#RoyalBaby Offers Public Health A Unique Opportunity To Advocate For Maternal and Child Health

As Catherine, Duchess of Cambridge, went into labor early yesterday morning, public health organizations and advocates took advantage of the opportunity to talk about maternal and child health.  Since much of the world was following the #RoyalBaby story, it made sense to make the connection to public health work.

Here are some of my favorite tweets and topics:

VACCINATIONS

 

 NEWBORN SCREENING

BREASTFEEDING

Andy's tweet was in response to this image from Oreo:

PRENATAL SMOKING

SUPPORT FOR NEW PARENTS

As I've noted in related posts, I hope these organizations are evaluating their communication strategies!

• Have they seen an increase in traffic to their websites and resources?
• Have they engaged a new audience by aligning with the #RoyalBaby news?
• What organizational resources are needed to develop communication plans that coordinate with timely global and pop culture news?
• What lessons learned can be applied to future communication efforts? 

What do you think?

• Are these types of communication strategies effective in reaching a broader audience?
• Are there other relevant public health tweets that you felt were creative and engaging?  Please share!!

Pinning Public Health: A Spotlight on Hamilton County Public Health

On June 18, 2013 "How and Why Should We Pin Public Health?" became one of Pop Health's most popular blog posts.  So you can imagine my excitement to share a follow-up piece that spotlights the Pinterest work at the Hamilton County, Ohio Public Health Department! 

Today's post is written by Christy Cauley, M.Ed., an Electronic Communications Specialist, who is responsible for the department's social media strategy.  Hamilton County Public Health (HamCoHealth) was established in 1919 to serve more than 460,000 Hamilton County residents living outside the cities of Cincinnati, Norwood, Sharonville and Springdale. With a staff of more than 80, including sanitarians, plumbers, health educators, nurses and epidemiologists, Hamilton County Public Health strives to prevent disease and injury, promote wellness, and protect people from environmental hazards.  

I am very fortunate to work for a local public health department that understands the value of a strong social media presence. Hamilton County Public Health  has a strong presence on Facebook, Twitter and YouTube and now we’re expanding our presence on Google+ and Pinterest. The latter’s image-centered format poses many challenges to public health entities. After all, who wants to look at pictures of syphilis?

That simply means we have to get creative. Rather than pinning a picture of syphilis, I’ll pin a picture of a cute stuffed amoeba that represents syphilis. The photo still links to an article that lets everyone know there is a syphilis epidemic in Cincinnati and what they can do about it, but they are spared the sometimes graphic images that are associated with public health.

We also have to consider our audience. Our Pinterest audience is quite different from other social media outlets. For starters, there is a much stronger female presence on Pinterest. In fact, the vast majority of our followers are women. That affects our pins and our boards – we have a Women’s Health board for example. Our pins have much more to do with family health and safety than our other social media pages. We tend to focus on health, nutrition and fitness, things that matter more to women than men. We have many pins on Pinterest that do not make it to our Facebook or Google+ pages because the audience just isn’t right for it.

Growing our audience has been challenging on Pinterest. Few people outside the profession are really interested in public health until there is a reason to be interested – like an outbreak of West Nile Virus, for example. We take the usual steps – following others’ boards, liking, commenting and repinning when possible. But what we really want is interaction with our stakeholders on our own boards. We want to get our messages out and know that our audience is hearing them.

To help with that goal, we have “public” boards where we allow others to post to our boards (and we have been invited to do the same). This creates boards with people of similar interests who can share pins more easily. We are careful to include a disclaimer on these boards however, and we do monitor outside pins. Our public health and safety boards can only be pinned on by us, but our recipe and fitness boards are open for our followers to share their favorite pins and they do. We pin to a public board called Health Communication & Social Media from Raed Mansour, where social media and communications professionals can share their ideas. Before, our only interaction with these professionals was on Twitter.

Interestingly enough, the place where we receive the most interaction on Pinterest is one of the public boards we were invited to pin to – Cat World, a board by Joyce Egoodman. Yep, you read that right, Cat World. What does that have to do with public health, you ask? Not a lot, although we can connect pets to our emergency preparedness and heat safety topics quite easily. But, people who love cats are our stakeholders. Public health affects everyone, even our pets. And who doesn’t like cute cat pictures?

How it works is we will find the cutest cat picture on our following boards in the morning and repin it to Cat World with a message about public health or safety. That pin then gets repinned by anyone who likes the picture – not necessarily the message. In turn, our message gets disseminated all over Pinterest and it only took a few seconds of our time. Our Cat World pins get commented on, liked and repinned much more often than our other pins because that board has a wider audience (for now).

One of the Social Media for Public Health (#SM4PH) Twitter chat participants (@AmandaMPH) mentioned that there is a LOT of unhealthy dieting information on Pinterest and we have also found that to be the case. That’s one of the reasons it’s so important for health departments to have a presence on Pinterest, so we can put out accurate information that people can trust.

We’ve found that the image is as important as the message. As a result, we keep our messages short and sweet and we keep our pictures creative. For example, did you know Ryan Gosling is the poster boy for public health? There are hundreds, maybe even thousands of Ryan Gosling memes and many of them are public health centered. We try to utilize them on “Fun Friday” as much as possible.

Another small thing we do is change our board covers often. When new stakeholders visit our page, we want them to see a captivating image that makes them want to view the board, but we also want to make sure that the pin in question is toward the top of the board. I can’t tell you how many pages I’ve visited where I wanted to repin the board cover image, but once I clicked the board, it went on forever and the cover photo was nowhere to be found. We want our stakeholders to find things easily. It’s a small thing, but don’t underestimate its importance to the aesthetics of your page. And don’t neglect the description and category areas either.

We have also taken advantage of @PinGraphy, which allows us to schedule pins for certain times and days. When interaction matters so much and we do not have someone on social media on the weekends, this tool is invaluable. (We use HootSuite for scheduling our other social media sites.)

Getting our feet wet in Pinterest has been challenging. We have made a lot of changes to our boards since we started in response to feedback from users. We’re still learning, but we hope that Pinterest will be a valuable tool in spreading our messages about public health and safety issues in Hamilton County, Ohio and throughout the world.

Instagram It! Using Instagram for Public Health

This week's guest post for Pop Health was written by Alyssa Anderson.  She is a Community Health Education graduate student focusing on health promotion and work site wellness. Originally, she thought employee wellness was her niche but soon discovered that social media took 1st place in her heart. Finding ways to weave health promotion, marketing, and communication with social media is her main focus these days. She currently lives on Pensacola Beach, FL, enjoying her slice of paradise on the Gulf Coast. 

Follow Alyssa on Twitter, Instagram, and pin with her here!

There is certainly a wide range of social media channels discussed on Pop Health. However, as I was browsing and chatting with Leah about this guest post, we discovered that Instagram had not yet been covered. I jumped at the opportunity to highlight some public health organizations using this channel. And with the revealing of Instagram Video, the timing just seemed perfect.

A quick search of Instagram revealed that a number of public health organizations are actively using this photo-sharing application.

• Chicago Department of Public Health (By the way, congratulations to the Blackhawks!)
• American Public Health Association
• Austin, TX Department of Health and Human Services (what they did is really great, more to come!)
• The Red Pump Project (Hey, National HIV Testing Day is June 27!)
• American Cancer Society
• The list continues…

While there are quite a few public health organizations on Instagram, their usage differs. For example, Chicago Department of Public Health is sharing mostly promotional messages, such as

It may seem simple and a no-brainer, but these posts have received little engagement. A "like" here, a comment there, but no real involvement from other followers.  In fact, Chicago Department of Public Health only has 195 followers. In a city of 2.7 million, their Instagram is having very little reach.

On the other hand, the Red Pump Project has 905 followers. They promote awareness and education for women and girls about HIV/AIDS using the red shoe as their symbol. Users can tag their pictures with #RockTheRedPump to show their support. Typical posts are from events, putting faces to their movement, and event promotion. Here are a few snapshots:

The images are more colorful and vibrant than those posted by the Chicago Department of Public Health. And some image descriptions have a call to action…asking followers to like and share, comment below, etc. The second picture has 47 likes and most have over 20 likes with comments.

On social media, using calls to action or cues inspires people to do just that. Regardless of the message or reason for using social media, engaging with your target audience is key and helps to expand your reach.

Now, the city of Austin tried something this past April during National Public Health Week. They tasked their audience, the citizens in the city to help them answer a question: What is public health? Instagram users were to snap a picture of what public health means to them in Austin with the unique tag #austinpublichealth.

Such a great idea! Think about it, a photo journey from your target audience about what public health means to them. You could almost use these as unfocused focus groups and see what your audience does with the resources you have provided.

Unfortunately, only 17 pictures were tagged with #austinpublichealth. Bummer.
Here’s what I think could have gone better:

• Promote, promote, promote! If these pictures were to be part of a larger campaign, creative marketing strategies to get the word out could have been used.
• Incentives. As much as we want to believe everyone cares about public health, you sometimes have to lead people with a carrot. There could possibly be red tape with giving away prizes to the best picture, but perhaps an award or certificate could have been used.
• Engage. No other users engaged with the 17 pictures, no one championed the program from the department.

So we’ve seen the good (The Red Pump Project), the bad (Stanley Cup winning Chicago…I’ve got to throw my hometown a bone!), and the different (#austinPublicHealth). The biggest take-away from this would be inviting engagement.

• Tell people what you want them to do, kindly. Share this post! Double-tap if you think #vaccines rock! 
• Take interesting pictures. We see your event posters all over town and we’re just as blind to them online as we are in real life. Snap a shot of a child wearing a bike helmet and elbow pads instead of a flyer with Bike Safety Tips listed. 
• Be a real person. People want to engage with other people, not ambiguous brands or images.
• Test NEW things. Don’t be afraid to try things out and don’t feel bad if they fall flat! 

And since we are discussing trying new things, have you tried Instagram Video? How do you like it compared to Vine? I think the length is going to be great for public health professionals, much better than a 6 second loop. What sorts of videos would you like to see for #publichealth?

(P.S. Comment below and share this with your friends!)

How and Why Should We "Pin" Public Health?

I regularly participate in the social media for public health (#sm4ph) twitterchat.  The chat (sponsored by the Public Health Management Corporation and hosted by Jim Garrow) explores various forms of social media use and how they impact (or could impact!) public health.  Back in March, the following question was posed to twitterchat participants:

At the time, I took note that several participants (including me) thought that Pinterest could be "the next big thing" (FYI: Pinterest is an online pinboard that allows users to create and share image collections):

Then this week, Nicole Ghanie-Opondo posed an important question to the field:  "Is Public Health Pinnable?"  She does a great job of breaking down all the "stuff" public health people want to pin (i.e., campaign posters, event information, staff photos) and analyzing why or why not it is a good fit for this particular communication channel.  She also emphasizes the key principle we need to remember and revisit in health communication:  

Think About Your Audience!  

When exploring any new communication channel, we need to review available data regarding the demographics and online behaviors of those users (whether it be Pinterest or Facebook or Twitter) and then tailor our content/strategies to those users.  The Pew Research Center's Internet & American Life Project is a great resource for social media user data.

In preparation for this post, I followed up with Nicole to see if she had received any feedback from public health colleagues on her post.  She shared the major theme from her (informal) feedback so far:  

Public health is not creating content to optimize pins.

I thought that was really interesting and it changes the conversation for me.  The question is not: "Should we use Pinterest- yes or no?"  There seems to be enough evidence that Pinterest is a promising communication strategy.  For instance we have: (1) strong interest in Pinterest from the field (as seen above), (2) available data on its users, (3) key audiences represented among users (e.g., women), and (4) colleagues that are successfully integrating this channel into their social media plans (e.g., CDC and Hamilton County Public Health).

Therefore, the question should become:  "How can we use Pinterest strategically in public health?"  This approach would require a discussion of the following questions:

• What audience/s should we be engaging on Pinterest?
• What kinds of content/images are most likely to be re-pinned or shared?
• How can we optimize our content for pinning?
• How are we evaluating our Pinterest efforts? (*Note that CDC's National Prevention Information Network (NPIN) recently had a wonderful webcast on social media evaluation. While Pinterest was not one of the featured channels, many of the concepts and resources would still be applicable.  The slides are available here).

Tell Me What You Think:

• Why (or why not) should we "pin" public health?
• How should we "pin" public health?
• What other planning questions should be considered?
• Please share examples of Pinterest being used successfully (or unsuccessfully) in public health!

Let's Give Paris Jackson Some Privacy and Revisit Safe Reporting on Suicide (and Attempts)!

I always cringe when the announcement of a celebrity suicide or suicide attempt comes through my news feed.  First and foremost, because it is incredibly sad to learn that anyone is suffering enough to consider suicide.  Second, because the news coverage that will follow is often invasive and downright dangerous to the rest of us.  The way the media covers suicide can influence behavior negatively by contributing to contagion or positively by encouraging help-seeking.  I have often written on this topic for Pop Health and even as an op-ed for the Philadelphia Inquirer.  However, the message is so important that it bears repeating.

According to multiple news outlets, Paris Jackson (daughter of the late Michael Jackson) was hospitalized this morning after a suicide attempt.  The story was apparently confirmed by her biological mother Debbie Rowe- Paris was hospitalized with cuts on her wrists.  Now I was already concerned that a 15 year old girl was having these personal, medical details released to the media.  Then I saw the coverage on TMZ and just got plain angry.  I won't link to it here because (1) the irresponsible coverage could be dangerous to readers and (2) I refuse to drive traffic to their site.

As a journalist (or public health communication professional) working on this story, your first stop should be Recommendations for Reporting on Suicide.  Although the guide focuses on suicide, the recommendations are highly relevant for attempt stories as well. The recommendations were developed by leading experts in suicide prevention and in collaboration with several international suicide prevention and public health organizations, schools of journalism, media organizations and key journalists as well as Internet safety experts. The recommendations are based on more than 50 international studies on suicide contagion.  Based on their recommendations, here are some of my concerns with the Paris Jackson articles:

• Sensational headlines:  E.g., "Paris Jackson Attempts Suicide, Rushed to Hospital" (US Weekly)
• Oversimplification:  E.g., "A source close to the family tells Entertainment Tonight exclusively that the reason Paris attempted suicide is because she wasn't allowed to go to a Marilyn Manson concert".
• Including photos of the method of death (or in this case attempt):  TMZ has published multiple pictures of Paris (some undated) that zoom in on her wrists to identify possible cutting scars.  This is bad for several reasons:
• 1- Without any confirmation, the writers are suggesting that Paris has a history of suicide attempts.
• 2- The writers are suggesting that anyone who cuts their body is attempting suicide when in fact, some self harm behavior is non-suicidal.  A good resource for definitions of various forms of self-directed violence comes from the Centers for Disease Control and Prevention (CDC).  There can be self harm behavior (like cutting) without the presence (whether implicit or explicit) of suicidal intent.  

A lot can be learned in public health by monitoring this media coverage, highlighting mistakes, and reinforcing safe messaging.  The Paris Jackson articles should:

• Inform without sensationalizing
• Provide valuable education to readers (including suicide warning signs, ways to help a friend/family member, and resources like the National Suicide Prevention Lifeline)
• Seek advice from suicide prevention experts before reporting on data or making assumptions about Paris' intentions or medical history
• Be hopeful! Emphasize that mental illness is treatable and many local and national resources exist

Resources:

1.  Associated Press (New!) Stylebook Entry on Mental Illness
2.  Recommendations for Reporting on Suicide

3.  The National Suicide Prevention Lifeline 1-800-273-TALK (8255)

What Do You Think?

• What was your reaction to the media coverage of Paris Jackson's suicide attempt?
• What other resources would you add to my list to support safe media reporting on suicide and attempts?

Angelina Jolie's "Medical Choice" Dominates the Internet

I woke up this morning to the quintessential Pop Health story.  Angelina Jolie published an op-ed called "My Medical Choice" in the New York Times.  She talks about undergoing a preventative double mastectomy in February 2013 after genetic testing revealed that she carried the BRCA1 gene.

As I inventoried her column and the online chatter today, I worried that I missed the boat!  Dozens of bloggers and news outlets wrote about her op-ed within hours of its posting...what else could I add to the conversation?

With so many posts for readers to sift through- many of which focus on very specific issues (e.g., the efficacy of preventative mastectomies)- I decided to add to the conversation by cataloging the public health implications being discussed:

Angelina as a "champion" for breast cancer prevention: will her celebrity status help or hurt the cause?:  Most of the articles and comments that I read in response to her op-ed were overwhelmingly positive.  This is exemplified by an open letter on KevinMD.com written by Dr. James Salwitz.  He praises Angelina for her bravery and leadership in the battle against breast cancer.  He goes on to state, "Your action will save more lives than all the patients I could help, even if I were to practice oncology for hundreds of years".  On the flip side, a few writers/commenters raised the concern that Angelina's influential status in conjunction with her decision to have surgery could cause women to panic about their own breast cancer risks.  For example, David Kroll writes for Forbes, "For all the bravery of Ms. Jolie and the positive groundswell that her op-ed generates, I also want to be sure that women with breast cancer - women who are already scared - do not feel the extra burden that they’re not doing enough if they don’t consider a double mastectomy".

I thought that Linda Holmes (of NPR's pop culture blog) did a really nice job of reconciling Angelina's role as both "celebrity" and "champion" in her post called "Why Angelina Jolie's Op-Ed Matters".

Legal and Policy Issues:  BRCA Genetic Testing:  On April 15, 2013, the Supreme Court heard oral arguments challenging Myriad Genetics' patents on "the breast cancer genes".  As a side note: I do not remember hearing about this story last month- perhaps because the Boston Marathon bombings also took place on April 15th?  The concern is that such patents inhibit scientific advancements, keep testing costs high- and therefore limit access to the testing.  Angelina alludes to this in her op-ed when she reveals that the BRCA1 and BRCA2 testing costs approximately $3,000 in the U.S.  Sarah Kliff from The Washington Post notes that this testing "is about to get significantly less expensive: The Affordable Care Act included the genetic test among the preventive services that insurers are required to cover without any cost sharing".

Health Communication- Risk Perception:  Nancy Shute wrote an interesting piece for NPR entitled, "Angelina Jolie and the Rise of Preventative Mastectomies".  She interviews Dr. Todd Tuttle, who raises concerns about women overestimating their risk of breast cancer (in the other breast after being diagnosed on one side) and choosing more invasive treatment like mastectomy when not medically necessary.  Shute also discusses some potential contributors to the increases in risk perception and preventative mastectomy. For example, she mentions advancements in breast surgeries/reconstructions and the "hyper-awareness" of breast cancer resulting from ubiquitous pink ribbon campaigns.  Many of these contributors were discussed two weeks ago in the must-read The New York Times Magazine article "Our Feel Good War on Breast Cancer" by Peggy Orenstein.

Reviewing the Evidence Base for Recommending BRCA Testing or Preventative Mastectomies:  Many articles focused on reviewing what we know about the effectiveness of (1) BRCA testing for predicting cancer and (2) mastectomies for preventing cancer death.  Several articles linked to the CDC feature, "When is BRCA Genetic Testing for Breast and Ovarian Cancer Appropriate"?  Sarah Kliff discusses why "Most Women Probably Shouldn't Get the Cancer Screening Angelina Jolie Did".  NPR linked to a 2010 Journal of the American Medical Association (JAMA) article that provided the "clearest evidence yet that women carrying the BRCA1 and BRCA2 genes should consider preventive surgery because they are at a very high risk for breast and ovarian cancers."

With so many articles and blogs to sift through, I could probably keep going.  But I'd like to stop and hear from you:

• What other public health implications could result from Angelina Jolie's disclosure in today's New York Times?
• How do you think her disclosure could impact the issues I've raised above- risk perception, policy decisions, etc?
• I've linked to some of the articles that I read today- are there others that you would recommend to me and Pop Health readers?

"Call Me Crazy": Lifetime's New Movie That Champions Hope and Resilience Around Mental Illness

*Warning: it was difficult to write this post without including a few small spoilers, but I hope you'll watch the whole film anyway.

On Saturday April 20th, Lifetime debuted "Call Me Crazy: A Five Film".  The film (which boasts a star-studded cast and director list) includes five short stories that examine the impact of mental illness from various perspectives.  Each story is named after the main character: "Lucy", "Grace", "Allison", "Eddie", and "Maggie".

In the first story, we are introduced to Lucy (played by Brittany Snow).  Lucy, a law student, has recently been admitted to a psychiatric institution after experiencing a schizophrenic episode.  She is struggling to see how she can live a "normal" life that includes relationships and a career.  Her clinician encourages her to finish law school because she has insight into something very few people understand (mental illness)- so who knows how many people she could help?

In "Grace", we meet a daughter who has been living with a bipolar mother for her entire life.  Grace is played beautifully by Sarah Hyland from "Modern Family"- I loved seeing her in a dramatic role.  We see the "highs" and "lows" of her mother's condition.  We also see the devastating impact that it has on Grace's life when it is not treated.  Grace often plays the role of caretaker- making sure her mother is safe.  We see her struggle to have her own life aside from her mother's illness.

"Allison" offers the viewers a twist.  She plays Lucy's younger sister.  So we step back from Lucy's view and we see how mental illness has affected her entire family.  Allison's childhood, her sense of safety, her relationship with her parents- were all changed as a result of her sister's illness.  She has bottled up a lot of anger and finds it difficult to support her sister through her recovery.

"Eddie" introduces the only male main character.  He is suffering from severe depression.  He has withdrawn from his wife and his friends.  He has stopped receiving help from his therapist.  We watch his wife intervene after discovering that he may be thinking about suicide.

Finally, "Maggie" introduces topics that (unfortunately) are all too common these days- post traumatic stress disorder (PTSD) and military sexual trauma among our returning veterans.  Maggie (played by Jennifer Hudson) was victimized during her time in the Army and its lasting impacts are threatening her ability to have a healthy relationship with her family.  Here we get another update on Lucy- she is now a lawyer and is representing Maggie in court.

While each story stands on its own, Lucy's story is woven throughout "Allison" and "Maggie" as well.  I really liked this strategy.  Not only because I became invested in her character during the first story...but also because seeing her evolve over time helped to demonstrate some key themes from this film- hope and resilience.

As Lucy says to Maggie: "I am living proof". [Of what?] "That there is hope".  In court, Lucy reminds Maggie's judge that having mental illness does not mean that you are a bad person or a bad mother.  She also reminds him about the importance of social support, "it is nearly impossible to get well alone".  Even though we see all of these characters at their lowest point- there is still hope that they can feel better, have strong relationships, and contribute positively to the world.

It seems fitting that Brittany Snow's character delivers these messages about hope and resilience, as she is a strong advocate for them in real life.  Together with the Jed Foundation and MTV, she founded Love is Louder.  Love is Louder is an inclusive movement that amplifies messages of love and support to combat negative messages resulting from bullying, loneliness, and stigma.  She has also publicly shared her own battles with anorexia, depression, and self harm.

As a health educator, I highly recommend this film as a resource for discussing mental illness, suicide, stigma, social support, and help-seeking.  Since each story is approximately 20 minutes, they can be broken down into segments or watched all together.  This film is a great example of Entertainment Education, which is an area of public health that acknowledges the strong impact that television and movies play in educating the public about health issues.

If you or someone you know is struggling with a mental illness, please reach out:
National Suicide Prevention Lifeline (1-800-273-8255)

A Pop Health Book Review of “In the Kingdom of the Sick: A Social History of Chronic Illness in America”

In 2009 I read "Life Disrupted: Getting Real about Chronic Illness in Your Twenties And Thirties".  Since the book inspired me personally and professionally, I was delighted that Twitter enabled me to connect directly with the author Laurie Edwards.  I was even more delighted when she asked to interview me for her new book, "In the Kingdom of the Sick: A Social History of Chronic Illness in America".  Since Pop Health focuses on health communication and the coverage of public health issues in the media, we had plenty of mutual interests to discuss!

"The very nature of chronic illness- debilitating symptoms, physical side effects of medications, the gradual slowing down as diseases progress- is antithetical to the cult of improvement and enhancement that so permeates pop culture." 
("In the Kingdom of the Sick", page 34)

Early in the book, I found this quote incredibly powerful.  It is true.  Our society values and spotlights those that overcome adversity- those that inspire us- those that beat the odds.  Before his fall from grace, we can all remember the worldwide cheering for Oscar Pistorius- making history last summer for being the first double-amputee to compete in the Olympic games.  Edwards highlights those societal values in her book by drawing on the imagery found in many commercials for breast cancer research and fundraising.  Those commercials show an unforgettable image, a "cancer survivor triumphantly crossing the finish line in her local fund-raising event surrounded by earnest supporters."  That triumphant image is a far cry from what Edwards and colleagues term the "Tired Girls" (i.e., female patients suffering with "invisible illnesses" like fibromyalgia, chronic fatigue syndrome, and migraines).  "The Tired Girl stands for so much that society disdains:  weakness, exhaustion, dependence, unreliability, and the inability to get better" (page 103).

The good news is that many of the "Tired Girls" (and Guys) are getting connected and getting empowered.  Edwards dedicates a significant portion of her book to the discussion of "patients in the digital age."  She describes the emergence of "e-patients" (those that are empowered, engaged, equipped, enabled) and how they are using technology to actively participate in the development of their care plans, connect with patients with similar diagnoses, give voice to their experiences, advocate for policy change, and debate controversial topics like vaccinations.

As a public health professional with significant interest in health communication, I was fascinated by a recurring theme that Edwards highlights from these conversations among empowered patients and writers:

"How does language influence the illness experience?"          

The reader is led through an intriguing discussion of the use and implications of terms such as:

• Illness vs. Disease
• Illness vs. Chronic Condition
• Illness vs. Disability
• Military Metaphors (e.g., "the battle against disease")
• Chronic Pain Patient vs. Patient with Chronic Pain
• Healthy Disabled vs. Unhealthy Disabled
• Patient (does it connote passivity?)

"In the Kingdom of the Sick" is a fascinating read for anyone with a personal and/or professional connection to chronic illness.  It begins by giving you a strong foundation in the history of illness, research, and patient advocacy movements.  It then challenges you to consider the impact of advances in patient rights, science, communication, and technology on the incidence, treatment, and perception of chronic illness.  I highly recommend this book to my Pop Health readers, friends, and colleagues.

If you are interested in connecting with Laurie Edwards:

Website:  http://www.laurieedwardswriter.com

Blog: http://www.laurieedwardswriter.com/blog

Facebook:  http://www.facebook.com/laurieedwardswriter

Twitter:  https://twitter.com/achronicdose 

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?