By now, most of you have probably heard—perhaps via your Facebook feed itself—that for one week in January of 2012, Facebook altered the algorithms it uses to determine which status updates appeared in the News Feed of 689,003 randomly-selected users (about 1 of every 2500 Facebook users). The results of this study—conducted by Adam Kramer of Facebook, Jamie Guillory of the University of California, San Francisco, and Jeffrey Hancock of Cornell—were just published in the Proceedings of the National Academy of Sciences (PNAS).
Although some have defended the study, most have criticized it as unethical, primarily because the closest that these 689,003 users came to giving voluntary, informed consent to participate was when they—and the rest of us—created a Facebook account and thereby agreed to Facebook’s Data Use Policy, which in its current iteration warns users that Facebook “may use the information we receive about you . . . for internal operations, including troubleshooting, data analysis, testing, research and service improvement.”
Some of the discussion has reflected quite a bit of misunderstanding about the applicability of federal research regulations and IRB review to various kinds of actors, about when informed consent is and isn’t required under those regulations, and about what the study itself entailed.
Continue reading “Why We May Be Making Too Much of the Facebook Experiment”
Filed Under: THCB
Tagged: Cornell, Emoticons, Facebook, Human Subjects Research, Internal Review Board, Privacy, Proceedings of the National Academy of Sciences, UCSF
Jul 1, 2014
A Facebook user’s timeline provides both a snapshot of who that user is and a historical record of the user’s activity on Facebook. My Facebook timeline is about me, and fittingly, I control it. It’s also one, single profile. Anyone I allow to view my timeline views my timeline—they don’t each create their own copies of it.
Intuitive, right? So why don’t medical records work that way? There is no unified, single patient record—every doctor I’ve ever visited has his or her own separate copy of my records. And in an age where we can conduct banking transactions on my smartphone, many patients still can’t access or contribute to the medical records their doctors keep for them.
My proposal? Medical records should follow Facebook’s lead.
Cross-industry innovation isn’t new. BMW borrowed from the tech world to create its iDrive
; Fischer Sports reduced the oscillation of its skis by using a technology
created for stringed instruments. So I asked myself: Who has mastered the user-centric storing and sharing platform? The more I thought about it, the more I decided a Facebook timeline
approach could be just what medical records need.
To see what I mean, let’s explore some of Facebook timeline’s key features to see how each could map to features of the ideal medical record.
“About” for Complete, Patient-Informed Medical History
On Facebook: The “about” section is the one that most closely resembles the concept of a user profile. It includes a picture selected by the user and lists information such as gender; relationship status; age, political and religious views; interests and hobbies; favorite quotes, books and movies; and free-form biographical information added by the user.
In medical records: The “about” section would be a snapshot of the patient’s health and background. It should include the patient’s age, gender, smoking status, height, weight, address, phone number, and emergency contact information; the patient’s primary care provider; and insurance information. This section would include a summary list of the patient’s current diagnoses and medications, as well as family history. And importantly, both the doctor and the patient would be able to add details.
“Privacy Settings” and “Permissions” for Controlled Sharing
On Facebook: Privacy settings allow users to control who can see the information they post or that is posted about them. For example, in my general privacy settings I can choose to make my photos visible only to the people I’ve accepted as “friends.” However, if I post a photo I want the entire world to see, I can change the default setting for that photo to be visible publicly instead.
Facebook also allows users to grant “permissions” for outside applications to access their profiles. For example, let’s say I use TripAdvisor to read travel reviews. TripAdvisor lets me sign in to its site using my Facebook account, rather than creating a separate TripAdvisor account. But, to do this I must grant TripAdvisor “permission” to access my Facebook account.
In medical records: Patients could use “privacy settings” to control whether all or part of their information can be seen by a family member or caregiver. For
example, if my aging mother wanted to give me access to her “events” (upcoming doctor’s appointments), she could do so. If my college-aged son who is still on my health plan wanted to give me access to his knee X-rays, he could.
Continue reading “Actually, We’d Probably All Be Better Off With Our Health Records on Facebook”
Filed Under: Tech, THCB
Tagged: Electronic Health Records, Facebook, Privacy, Proposals guaranteed to lead to mass hysteria
Jan 6, 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
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
At some point, this gets to be ridiculous. Online, I can buy any item from anywhere at any price, pay any bill, watch any movie, listen to any song, order dinner, schedule car repair or read about any subject on Wikipedia. I can determine the weather in Rio, sport scores of Barcelona, Parisian traffic or by GPS the location of my kids, just down the block. However, I absolutely cannot learn anything at all of the health history of the flesh and blood cancer patient sitting right in front of me.
Today, I am seeing long-term patient, Thomas R. Father of three and a really nice guy, Tom is a medical challenge.
He is immunocompromised and status post 20 years of complex chemotherapy, radiotherapy, a bone marrow transplant and several bizarre complications, we barely understand. In the last two months, since his last visit with me, he has seen an internist, a dermatologist, a podiatrist, a neurologist, a dentist and an infectious disease specialist. These doctors ordered X-rays, lab tests, blood cultures, an EMG, a skin biopsy and several new medicines.
These are confusing tests resulting in confusing diagnoses with confusing therapy in a confusing patient.
What records do I have of all this new complexity? Nada. None. Moreover, based on our files, all these other physicians have none of ours.
Continue reading “Can Facebook Save Us?”
Filed Under: THCB
Tagged: Care coordination, Facebook, James Salwitz, Medical Records, Silo Design, Stone Age, Universal Electronic Medical Record
Feb 6, 2013
“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
Who am I? Why am I here? Does it really matter anyway? Bestselling business author and corporate historian Jim Collins(“From Good to Great”, “Built to Last: Successful Habits of Visionary Companies ”) has made a career by asking executives unused to such introspective philosophical questions to stop and think about the fundamental assumptions at work in their businesses. Collins has found that the most successful companies (think Google, Apple, Microsoft, probably notFacebook) learn to ask the key questions that keep them focused on what they’re supposed to be doing and teach them to avoid making the mistakes that cause lesser, more mortal companies to trip up over their own feet. Not long ago THCB was on hand to catch Collins and bestselling author (“Getting Things Done”) David Allen speak at an exclusive invitation-only healthcare forum hosted by the Denver-based Breakaway group. In this interview, Breakaway group CEO Charles Fred talks with THCB founder Matthew Holt about his organization’s innovative and very successful approach to teaching healthcare professionals to work with new technologies.
Filed Under: THCB
Tagged: Apple, Breakaway Group, Charles Fred, Facebook, Google, Jim Collins, Microsoft, Social Media
Aug 7, 2012
Because nearly one billion users produce a lot of data, Facebook has had a hand in publishing more than 30 research papers since 2009, including research (.pdf) that may link social-networking activity and loneliness.
But outside researchers have been unable to validate those studies because Facebook refused to release the underlying raw data, citing the need to protect users’ privacy. Now Facebook is considering changes to its policy. Nature News reports:
Facebook is now exploring a plan that could allow external researchers to check its work in future by inspecting the data sets and methods used to produce a particular study. A paper currently submitted to a journal could prove to be a test case, after the journal said that allowing third-party academics the opportunity to verify the findings was a condition of publication.
Continue reading “Facebook May Grant Researchers Access to Study Data”
Filed Under: Uncategorized
Tagged: Data, Facebook, Privacy, Social Media
Jul 27, 2012
There were two interesting developments in the field of social networks for healthcare practitioners last week. The first was the publication of a paper in JAMA “Variation in Patient-Sharing Networks of Physicians Across the United States”. The second was the sale of Sermo Physician Network to WorldOne for an undisclosed price. Sermo had raised $40+m in venture capital prior to sale, making a bet that social networking for physicians could drive value to pharmaceutical and financial firms based on disclosing interactions between members of the network.
If physician behavior and prescribing activity are key to your healthcare business, I think it is important to understand the relationship and differences between these two events.
Sermo bet hard on the Facebook model – physicians would interact on social networks, share knowledge and insight, and third parties could benefit from getting access to those interactions concerning their products or services. Sermo had also begun expanding its revenue model by providing paid content and sponsored education programs to network members, trying to capture “digital” dollars from life science companies. Pharma companies are desperately trying to gain advantage through digital advertising campaigns to influence physician prescribing behaviors, and multi-channel marketing efforts including the development of web sites for branded medications.
Continue reading “Physicians Aren’t (Feeling Very) Social”
Filed Under: Health 2.0
Tagged: Big Data, Facebook, Health 2.0, Jim Golden, patient referrals, physician behavior, Sermo, Social Media
Jul 26, 2012