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 

"Girls" Tackles OCD: What I Hope IS NOT Happening In Our Emergency Departments

This afternoon I had the pleasure of having some downtime- so I used it to catch up on the three recent "Girls" episodes sitting on my DVR.  Having avoided spoilers, I was surprised and saddened to see Hannah (Lena Dunham) being consumed by Obsessive Compulsive Disorder (OCD).  We learn that she had a serious bout with the condition once before- in high school.  It was so serious that she sought professional help and medication at that time.  Flash forward to her post-college life and we see her plagued again...perhaps triggered by the stress of a recent break-up and a looming book deadline.

While there are several disturbing issues in the most recent episode "On All Fours" (you can see the comments in Alan Sepinwall's review for those details), I want to focus specifically on Hannah's trip to the local emergency department (ED).

I was very upset watching this scene and I'll tell you why:

We know that emergency room providers are key gatekeepers for those who are suicidal and/or suffering from mental illness.  Research tells us that 1 in 10 suicides are by people seen in an emergency department within 2 months of dying.  Acknowledging the importance of this gatekeeper role, leadership organizations in suicide prevention have created a variety of toolkits and resources to educate and train emergency department personnel to identify patient warning signs and assess their risk.

In "On All Fours", Hannah visits the ED after obsessively sticking a Q-tip in her ear, getting it stuck, and experiencing pain.  After lying to her parents by saying she has "12-15 good friends" to accompany her to the ED, she goes alone.  The scene opens with the doctor telling her, "Well, you must be feeling pretty silly."

As the doctor examines her injured ear, Hannah says:

"I've just been having a little trouble with my mental state."
"I have a lot of anxiety and I didn't think stress was affecting me but it actually is."
"I'm not saying this was an accident, but I was just trying to clean myself out."

At no point does the doctor respond to any of these statements.  He is all business, telling her to follow-up with a specialist if she is still experiencing pain in a few days.  As Hannah lays down so he can put antibiotic drops in her ear, she pleads with him to look at her other ear.  He snaps at her "there is nothing wrong with the other one."  Hannah cries on the bed because it (the drops? her situation?) hurts so bad.

He discharges her and she walks home alone.  In just a t-shirt and no pants.

Now I'm not saying that Hannah was acutely suicidal or verbalized such a threat in the ED.  However, I am saying that she made several clear statements about her mental health that should have been treated with concern and respect by a competent medical provider.  Her demeanor and her appearance deserved a kind ear, a social worker's visit, someone to ask if she was all right.

These recent episodes have been applauded for their accurate portrayal of OCD.  I hope that a future episode will show a portrayal of a caring and skilled provider using the public health prevention and education tools that are available to assist someone in desperate need of help.

For any readers that may need help:

• The National Suicide Prevention Lifeline:  1800-273-TALK
• Substance Abuse & Mental Health Services Administration: (SAMHSA) Mental Health Treatment Finder

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?