opportunities and challenges in utilizing it. There is tremendous potential for improved health, better medical awareness, and increased patient satisfaction if social media is used correctly…”
So true! And we believe the set of posts we’ve compiled here bring great perspective to all these issues.
We’re honored to be hosting what we call the almost-Valentine’s edition (#46), with a focus on the emotional and psychological side of medicine.
What’s loving kindness got to do with healthcare?
Just about everything… as our opening entry attests.
Hopefully you caught this video snip that went viral last week by Morgan Gleason, a 15-year-old diagnosed with Juvenile Dermatomyositis (JDM) when she was 11. She’s spent waaaay too much time in hospitals, and is definitely NOT feeling the love.
As the Huffington Post reports, she’s had enough.
Remember that without social media, none of us would hear Morgan’s voice — nor the voice of any patients. Viva la social media!
ePatient Britt Johnson at The Hurt Blogger is also sharing the bold truth about what it feels like to live with the recurring searing pain of migraines. Britt’s a Stanford MedX ePatient Scholar, and uses her Social Media voice at her blog to raise awareness and money for rheumatoid arthritis research.
From our own diabetes community, Kerri Sparling of Six Until Me comments on patients like Morgan and Britt being brutally honest via social media in her post “How Real Do You Want It?” Kerri’s conclusion: “Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet. While it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.”
On the flip side, Dr. Margaret Aranda on her blog Perseverance talks about the tragic consequences when patients’ pleas for help are ignored — especially young women whose symptoms may be nebulous and therefore difficult to diagnose. The post “Invisible No More” is written by an MD who was in a tragic car accident; after seven years of being bed-ridden with dysautonomia, a traumatic brain injury (TBI) and central diabetes insipidus (DI), she started to improve.
Dr. Aranda reports: “She had over 6,000 Facebook friends by then, most of them younger women with chronic illnesses that significantly and negatively impacted their quality of life. When her health improved, she wrote a blog telling her audience, friends and sufferers alike, that she would never forget them, and that she would continue to fight for the cause. Epilogue: In January 2013, a neurologist thought she was faking illness, and he let her fall to the hardwood floor during the physical exam when she closed her eyes while standing. She sustained another TBI with DI, and remains mostly bed-ridden.” Not good.
From KevinMD.com comes a brief but impactful post titled Be Emotionally Intimate with Your Patients, by Pamela Wible, MD: “When doctors are fully present, vulnerable — even emotional, patients are more likely to be honest, transparent, and open.” Yes, this post is about in-person visits, but if it weren’t for social media, you wouldn’t have physicians and patients all over the country reading and commenting on how to improve on what used to be called “bedside manner” (105 comments at press time)
And at Rock Health Blog, an interview with the founder and CEO of Covered.com Noah Lang is titled “Why Patients Need to Be Treated Like Consumers.” Among other smart observations about how people choose coverage plans, Lang says: “In the midst of the social media revolution, I witnessed both the underbelly of the personal data trade and the beautiful experiences that can be built when that data is used effectively… Personalization is not a commonly used word in healthcare. The “payer” focus is traditionally on the population, rather than the individual. I think it can be done a different way, particularly if we want to liberate individuals and families to direct their own health spending.” Amen to that!
On the lighter side, our DOC friend Mike Lawson of the Diabetes Hands Foundation and his own blog Socially Diabetic muses about what it would be like if his broken pancreas was on social media. Really, what would your ailing organs say if they could Tweet, Facebook and make Instagram postings all on their own?
For example, would Twitter know if your pancreas were depressed? This fascinating article from the TIME business blog explains How Twitter Knows When You’re Depressed ricocheted around social media in the last 10 days. “With its 230 million regular users, Twitter has become such a broad stream of personal expression that researchers are beginning to use it as a tool to dig into public health problems.” Woot! And you thought Twitter was just for playing when you’re bored at work…?
OK, but should you be cautious about using any online services that are for free? As in, what’s the business model? David Williams of Health Business Blog is exploring the pros and cons of “free” healthcare websites this week. “Websites that charge nothing to their users are pretty cool. But before you use them, consider how they’re making money and if you’re comfortable with what they’re doing with data about you,” he cautions.
Over at diaTribe, they’ve got a great resource called “Social Media for PWDs” (people with diabetes) written by none other than SM maven Dana Lewis. In “Learning Curve,” she provides a great intro for everyone from the newbie to the skeptic.
Kim Vlasnik of TextingMyPancreas has written a piece about self-tracking and diabetes, and how unlike using new-fangled technology for enhanced communication only, sensors and tracking devices “out her” about what’s otherwise an invisible disease. And she resents that. Man, there are a lot of layers to how we feel about these new tools.
On this same topic, Kim was part of a Jan. 28 hour-long #MedX online chat including several other e-patient advocates (read: Hugo Campos and Katie McCurdy). Worth checking out if you’re at all interested in issues of “patient adherence.”
And we certainly hope you all noticed the diabetes community’s Valentine’s Day initiative Spare a Rose, Save a Child, which uses social media to help those who don’t have access to the kind of care we’re used to in developed countries. See this post by D-Advocate Heather Gabel over at the Diabetes Hands Foundation, who describes it this way: “Beyond patient engagement, diabetes advocates in the DOC have found strength and power in numbers and come together to create, manage, and sustain a yearly initiative called Spare a Rose, Save a Child. Bloggers, Facebookers, Tweeters, LinkedIners, and RedditHeads are all talking via social media to bring awareness to this timely collaborative campaign. Spare a Rose, Save a Child is a gleaming example of how social media can be used as a platform for empowered and connected patients to positively impact the landscape of diabetes worldwide.”
It might surprise you to know that while ePatient Social Media still seems to be booming, there’s a robust conversation going on among healthcare providers about “The Slow Death of the Medical Blogosphere” — as reported by Dr. Wes Fisher, MD:
“… it is harder to be a cheerleader for social media when I see the mounting challenges real care-taking doctors and nurses are asked to face. After all, not only are we tasked with the responsibility of being care givers, we are also being tasked with negotiating minefields of codes, becoming typists, consulting as business efficiency experts, and serving as social psychologists, too. If we could just add another eight hours to every day.”
In a response at 33Charts, Bryan Vartabedian, MD, says he’s not surprised at the decline of “a world connected by nothing other than blogrolls, dynamic comment threads and the memorable blog carnival.” He believes that true creativity is key, and that video, images and microblogging are becoming the preferred vehicles instead of long-form writing. His conclusion: “I don’t think public doctors are going away. We just share, create and relate differently.”
Susannah Fox at ePatients.net is a healthcare professional of another ilk: a “health-internet geologist” at the Pew Research Center. She recently experimented with “flipping” her use of social media, by posting her slides publicly in advance of an upcoming presentation. The result was that her slides were viewed 1,200 times on Slideshare before she ever presented, and she got lots of valuable input that way. Now that’s creative
Returning for a moment to our Love theme, check out Susannah’s report of a clinical trial in Kenya, which confirmed that human kindness is the secret ingredient to health and mobile phones are an ideal delivery system. At least that’s her interpretation. Which led me to another, older post of her’s titled “What Is the ROI on Love?” Three and a half years later, these Mayo Transform talks are still worth watching — about the power of empathy and personal friendships in healthcare settings.
Did you hear that FDA has finally published its long-awaited Social Media Guidance for Pharma companies? As reported by “PharmaGuy” John Mack, it’s all about mitigating risk and correcting misinformation.
At his respected Pharma Marketing Blog, John’s published a 2014 edition of the Social Media Timeline (embedded below) which “documents some of the key events in pharma’s social media quest, including its triumphs and tribulations.”
John also offers a link to more on the fate of pharma social media pioneers — who have NOT felt the love from their companies in recent years (many are departed). There’s something we’d like to see change.
And you can join the (unrelated) HCSM weekly chat on Twitter, too.