About three years ago, a new member of our Lung Cancer Survivors Support Community posted a message: she was taking Tarceva and wanted to discuss with fellow members everything about that cancer drug.
She titled her post, TARCEVA DIVAS AND DUDES DISCUSSION & SUPPORT. She saw a need to create a community within a community, and beginning with that modest post, she did it. She didn’t ask permission. She didn’t wait for us, or another member, to organize and lead a top-down discussion about Tarceva.
The ongoing discussion string became the place for our members to go to talk about Tarceva and next-generation lung cancer treatments.
The member became known by some as the Tarceva Diva, and for the purposes of this story, that’s what I’ll call her. This story is not specifically about Tarceva, or even about lung cancer, but instead, it’s a celebration of an unsung hero who helped thousands of people.
There have been well over 8,000 posts in less than three years’ time–about 250 posts per month–in just that series of hundreds of “Divas and Dudes” discussion strings. That’s a constant, dedicated stream of treatment insights from-the-front-lines of people worldwide affected directly by lung cancer.
“WELCOME TO TARCEVALAND!!!” she’d proclaim to a new member, or “newbie.” She could insert humor into the discussions without making light of the seriousness of members’ illnesses. The activity in the Tarceva sub-community grew so quickly that the Tarceva Diva created another discussion topic, TARCEVA SIDE EFFECT BUSTERS, which created yet another resource for members.
Continue reading “The Legacy of the Tarceva Diva”
Filed Under: Uncategorized
Tagged: Brian Loew, Cancer, Lung cancer, Patient Communities, Social Media, Support Groups, Tarceva
Feb 27, 2014
The two columns by Bill and Emma Keller about Lisa Bonchek Adams unleashed fury this week from supporters who questioned the manner in which Adams, who has metastatic breast cancer, “lives her disease” through her blog and Twitter feed.
Amid reams of articles, blogs, tweets and Facebook posts, patient advocate and breast cancer survivor posted Liza Bernstein grabbed our attention for posting a brilliant yet simple observation. Responding to an article in Gigaom, Bernstein noted that Bill Keller wrote this of Adams:
“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out…”
And Keller went on to describe what those experts thought.
Bernstein and other e-patients know well that Lisa Adams is an expert. In her response, Bernstein said that while Adams “is not a doctor or a researcher, [she] is a highly engaged, empowered, and educated patient who, as far as I know, has never shared her story lightly.”
Perhaps unintentionally, Keller’s supposition that Adams is a “comfort” to other patients compared with the analysis he provides from “cancer experts” marginalizes what people like Adams bring to others affected by cancer.
Continue reading “In Praise of Lisa Bonchek Adams, Breast Cancer Expert”
Filed Under: Uncategorized
Tagged: Brian Loew, Cancer, e-patients, FutureMed, Inspire.com, Patients, Social Media, Wellness
Jan 16, 2014
Thanks to the technologic allure of iPhones replacing stethoscopes, apps substituting for doctors and electronic information substituting for having to actually talk to patients, this thoroughly modern correspondent is all about medical-social media.
Think Facebook for the flu. Twitter for tinnitus. Egads, listen to the typical consultant, pundit or futurist and it’s easy to believe that we’re on the verge of a silicon-based health care revolution.
But then reality intrudes and some skeptic somewhere always asks about the bang for the buck, the juice for the squeeze, the return for the investment. It’s a good question.
For something of an answer, consider the results appearing in a recently published randomized clinical trial by researchers at UCLA. Over a 4 month period, “at risk persons” were recruited for a clinical research trial with on-line ads (Facebook banners, Craigslist, for example) as well as announcements in community settings and venues. Once subjects met the inclusion criteria and had a unique Facebook account, they were randomly assigned to one of two treatment arms.
One treatment arm used a closed Facebook group to coach persons about their at risk condition. The other treatment arm similarly used Facebook to coach persons about general health improvement. Lay “Peer Leaders,” who were given a three hour training session on “epidemiology of the condition or general health subjects and ways of using Facebook to discuss health and stigmatizing topics,” were assigned to lead the groups.
Peer Leaders attempted to reach out to their assigned group persons with messaging, chats and wall posts. Once the link was established, the relationship in the intervention group included communication about prevention and treatment of the condition. At the end of 1, 2 and three months of the study, participants completed a variety of surveys.
57 individuals were in the control general health group and 55 were in the condition coaching group. According to the surveys, intervention patients were ultimately statistically significantly more likely to agree to condition testing (44%) than the control patients (20%). Because there were few participants, the modest decrease in actual tests or risk behaviors were not statistically meaningful.
This correspondent’s take:
While this was a small study, this is the first time that I have seen reasonable proof that social media by itself can move the behavior needle. On the other hand, this did not result in a patient engagement stampede toward better care or hard clinical outcomes. A majority of participants (56%) did not appear to benefit. Nonetheless, the results do support the inclusion of Facebook-style closed group social media in the suite of population health management services.
Continue reading “Can Social Media Really Influence Health Behaviors? A Small Clinical Trial Argues The Answer Is Yes.”
Filed Under: Uncategorized
Tagged: Facebook, Jaan Sidorov, patient engagement, Social Media, Twitter
Sep 14, 2013
A few weeks ago, a middle-aged man decided to tweet about his mother’s illness from her bedside. The tweets went viral and became the subject of a national conversation. The man, of course, was NPR anchorman Scott Simon, and his reflections about his mother’s illness and ultimate death are poignant, insightful, and well worth your time.
Those same days, and unaware of Simon’s real-time reports, I also found myself caring for my hospitalized mother, and I made the same decision – to tweet from the bedside. (As with Simon’s mom, mine didn’t quite understand what Twitter is, but trusted her son that this was a good thing to do.) Being with my mother during a four-day inpatient stay offered a window into how things actually work at my own hospital, where I’ve practiced for three decades, and into the worlds of hospital care and patient safety, my professional passions. In this blog, I’ll take advantage of the absence of a 140-character limit to explore some of the lessons I learned.
First a little background. My mother is a delightful 77-year-old woman who lives with my 83-year-old father in Boca Raton, Florida. She has been generally healthy through her life. Two years ago, a lung nodule being followed on serial CT scans was diagnosed as cancer, and she underwent a right lower lobectomy, which left her mildly short of breath but with a reasonably good prognosis. In her left lower lung is another small nodule; it too is now is being followed with serial scans. While that remaining nodule may yet prove cancerous, it does not light up on PET scan nor has it grown in a year. So we’re continuing to track it, with crossed fingers.
Unfortunately, after a challenging recovery from her lung surgery, about a year ago Mom developed a small bowel obstruction (SBO). For those of you who aren’t clinical, this is one of life’s most painful events: the bowel, blocked, begins to swell as its contents back up, eventually leading to intractable nausea and vomiting, and excruciating pain. Bowel obstruction is rare in a “virgin” abdomen – the vast majority of cases result from scar tissue (“adhesions”) that formed after prior surgery. In my mother’s case, of course, we worried that the SBO was a result of metastatic lung cancer, but the investigation showed only scar tissue, probably from a hysterectomy done decades earlier.
Continue reading “#MomInHospital”
Filed Under: THCB
Tagged: Bob Wachter, End of Life Care, ER Visits, hospitalization, Hospitals, LEAN, Nurses, Patient Safety, Patients, Quality, Scott Simon, Social Media, Twitter, UCSF
Aug 17, 2013
In the past few years, the fortunate among us have recognised the hazards of living with an overabundance of food (obesity, diabetes) and have started to change our diets. But most of us do not yet understand that Facebook is to the mind what sugar is to the body. Facebook feed is easy to digest. It has made it easy to consume small bites of trivial matter, tidbits that don’t really concern our lives and don’t require thinking. That’s why we experience almost no saturation. Unlike reading books and long magazine articles (which require thinking), we can swallow limitless quantities of photos and status updates, which are bright-coloured candies for the mind. Sadly, we are still far away from beginning to recognise how toxic Facebook can be.
Facebook misleads. Take the following event (borrowed from a Facebook friend). A bloke you knew in high school, whom you’ve not met or spoken to in real life since you left high school, has got married. He posts pictures of his wedding taken by a snazzy professional photographer. The pictures gather hundreds of likes and comments. Your friends shower your high school mate with congratulations. There are discussions about the bride’s dress, the tasty food, the fancy hotel, but absolutely no one knows that the reason they are really getting married is because the bride is pregnant with your mate’s baby. Facebook leads us to walk around with the completely wrong idea about our friends’ lives. So holiday pictures are over-liked. Stressful outbursts go unshared. A new job is immediately updated. Being fired is never made note of. Your friends might subscribe to a lot of “Causes”. In real life they do nothing about those causes.
We are not rational enough to be exposed to Facebook. Watching a video of your mother in a dance club is going to change your attitude towards your parents, regardless of your real relationship with them. If you think you can compensate with the strength of your own inner contemplation, you are wrong. Bankers and investors – who have powerful incentives to keep you hooked so that Facebook can make a profit – have shown that they cannot. The only solution: cut yourself off from using Facebook entirely.
Continue reading “Facebook Is Bad For You – and Giving Up Using It Will Make You Happier”
Filed Under: OP-ED, THCB
Tagged: Akshat Rathi, Facebook, Social Media, Wellness
Apr 15, 2013
Remember 2009? The H1N1 pandemic we were all waiting for? I do. I was pregnant; H1N1 was particularly risky for pregnant women. The vaccine wasn’t available until after I had my baby, but when they held a clinic an hour north of where I live, I brought my husband there so we could both get our shots. My infant son was too young to be vaccinated, so I wanted to protect him through herd immunity.
A study came out recently on twitter messages from that time. How did pro-vaccine sentiments spread, versus anti-vaccine ones? Which messages were more contagious?
I talked to one of the authors, Marcel Salathe, today. He’s an infectious disease researcher studying the spread and transmission, not (just) of disease, but of information. “We assume people infect each other with opinions about vaccinations,” he said, and the H1N1 scare was a good opportunity to put some of his group’s theories to the test.
They collected nearly half a million tweets about the H1N1 flu vaccine. In 2009, H1N1 wasn’t included in the regular flu shot, and became available partway through flu season as a separate dose. With a possible pandemic looming, people had plenty of motivation to get the vaccine and encourage others to get it—butanti-vaccine sentiments were in circulation too.
The result, striking but perhaps not surprising: negative opinions were more contagious than positive ones. (Specifically, someone who read a lot of anti-vaccine messages was more likely to follow up by tweeting or retweeting negative messages of their own.)
Continue reading “Twitter Study of Vaccine Messages: Opinions Are Contagious, But In Unexpected Ways”
Filed Under: Uncategorized
Tagged: Facebook, Google, H1N1, public health, Social Media, Twitter, vaccines
Apr 8, 2013
I’m sure you get a lot of hate mail, especially from folks in my profession, so when you got this letter from me you probably assumed it was more of the same. Let me reassure you: I am not one of those docs. I do think patient privacy is important, and actually found you quite useful when facing unwanted probing questions from family members. I believe the only way for patients to really open up to docs like me is to have a culture of respect for privacy, and you are a large part of that trust I can enjoy. Yeah, there was trust before you were around, but that was before the internet, and before people used words like “social media,” and “data mining.”
But there have been things done in your name that I’ve recently come in contact with that make me conclude that either A: you are very much misunderstood, or B: you have a really dark side.
Continue reading “Dear HIPAA: It’s Time to Decide Who You Want To Be”
Filed Under: THCB, The Business of Health Care
Tagged: E-mail, HIPAA, patient health records, Patient privacy, patient-doctor communication, Physicians, practice management, Rob Lamberts, Social Media
Mar 26, 2013
I really like Twitter. Its scrolling 140-character tableau of news nuggets fit perfectly on my hand held device, lap top and home personal computer. It’s easy to glance at between tasks and the advertising is blessedly minimal. I control the content by following and unfollowing other Twitter accounts with a simple click or a touch.
But why, physician-skeptics may ask, is Twitter any better than traditional web browsing, email, list-servs and handheld apps? I thought about that and am pleased to offer my Top Twelve reasons why every doc should include Twitter in their informatics medical bag.
1. Lit Headlines: The major medical journals use Twitter to efficiently describe their latest content with links.
2. Fame: Traditional print authors are publishing more and more about less and less. Getting peers to follow your original and insightful tweets is the new route to attaining status as an expert. I have more than 500 daily followers vs. how many actually read the average peer-reviewed article?
3. News Junkies: Some of your like-minded peers are freely aggregating and retweeting relevant headlines with links for your perusing efficiency. They can be indefatigable.
4. Kool-Aid Immunity: Did you know your Chief, Chair, VP, lead administrator or Dean wants to control all your communication? Twitter is an easy way to step out of the information bubble and monitor contrary news about that EHR, medical device, performance standards, your institution’s business partners, the competition and more.
5. Efficiency: Twitter trains you to be both brainy and brief. If you can’t fit it into 140 characters or less, you’re wasting your readers’ time.
Continue reading “The Doctor Will Tweet You Now”
Filed Under: THCB
Tagged: Jaan Sidorov, Physicians, Social Media, Twitter
Dec 6, 2012
“Doctor’s office; please hold.”
You’ll never hear that when you call me. Never. You’ll also never get an automated answering system (I’m just referring to office hours, of course. Evenings and weekends the phone goes to Google Voice. More on
that below.) We are also in the middle of a communication revolution. There are now so many other ways patients can contact me other than the telephone, the silly thing is almost becoming obsolete. I took amoment the other day just to go through all the various ways patients contact me.
Still the most reliable fallback. Most synchronous form of communication: both parties willing and able to talk in real time. After hours, Google Voice (free) transcribes messages and texts them to my smart phone. As a rule, patients do not call my cell phone, although I’m not shy about giving out the number. Then again, those who have my cell number usually use it for…
At the moment, it’s just a few patients, but I anticipate more and more of them will partake as time goes on. It doesn’t happen very often, and so far it’s never been inappropriate. Med refill requests and pictures of kids’ rashes have been the mainstay so far. I like it. By it’s very nature, the people choosing to text me understand the limitations of synchronicity, ie, they don’t get bent out of shape if I don’t answer them right away, and they understand that it’s just for relatively minor issues. I also use it to communicate simple quick questions to specialists with all the same mutual understandings (minor issues only; response time unimportant).
Continue reading “Doctorology: Communication. It’s All Good”
Filed Under: Uncategorized
Tagged: Dinosaur MD, Facebook, Patient-Centered Medical Home, private practice, Social Media, Telehealth, Twitter, Wait times
Nov 3, 2012
As both the private and public sector aggressively shift healthcare incentives from a “do more, bill more” to a value and outcome based model, healthcare providers ignore patients role in driving outcomes at their own peril. It is generally understood that patients forget 80-90% of what they are told at the doctor’s office. As incentives no longer reward outcome over activity, this is a disaster financially for health professionals. This will require healthcare leaders to think in a different way. One has to be in denial to think that healthcare reimbursement isn’t entering a deflationary period yet it’s not all doom and gloom for forward-looking healthcare organizations. In fact, it’s a massive opportunity to leapfrog competitors.
As the founder of the Institute for Healthcare Improvement, Dr. Don Berwick stated in an earlier piece:
“The health care encounter as a face-to-face visit is a dinosaur. More exactly, it is a form of relationship of immense and irreplaceable value to a few of the people we seek to help, and these few have their access severely curtailed by the use of visits to meet the needs of many, whose needs could be better met through other kinds of encounters.”
Smart Doctors Recognize Their Inefficiency
If one were to observe a doctor for a month, you would find that doctors have their own FAQ for various conditions, diseases, prescriptions, etc. They are essentially hitting the Replay button hundreds of times a month. Smart doctors are recognizing that there is a better way. The patient and family benefits greatly when the doctor has a mini package of curated content (video, articles, etc.) that is developed for the patients. This is predominantly a manual process today (e.g., writing down web addresses in an appointment or emailing them afterwards).
Continue reading “The New New Medicine”
Filed Under: OP-ED
Tagged: Dave Chase, doctor/ patient relationship, Don Berwick, Salman Khan, Social Media, WebMD
Oct 18, 2012