Emergency Response to the Boston Marathon Bombings: Looking to Social Media for Information, Resources, and Connections

Boston is my second home.  I lived there for 6 years.  I went to school there.  I made some of the best friends of my life there.  I got married there.  I spent many Marathon Mondays along the race route cheering for friends, colleagues, and absolute strangers.  As many have reported on the news, Marathon Monday is the best day of the year in Boston and you have to experience it to truly understand its excitement and feeling of community.

I am absolutely heartbroken about yesterday's bombing at the Marathon.  In tears, I sat and watched the news alone in my home.  However, I did not feel alone.  As news broke, I quickly connected with Boston friends via text and social media to make sure they were okay.  Many had been watching at various points along the route.  I also connected with public health colleagues to follow the news and to catalog resources and information being deployed to my friends in Boston and also to those of us watching from home.

As with Hurricane Sandy last November, I think it is important to document all the ways that social media is being used to disseminate information and support public health and emergency management.  Here are the key themes that I saw:

Immediate Public Safety Concerns and Instructions

With the #tweetfromthebeat hashtag, Boston Police communicated regularly with twitter followers, instructing marathon spectators to clear the area around the finish line and refrain from congregating in large crowds.

Investigation

To assist with the investigation, Boston Police and FBI are asking all spectators and eyewitnesses to submit video and photos taken at the finish line.  This message has been widely disseminated via social media.

Reconnecting Runners, Spectators, and Resources

As we have seen with emergency management of natural disasters, social media and technology play a critical role in reconnecting victims with their families and friends.  For example, the following resources were quickly deployed on social media:

• American Red Cross: Safe and Well
• Google: Person Finder
• Google document: Local Boston residents offering shelter to displaced runners/friends/families

Resources for Journalists

Along with tweets from respected news organizations and reporters reminding each other not to speculate early on in the investigation, there were also formal resources circulated regarding how to effectively cover such a story.  For example, the Dart Center for Journalism & Trauma offers comprehensive resources on the reporting of disasters and terrorist attacks.  A resource focusing specifically on the Boston Marathon bombings was tweeted out:

Mental Health & Support Resources

Many public health professionals linked to resources to support those in distress following the bombings and/or those who needed help communicating about the events (e.g., discussing it with children).

HHS Secretary Sebelius tweeted about federal disaster resources:

Philadelphia (like many other cities) tweeted about local disaster resources:

Massachusetts General Hospital and other organizations tweeted out tips for discussing the Boston Marathon bombings with children:

As I discussed in my coverage of Sandy, the power of social media also brings challenges to public health and emergency management.  We have seen some early postings about the lessons learned from this event- which does include a discussion of concerns such as rumors spreading rapidly on social media.  For example, it was first reported that cell coverage in Boston was being turned off so that additional bombs could not be detonated remotely.  We later learned that information was not true.  The cell service was slow or not operational due to the extreme overload of users trying to communicate simultaneously.  There was also a lot of concern about very disturbing images of the crime scene and victims being shared on social media.

So there is much to learn about the use of social media for public health and emergency management through close examination of this event and others.  In any case, it is very clear that social media needs to be a part of every organization's disaster and response plan. 

Tell me what you think:

• What was your impression of the use of social media by federal/state/local organizations yesterday after the Boston Marathon bombings?  
• Can you share additional examples of how it was used effectively?  
• What did you see that concerned you?

Social Media: Providing Connections, Voices, Adventures to Many with Chronic Illness

I am in awe of social media.  

I am in awe of it in my professional life.  I have connected with colleagues all over the world who share my passion for public health, health communication, blogging, pop culture- you name it.

I am also in awe of it in my personal life.  As someone who lives with a chronic illness, I have connected with others who suffer from similar symptoms, offer support, advocate for patient rights, and recommend creative solutions to balancing work and life.

In the past month, I have been struck by several examples of how social media is transforming the lives of people with chronic illness.  Without the networks available within social media, many of these people may have been very isolated due to their conditions.

On March 11, 2013 NBC Nightly News with Brian Williams ran a story about Virtual Photo Walks.  The project's tagline is "Walk the walk for those who can't".  Using the social media platform Google+, Virtual Photo Walks enables people to become "interactive citizens" again.  They connect with smart phone enabled photographers to "travel" and see places and people that they used to see...or always wished that they could.  The news story profiled a woman with Lupus who could not travel due to her serious health condition.  She always wanted to go to Italy and with Google+ she did.  We watched World War II veterans no longer able to travel, "visit" the USS Arizona Memorial through the collaboration of photographers and Google +.  It was incredible to watch.    

On April 5, 2013 CNN Tech ran a story called "On Twitter, Roger Ebert Found a New Voice".  The story describes how Roger became an avid twitter user in 2010, years after cancer had silenced his voice.  He wrote, 

"Twitter for me performs the function of a running conversation. For someone who cannot speak, it allows a way to unload my zingers and one-liners".

As someone growing up in the 80's, I regularly watched "Siskel and Ebert and the Movies".  Keeping up with Roger through twitter and his blog "Roger Ebert's Journal" in recent years has been a seamless transition.  I felt like the show never ended.  I kept up with his running commentary and of course- his movie reviews.

Sustaining your presence in the world is important with a chronic illness.  I felt that point strongly when reading his final blog post, "A Leave of Presence".  

"What in the world is a leave of presence?  It means I am not going away".  

Please Share:

• What creative ways do you see social media being used to support those with chronic (or acute) illnesses?
• Why do you think these communication channels are so effective in "sustaining your presence"?

Using Twitter to Track Disease: Weighing the Advantages and Challenges

A few weeks ago I participated in a fantastic twitter chat on the use of social media for public health.  During the event, our moderators posed the following question: "Are there any other diseases (besides the flu) that we could track on social media?"

The question generated a very lively discussion that I was inspired to revisit on Storify this morning after reading the Washington Post's article, "Twitter becomes a tool for tracking flu epidemics and other public health issues." 

The WP article highlights several advantages and challenges of monitoring public health diseases and/or conditions on twitter.  My twitter chat colleagues brought up many other important issues for us to consider, so I'm including these expanded lists:

Advantages:

• Offers real time data on health or behavior (Government data can often take weeks or months to be released)
• There is so much available data! 
• It could capture cases that would not otherwise be formally documented at a physician's office or hospital.
• It has proved helpful in tracking time sensitive disease outbreaks (e.g., Novovirus).  *Check out this article about how twitter was used to track Norovirus activity during a journalism conference.

Challenges:

• Accuracy and case definition (i.e., does a twitter user really have the flu or just a bad cold?)
• Tracking specific words like "sick" or "flu" can bring up a lot of content that is unrelated to the twitter user being ill themselves (e.g., "I'm so sick of this terrible weather").  *Check out how Johns Hopkins researchers are working to address this problem by better screening tweets.
• We must differentiate between tracking symptoms vs. tracking cases- they are not the same.
• Our search strategies should include various terms or slang that are used to describe the disease or behavior of interest.
• Caution: media coverage of certain illnesses can cause a spike in key words on twitter without a rise in actual cases.
• What are the privacy concerns?
• Twitter might not thoroughly capture diseases or conditions that carry stigma (e.g., mental illness) because users may be hesitant to discuss them in a public forum.
• Results could be skewed by populations who are over or under represented on twitter.
• Do we need to train "trackers" to intervene? E.g., what if they are monitoring dangerous tweets/behaviors like suicidal ideation and attempts?

While the challenges list is quite long, I hope we are not discouraged!  I think twitter is an enormous resource for public health professionals.  We just need to be thoughtful and thorough regarding how to use twitter effectively.

More Resources:

The Washington Post article and related stories shared great links to more information about research in this area:

• YouTube video on University of Rochester efforts to track influenza on twitter.  It also describes their related app: Germ Tracker (warning: it may have you hopping off your regular morning bus). 
• Johns Hopkins University article: "You Are What You Tweet: Analyzing Twitter for Public Health".
• Brigham Young University article: "'Right Time, Right Place' Health Communication on Twitter: Value and Accuracy of Location Information".
• A great article that highlights what we can learn from Google Flu (since their predictions were off this year)- emphasizes the importance of "re-calibrating" your models or algorithms each year.

What Do You Think?

• What other advantages and/or challenges should we add to the list?
• What other resources can you share?

  

Downton Abbey: A Mountain of Viewer Tears Leads to an Incredible Online Discussion about Maternal Health

Warning: if the January 27, 2013 episode of Downton is still on your DVR- this post contains spoilers!

From the looks of twitter this week, I am not the only person who was devastated by the loss of Lady Sybil on Downton Abbey.  She died of Eclampsia shortly after giving birth to her daughter.  In my house, there was complete silence while we watched Sybil convulsing and struggling to breathe.  After she died, our horror and sadness quickly turned to anger.  There were two doctors in the room (one of whom made the correct diagnosis)- how could this happen?

As I contemplated this question, I was fascinated to see how this story line impacted the public health messaging that started appearing on twitter.  I recognized a few trends:

Making the connection to current women's health issues and debates

There has been much concern about men making decisions about women's healthcare- for example, the comments in 2012 about the definition of rape and the ongoing abortion debate.  Since Sybil's death was largely the result of poor decisions about her health (made by her father and the fancy male doctor consulting on her case), I saw the following post on this topic over and over again:

 

Identifying a Teachable Moment:  Preeclampsia and Eclampsia Specifically

Like many organizations, the American Public Health Association (APHA) followed up on Monday with this message:

Identifying a Teachable Moment:  Maternal Mortality and Maternal Health Broadly  

I saw many links to organizations such as Every Mother Counts, which focuses on global maternal health advocacy:

In addition to the discussion on social media, many news outlets and foundations also took the opportunity to post information on their websites about the condition that killed Sybil.  For example, ABCNews wrote, "Eclampsia Death in 'Downton Abbey' Highlights Pregnancy's No. 1 Killer".

I would love to see some evaluation data to follow this teachable moment.  Some questions that I have:

• How many people searched for Preeclampsia and Eclampsia following the episode?  (As a side note, this episode aired months ago in the UK- was there a similar searching pattern?)
• How many physicians/midwives/clinicians received inquiries from patients following the episode?
• Beyond knowledge- did this episode change any clinician behaviors?  Did they go back and review a suspicious case after seeing a reminder of the severity of this condition?  Did they perform a more comprehensive screening?

What do you think?

What other evaluation questions should we be asking?

What other trends did you see in the discussion on social media (or in person) following this episode?

Facebook Revisited: Does the Platform Help or Hurt Users (or Both)?

The benefits and challenges of social media for public health are a frequent topic on Pop Health.  For example, I've explored the influence of these platforms on emergency response, increasing the number of organ donors, and health activism.  However, one of the debates that I hear the most among public health colleagues relates to Facebook.

Does it isolate users?  Does it connect users?  Does it do both?

Earlier this year, my colleague Elana Premack Sandler explored this debate as it relates to loneliness.  Inspired by a feature in the Atlantic Magazine, Elana asks key questions like, "Is Facebook part of the separating or part of the congregating?"  She also mentions concerns about how Facebook (and other social media platforms) affect our social skills and therefore our friendships.

I thought of Elana's writing as I read a new post on the Atlantic website today, "Are Your Facebook Friends Stressing You Out?  (Yes.)".  This post highlights a new report out from the University of Edinburgh Business School.  The report caught my eye because it identified a very specific cause of stress for Facebook users.  The more groups of "friends" a user had (e.g., family, real life friends, co-workers, etc), the more anxiety they had because there was a greater chance of offending someone with their posts.  The report stated that the greatest anxiety came from adding parents or employers as Facebook "friends".  As Megan Garber writes so eloquently in her Atlantic post, the stress comes from Facebook forcing users to "conduct our digital lives with singular identities".  The way we speak or act around family or friends or co-workers must jive on Facebook, or we run the risk of offending someone.  I'm sure many of us saw this conflict a few weeks ago when political and election posts ran rampant on Facebook!

The anxiety described above is interesting, because ideally what we would hope is that Facebook provides a source of social support to users.  Social support occurs when one is cared for by others (via emotional, tangible, or informational support).  The presence or absence of social support is a factor related to public health issues, such as suicide.    

So after reading through the various posts/articles, what do I think about my opening questions about Facebook?

Does it isolate users?  Does it connect users?  Does it do both?

I think it does both.  I have seen it do both.  For example:

Isolation:  I have spoken to friends and colleagues who feel terrible about themselves or their lives after scrolling through their Facebook news feed.  A friend with chronic illness feels isolated hearing about the latest vacation or new job taken by her "friends".  A friend suffering from infertility can't bear one more picture of a "friend" and their newborn.  I think much of this results from the "whitewash" that many of us put on Facebook.  We often paint a picture for our Facebook friends, full of engagements and babies and fun events.  

Connection:  Earlier this year I watched a suicide intervention unfold on Facebook via the comment section under a post.  A friend of a friend posted a suicidal message on their Facebook wall.  Within minutes, "friends" reached out in the comments.  However, not only did they "speak" to the person, but they interacted with each other and followed up in real life.  One comment read, "Did someone go to his house?"  The next comment read, "I went to his house and I called his parents".  After he was taken to the hospital, a comment was posted to inform all the friends that he was safe.  As a public health practitioner that worked in suicide prevention for years, I was amazed with what I saw. 

So what can we do to reduce the isolation/anxiety and increase the connection?  You can certainly start by exerting your control over your Facebook account.  For example:

• Create a policy about "groups of friends" that you accept into your circle.  I know lots of people that do not accept requests from co-workers or parents.  They make it clear to the individual that it is nothing personal, they just have minimal friends with which they share intimate information.
• Use the privacy settings!  You can control who can see your posts.
• Find and use the unfriend button!  I have done this frequently.  If someone posts messages that are offensive or disrespectful regarding something that I've posted- I get rid of them quickly.
• Take a break from Facebook.  If you realize that Facebook is making you feel bad about yourself, take a break or disable your account.  Use that time to connect with your in real life (IRL) friends or family.

Tell me what you think!  

• Does Facebook isolate and stress us?  
• Does Facebook connect us?
• What other strategies can help to reduce the isolation and increase the connection on Facebook or other social media platforms?

A Superstorm of Social Media

Over the past week, there has been widespread discussion regarding the broad reach and value of social media during Superstorm Sandy.  Jim Garrow wrote about the emergency management field's adoption of social media and the powerful influx of images received through those channels.  In the New York Times, Brian Stelter and Jennifer Preston discussed how public officials use social media during a crisis.  Technology bloggers have posted analyses regarding the increase in internet use during the storm.

So what can Pop Health add?  I wanted to break down "social media use" even further.  I wanted to discuss the specific ways in which I saw it being used.  And although I think we all have a primarily positive view of social media's contribution during an emergency, I think it is also important to highlight some of the challenges that may appear with these communication channels.

Let's start with the good stuff!  During and after the storm, I saw social media being used for:

Individual-Level Advocacy

Affected residents used social media to communicate directly with local and state officials to report property damage, ask questions, and request direct assistance.  For example:

• As the screen shot above shows, Cory Booker (the Mayor of Newark, NJ) has been corresponding directly with his residents on twitter and following up with the necessary supplies or services.

• Locally in Philadelphia, I've seen the same thing with Mayor Michael Nutter.  He has been messaging with citizens about downed trees and power, in order to direct assistance to areas that need it the most.

Community-Level Advocacy

One thing that amazed me during Sandy was the power of social media in terms of advocacy on behalf of whole communities (whether they be particular neighborhoods or cities).

• When Margate, Longport, and Brigantine, NJ were reopened after the storm, there was immediate and overwhelming protest to the toll on the Margate bridge.  Residents felt that it was extremely insensitive (and selfish) for the bridge owners to charge storm refugees to get back onto the island (especially when they had no choice but to take that particular route).  Through protests on twitter and Facebook, the bridge owners were persuaded to reverse their decision to charge.

• The decision to cancel the NYC marathon was a difficult- and some would say delayed- decision.  While objections to the marathon (and the resources it would require) were widespread, much of the discussion happened on social media.  These channels were used to post online petitions and plan protests.  As you know, the race was finally canceled two days before the start.

Donations

Social media has been a key place to ask for donations to help the victims of Sandy.  Some strategies have been more traditional (e.g., asking for donations for the Red Cross).  Others have been quite creative!

• For example, runners in the canceled NYC marathon could follow a link posted on twitter in order to donate their hotel room to someone displaced by the storm.

The power of social media lies in its reach and ability to deliver information in real time.  On the flip side, the concern is that false information can spread quickly as well.  Here are a few examples that happened during Sandy:

• If you were using social media when the storm hit, you may remember seeing many unbelievable images.  One that I saw over and over was a group of soldiers guarding the Tomb of the Unknown Soldier.  However, we later learned that this image was taken back in September.  Mashable pulled together a list of "7 Fake Hurricane Sandy Photos You're Sharing on Social Media".  

• A congressional campaign manager in NYC resigned after sending out false information on twitter.  One of the rumors he started was that the trading floor of the New York Stock Exchange had 3 feet of flood water.  Many of his tweets are shown here.

As you can imagine, there is great danger to the public's health if incorrect information is widely shared.  Residents may panic and evacuate from a location that is actually safe.  Emergency management and public officials may be distracted from the work at hand, because they have to deal with clarifying a rampant and destructive rumor.

I think we can all agree that the value of social media in a crisis far outweighs the potential challenges.  However, this is an important conversation to keep having and I'd like to hear from you:

• In addition to the examples above, how did you see social media used during Sandy?
• How can we be even more innovative?  In what ways could we use social media during a crisis that we haven't yet tried?
• How can we prevent false information from spreading during a crisis?

So Who Else Caught the Brain Surgery on Twitter Today?

If you were on twitter today, you may have seen the hashtag #MHbrain.  That stood for Memorial Hermann-Texas Medical Center in Houston (@houstonhospital).  Today they live-tweeted a brain surgery which removed a cavernous angioma tumor from a 21-year-old female patient.

According to the hospital's press release, the goal of the "twittercast" was to (1) educate the public about brain tumors and (2) demystify brain surgery by giving a look inside an operating room.  The surgeon, Dr. Dong Kim, added "Someone may have a loved one who is considering a similar procedure and perhaps they can glean some information from this twittercast that may help them make a decision about whether surgery is the right choice for them."

In authentic social media style, the hospital did not just send out information and images. They also had another neurosurgeon, Dr. Scott Shepard, serve as an online moderator who could respond to questions and comments from twitter followers in real time.

While there was much excitement over this event today, it is not the first time we have heard about surgeons tweeting from the operating room.  Back in 2009, CNN picked up a story about surgeons at Henry Ford Hospital in Michigan tweeting the removal of a cancerous tumor from the kidney of a male patient.  Just last February, Memorial Hermann was in the news for the first live tweeted open heart surgery.

A few thoughts on this trend:

How is Memorial Hermann evaluating their twittercast efforts?  

• Was this a huge marketing event or do they actually have health education goals?
• Are they simply looking at the numbers?  For example, the number of twitter followers (up to 13,400 from 5,100 in the past 3 months).  Or the number of visitors to Storify, a site which archives both the heart and brain surgeries.
• Are the demographics of twitter users reflective of their target audience?
• I would hope that they are thinking about how to evaluate the goals they explicitly laid out in their press release.  How will they show that a twittercast can increase knowledge about brain tumors?  How will they show that the public or potential patients have less anxiety about the procedure or choose it more often?  As always, it is important to state goals (for any public health activity) that are measurable.  

How is social media a benefit/challenge for physicians?

• I read an interesting blog post recently called, "Why social media may not be worth it for doctors."  The author was concerned about already burned-out doctors trying to learn and make time for ever-changing technology...with no guarantee that the technology will give them "return on investment".  Do the challenges outweigh the benefits?
• If physicians view themselves as "educators", how much value could twitter bring?

Are there patient safety or confidentiality issues that should be considered?

• Although the patient's name was protected and she gave permission for the twittercast, is it possible that any confidential information could be accidentally shared during the event?
• Although safeguards are in place, errors do happen in the operating room and throughout the hospital.  With the additional staff/equipment (and possible distraction?) in the operating room to conduct the twittercast, could we face an increased risk of error?

What do you think?

Facebook Adds Organ Donation To Timeline: Should We "Like" It?

Typically, I post on Wednesdays.  However, with so much chatter about Facebook's announcement, this felt more timely.
Starting today, you can add your organ donation status to your Facebook timeline using the "share life" tool.  If you are already registered, you can share your story about where and why you decided to become an organ donor.  If you are interested in registering, you can follow links to official donor registries.

ABC has been a primary news source for this announcement, interviewing Facebook CEO Mark Zuckerberg, demonstrating how to use the "share life" tool, and discussing myths and facts about organ donation.

Scanning Facebook and Twitter today (especially among my public health colleagues), the response seems to be overwhelmingly positive.  From my perspective, the Facebook tool has the potential to be effective (i.e., increasing the number of registered donors) because it focuses on action.  The tool is not for education.  The tool actually links to registries so that you can sign up.  The tool aims to increase the visibility of already registered donors, which in turn will influence others to sign up.  The tool aims to decrease the stigma and secrecy of talking about end of life decisions by putting it right up there next to your birth date and relationship status.  This may also influence others to sign up.  In previous posts, I have written about public health campaigns that use social media in order to reduce the stigma around an "undesirable" topic (e.g., STD testing).

Although I am 100% supportive of the mission of increasing organ donors and am familiar with the dire need for donations (e.g., 18 people will die each day waiting for an organ), I have a few reservations about "share life":

In today's New York Times coverage of the Facebook announcement, I read a sentence that concerned me (I added the underlining):

"The company announced a plan on Tuesday morning to encourage everyone on Facebook to start advertising their donor status on their pages, along with their birth dates and schools — a move that it hopes will create peer pressure to nudge more people to add their names to the rolls of registered organ donors".

I consider declaration as an organ donor to be a medical decision.  In public health and medicine, we strive for patients and the public to make such decisions from a position that is informed and lacks pressure from physicians or family or friends.  Therefore, I have reservations about people signing up without educating themselves first and/or because they feel pressure on Facebook.  Just a few weeks ago, I posted about "hashtag activism" and how easy it has become to get involved in causes via social media.  Are we as thoughtful when we participate in causes on Facebook as when we participate in real life?

My other ongoing concern is regarding the proper security and use of personal information that is gathered by Facebook.  Will your organ donation status result in particular advertisements being sent your way?  I remember updating my Facebook status to "engaged" 4 years ago and being overwhelmed by the wedding planning advertisements on my page.  There is increasing public outcry regarding privacy settings and the personal information you enter being used for Facebook to attract advertisers and other business opportunities. 

Again, I am 100% supportive of the organ donation mission.  I think the reach of Facebook offers tremendous public health opportunities (including the possible elimination of long wait time for organs).  While that is an attractive outcome, we must always remember to focus on the ethics of the process as well.

What do you think?

•  Facebook has become directly involved with several public health issues (e.g., suicide, bullying, organ donation).  Are their strategies effective?  Why or why not? 
• Do you foresee any unintended consequences from the organ donation tool?
• Will you include your organ donation status on your Facebook timeline?  Why or why not?