Palo Alto Weekly

Cover Story - March 4, 2011

The doctor is in ... your social network

Local physicians and hospitals make new personal connections with patients through social media

by Rebecca Wallace

Physicians may not make house calls anymore, but it sure is nice to have your doctor as a Facebook friend.

A few weeks ago, a particular Facebook posting caught the attention of Enoch Choi, an urgent-care doctor at the Palo Alto Medical Foundation. A patient of his had written that she was having trouble sleeping and had charted her sleep patterns and posted the graphic.

Choi immediately typed in a response "I can help you with that" and posted his schedule.

The patient went to see Choi, who gave her medication and behavioral advice to help with her insomnia. Before long, she was back on Facebook, posting a new chart showing how her doctor had helped.

Choi was thrilled.

"A doctor can show compassion online via social media and can make a difference," he told the Weekly.

As technology has evolved, health-care organizations and doctors have been using it more frequently to connect with patients. People are e-mailing their doctors, getting test results on the Internet and keeping track of their medications and appointments online.

Several social-media sites have also expanded well beyond the merely social. Local health-care providers such as Stanford Hospital & Clinics and the Palo Alto Medical Foundation are now regular presences on the social-networking site Facebook. They also frequently post videos on YouTube and write 140-character tweets on the popular Twitter microblogging site.

All of this online activity serves to disseminate information, promote events on health issues and help patients build personal connections with doctors and hospitals.

For example, a hospital staffer might write on Twitter detailing the warning signs of a heart attack, or a doctor might appear in an informational YouTube video about sleep apnea and its treatments. Health-care providers use Facebook to post photos and videos. They spread information via wall postings and comments.

Social media, of course, has its limits. Because of its open, public nature, it doesn't lend itself to preserving medical privacy. It's more suited to, say, promoting a class on food allergies than hosting a talk between a worried patient and an oncologist. In a sensitive case, though, the technology can provide an opening for a human connection that might not have happened otherwise.

"Twitter can be a starting point for a conversation," said Renee Berry, a Palo Alto Medical Foundation patient.

For instance, a patient might write a question about his health care as a public tweet on Twitter. A health-care provider might respond via a direct (private) message, e-mail or phone call, which could then lead to an in-person visit.

That human connection happened with Choi and his insomnia patient. He emphasizes that he doesn't provide medical care or prescriptions online.

"I save that for people coming in to see me," he said.

But in a hectic world where a patient can feel like a number, a simple human interaction with a doctor can be surprisingly valuable.

"There's no rule against expressing concern or expressing empathy," Choi said.

A futuristic, translucent image of a torso appears in a YouTube video, its kidneys glowing a deep orange. All the while, Neiha Arora, a Stanford clinical instructor of medicine in nephrology, speaks, giving an overview of kidney disease: risk factors, symptoms, treatment options.

In other videos on Stanford Hospital & Clinics' YouTube page, doctors seek to demystify other conditions such as Parkinson's Disease and thyroid disorders.

Then there's the video in which cardiologist Michael McConnell recommends his wife's salade nicoise. This one is part of a series that Stanford made for heart month in February. Rather than just giving data about heart disease, the videos profile cardiologists' personal efforts to keep their own hearts healthy.

McConnell talks about his diet and is shown running with a floppy-eared black-and-white dog. Another doctor, Paul J. Wang, plays tennis in his video and admits he could be better about getting more sleep. Dipanjan Banerjee pedals his bike through his video and says he's planning to be more consistent about exercising.

Since its inception, social media has taken flak from people who criticize it as insubstantial and even silly. Detractors say they're tired of people tweeting about what they ate for brunch or posting videos of their kids saying cute things.

But, in the context of health care, that very levity and informal spirit can be valuable, some say. When used appropriately, social media can humanize doctors and other health-care providers, helping patients feel a personal link with them.

"I like how I can contact the hospital through Facebook ... makes them a bit more 'human,'" said Brenda Bonturi-Klassen, who has been a patient at Stanford's cardiovascular clinic.

A heart-attack survivor, Bonturi-Klassen found herself drawn last month to a collection of photos on the hospital's Facebook page. EKG technicians and other employees were pictured in red for Wear Red Day, a campaign to raise awareness of heart disease in women. Bonturi-Klassen clicked the "Like" button and posted a comment thanking the doctors who have treated her.

There's also another reason why Bonturi-Klassen enjoys connecting with Stanford through Facebook. She lives in a remote area, a 45-minute drive east of Hollister. In the winter, the phones often go out, but the Internet keeps working, thanks to satellite service.

"It's so far away that I just feel like it's a little bit closer (with social media)," she said. "I just like the fact that I can have some sort of contact whenever I want."

Besides contributing comments to social media, patients have also played active roles in making videos. At the Palo Alto Medical Foundation, one prostate-cancer patient was a major force behind creating a series of videos of men who had undergone treatment.

"It was men talking to men, guys talking to guys about their experiences" to provide information, said Erin Macartney, the medical foundation's public-affairs and social-media specialist. "You can't always absorb everything right there in the doctor's office."

The men in the videos also provided encouragement to those watching. "Don't be quiet about it," one said about prostate cancer. "Talk to your friends about it, and you might be surprised at how much support they'll give you."

Another said: "I had my radiation first thing in the morning. I was at work by 9:30, 10 o'clock and had absolutely no problems at all."

With several social-media sites available, organizations now have more ways to get videos out there: to patients, families or anyone looking for information. For instance, the medical foundation posted the prostate-cancer videos on YouTube, embedded them in a blog, and then sent out messages about them on Facebook and Twitter.

"Different forms of social media work together, and people all over the world can see this information," Macartney said.

Overall, video "is huge" one of the most important tools used in health-related social media, said Liat Kobza, media-relations coordinator at Stanford Hospital & Clinics.

It's also huge in general. According to a report released last year by the Pew Research Center, 69 percent of adults in the United States have used the Internet to watch or download video.

Besides featuring doctors in videos, Stanford also profiles patients with cystic fibrosis and other conditions.

"We try really hard to put a face with the story," Kobza said. "Why not use social media as a way to tell people: 'You're not alone. We've treated others like you; we can help you.'"

Beyond posting videos, health-care providers also use social media to disseminate information in a host of other ways, including tweeting links to health articles and studies, promoting classes on health topics and offering wellness tips.

"I'm able to share timely health information that is evidence-based," said Choi, one of the most active doctors around on Facebook and Twitter. "It's a helpful way to publicize the availability of flu shots ... and to counter the health fads and dangerous pop-health trends like avoiding vaccinations or (following) fad diets."

Those fads and trends are often spread virally by social media, so in a sense Choi is trying to beat the misinformation at its own game.

Social media is also an efficient way to give updates on news events. Last month, after a suspicious letter forced the evacuation of an office building at the VA Palo Alto Health Care System, VA officials wrote on their Facebook wall to let people know what was going on.

"There was no contamination of any kind found results were negative," director Lisa Freeman wrote on Feb. 16.

A few hours earlier, communications officer Kerri Childress had gone on Facebook to give assurances that "patient care was not affected."

Several readers chimed in with comments including: "Glad all is good," "Glad everybody is ok."

A few used the opportunity to give the VA positive feedback via Facebook, including one man who commented, "The VAPAHC is the best health care facility this 87 year old WWII Purple Heart veteran has ever been privileged to use."

Both Stanford Hospital and the Palo Alto Medical Foundation started using these types of social media a few years ago. Both began with Facebook, then expanded to Twitter and then YouTube.

"We've always had a mission of advocating and partnering with patients," Macartney said, citing the medical foundation's use of electronic health records as an example. Social media, she added, "was a fairly natural extension of communications for us."

Both Macartney and Stanford's Kobza praise social media's swiftness. Patients can get answers to questions quickly, and, assuming someone from a health-care provider is online, answers can come outside regular business hours.

"The beautiful thing about social media is: Anywhere you have a network, you can get on and talk. ... There are very little barriers as far as communicating," Kobza said.

Things can happen very fast online. In January, a man went on Twitter and wrote a public tweet at 9:02 a.m. saying that he was looking for a good general practitioner in the South Bay. A few people responded with recommendations for the Palo Alto Medical Foundation, and by 9:45 a.m. he tweeted: "thanks! PAMF sounds like the win."

Good news and bad travels fast. Recently a woman complained on Twitter about how long she had to wait to get an appointment at the medical foundation.

"She wasn't commenting directly to us, more like complaining to her friends," Macartney said. "So we e-mailed her to address the problem."

Later, the woman went back on Twitter and praised the medical foundation's response, writing, "I'm glad PAMF is mining Twitter."

The foundation's action is part of a larger trend of organizations and businesses "mining" social media. Big brands keep a careful eye out these days for mentions of their names, be they positive or negative. If you post a snarky comment about getting slothful customer service at an airline counter, someone from that airline is probably going to write you back quickly with a public apology.

Macartney said she doesn't mind seeing negative remarks online, as long as she can help address the concerns. If the woman had only spoken about the appointment problem and not tweeted about it, "That would have been a cry in the dark," Macartney said. "We wouldn't have heard about it."

Kobza also calls social media an open forum. Barring something out of line, like a personal threat, negative comments and postings on Stanford's social-media pages don't get taken down, she said.

"Our policy has been to give a voice to whoever wants to have that voice," Kobza said. "If someone has a complaint, it's a perfect opportunity for us to learn about something the hospital is doing that we can make better."

Social media sites also provide a powerful venue for patients to connect with one another.

"I was just told yesterday that I have Moyamoya," a woman posted on Facebook. "I'm not sure what the next steps will be but glad to have found this page. Sounds like the surgery goes well if I have to go that route."

Another woman responded: "Shocking words to hear, aren't they? I remember well our reaction to my daughter's diagnosis almost 6 1/2 years ago." She then went on to give advice about finding a neurosurgeon.

This is the Facebook page for the Stanford Moyamoya Center, filled with postings from patients seeking information, offering virtual hugs and giving updates on their health post-surgery and years later.

Because moyamoya disease, an occlusive cerebrovascular disorder, is uncommon, the page seems to provide a welcome resource and forum for many people posting.

"So glad to have found this page ... now I can keep up with others who I have 'rare things' in common with," one woman wrote.

Teresa Bell-Stephens, a nurse coordinator, runs the Facebook group as part of her role facilitating care and serving as a liaison to patients for years afterward.

"One of the problems with this population is that they come from all over the world. Trying to stay in touch with them becomes a real logistical nightmare. We want to answer questions and find out how they're doing long-term," she said. "This provides an avenue of information for us."

Online, Bell-Stephens answers questions, gently corrects misinformation and posts peer-reviewed published articles and other sources of information on moyamoya. Mostly, though, the Facebook page is a place for patients and former patients to talk about their experiences with moyamoya disease and Stanford Hospital.

"We've never asked a patient to post a testimonial," Bell-Stephens said.

The page is an example of the many ways patients are connecting through social media not only with their doctors and health-care organizations, but with each other.

Some, like the moyamoya patients, talk to each other on their health-care providers' sites. A doctor's video might spark a flurry of comments, with the commenters ending up in conversation with each other. Or a patient might ask a question on Facebook and find several other patients responding.

Other patients take the discussions to their own space. Some create their own Facebook groups or connect by following and commenting on each other's blogs and Tumblr microblogs. Also popular are weekly Twitter chats. You name a health topic, and chances are there's a Twitter community about it.

Typically in Twitter chats, a moderator tweets a discussion topic or question, and other people respond in tweets during an hour-long session. Chat members find each other by including a special hashtag (pound sign followed by a few letters) in each tweet. For example, people chatting about diabetes and social media type the hashtag "#dsma" at the end of their tweets.

"Twitter is part of getting to know someone; you see what they're tweeting about," Palo Alto Medical Foundation patient Berry said. "You start to accumulate a community of people who see you as a resource for quality information."

Social media is also a major tool for Berry in her efforts as an advocate for hospice and palliative care (see sidebar on page XX).

When it comes to being plugged in, not all doctors or health-care organizations are as fluent in social media as Enoch Choi.

The physician has been on Twitter since July 16, 2006, the day after it launched. On any given day, he might tweet a piece of advice ("AED Defibrillators save lives! Users need to check them regularly") or a piece of a doctor's day ("Busy day when u have to borrow iV poles from other departments...").

In the future, Macartney would like to see more Palo Alto Medical Foundation doctors become savvy about social media.

"In the coming year, we plan to offer social-media training for doctors: boot camp," she said.

She's also interested in having the medical foundation host tweet chats, and she'd like to do more tweeting and live streaming video at health conferences and other events, to spread the information far and wide.

At Stanford, Kobza would like to get more connected to Scribd, a social-publishing site that allows users to share documents and writings such as magazine articles and newsletters.

Social media is practical in that it doesn't cost money for organizations to use, although it is good to have a professional videographer, Macartney said. Still, Bell-Stephens cautions that it can become consuming of staff time if overused.

On social media, patients become more used to getting answers right away, and staff members don't have unlimited time. That's why Bell-Stephens has been reluctant to supplement Stanford's moyamoya Facebook page with a Twitter feed.

"The Internet has been phenomenal on one hand. But on the other hand, the demands on health-care providers have substantially increased because of the demands of the patients," she said. "It's a mixed blessing."

Overall, Bell-Stephens sees social media as a good thing because it empowers patients and gives them more opportunities for information. But good or bad, at this point it's perhaps inevitable. Once a type of technology catches on, there's no fighting it.

"We have to use social media because that's the world now," Macartney said. "It isn't a question of yes or no. We just have to jump in."

Arts & Entertainment Editor Rebecca Wallace can be e-mailed at rwallace@paweekly.com.

Comments

Posted by Jane, a resident of University South
on Mar 4, 2011 at 10:45 am

This makes the whole privacy issue a bit more scary.
And people can apply medical advice that doesn't fit their problem.
There are educational benefits, but also misinformation looms a larger problem.


Posted by Facebookie, a resident of College Terrace
on Mar 4, 2011 at 10:51 am

I agree with Jane. Security and privacy on Facebook and other social media web sites is so poor that I do not trust them with any kind of sensitive personal or medical information. Why can't doctors use the same kind of secure web sites as banks and stock brokers?


Posted by Walter_E_Wallis, a resident of Midtown
on Mar 4, 2011 at 10:56 am

Walter_E_Wallis is a registered user.

I have been a participant in both the PAMC and the VA nets. In both, the time saved from the usual receptionist-nurse-doctor communication path is amazing.


Posted by Bo, a resident of Another Palo Alto neighborhood
on Mar 4, 2011 at 11:22 am

This article is very long, and wordy. Given that the topic is multi-media, and computer-based technology, links to Youtube videos, and Twitter feeds, would have conveyed a lot more information that one in this article.

This article is an example of the problems print media has trying to transition "in the cloud", and the world of on-line information distribution.


Posted by William, a resident of another community
on Mar 5, 2011 at 5:23 am

Remote care is more a complement to visits, e.g. for monitoring familiar patients in outlying rural areas. Still, what you cannot observe gets missed.

Why not encourage patients to socialise more frequently (e.g. self-help groups) instead of providing time on Facebook. Don't you have a life too?

All Internet activities should be considered public. If you don't want to announce it over the PA system of your local supermarket keep it off the web.

As far as news updates go: Why do you belong to a professional association?


Posted by Walter_E_Wallis, a resident of Midtown
on Mar 5, 2011 at 6:24 pm

Walter_E_Wallis is a registered user.

The main gain is eliminating the need for both ends to be available at the same time. It eliminate phone tag.


Posted by Student JM, a resident of Palo Alto High School
on Mar 6, 2011 at 10:04 pm

Social media can be a compliment to visiting doctors. It should not replace doctor consultations and visits. A doctor cannot and should not treat you through any social media.

All this social media is getting rid of the face-to-face connections we used to have with each other. And, especially if you have a medical problem, you should physically see a doctor.
Also, there is always talk about all of these foundations, but why do we not talk about the private doctors who are not affiliated with these foundations and have to compete against these large cooperations?

I'm just a student who likes to get all sorts of different angles and perspectives on issues.


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