A Pop Health Book Review of "The Immortal Life of Henrietta Lacks"

This book is not brand new; it has been out for about a year. However, it continues to pick up momentum and be read by book clubs across the country. Therefore, after it was recommended to me by my mother-in-law, I thought it would be perfect for a Pop Health Book Review.

As someone who works in public health, I collaborate with our University's Institutional Review Board (IRB) on a daily basis to ensure the safety of our research (for the good of our research team, funder, and participants). And even though I know and understand the importance of the collaboration, it can still feel like a burden to address and document each question that is asked by our IRB (I know many of you would agree!) I see the students I work with roll their eyes and sigh when they have to take the IRB and HIPAA trainings. HIPAA stands for Health Insurance Portability and Accountability Act of 1996 Privacy and Security Rules. The students say, "Yeah...we already know this stuff".

However, this book takes what you "already know" and puts a face on it. It reminds you that it wasn't long ago that people (especially vulnerable people) were experimented on and/or used for research without their consent. Often with sad and deadly outcomes.

Rebecca Skloot, an award-winning science writer, takes the reader on her personal journey (lasting over a decade) to learn about the woman behind HeLa cells. The woman's name was Henrietta Lacks. The original cells were taken from her cervix shortly after she was diagnosed with cancer and before her death. HeLa cells have been vital for many scientific advances, including the development of the polio vaccine.

Henrietta's story, pieced together through more than a thousand hours of interviews conducted by Rebecca, touches on the most essential and controversial aspects of public health and research:

1. Treatment/Research on Vulnerable Populations:

• Henrietta Lacks was a poor Southern tobacco farmer, seeking medical care from Johns Hopkins "colored" ward in the early 1950s. A sample of her tumor was taken and given to researchers without her consent. She was treated with radiation without a discussion about the side effects. Henrietta had no idea the radiation would cause her to be infertile. The hospital convinced her husband David to agree to an autopsy (after he already refused) by saying that the exam "could help his children one day". The autopsy results were later given to a writer who published all the details in his book.

• It is no wonder that the IRB now requires specific training and attention to address research that focuses on vulnerable populations. These include pregnant women, fetuses, neonates, prisoners, children, and other special classes of individuals such as minorities and those that are mentally ill.

• It is no wonder that it can be incredibly difficult to recruit members of these vulnerable groups to participate in research, even today! Henrietta's family spoke of their fears of being snatched off the streets around Johns Hopkins by doctors wanting to experiment on them. Rebecca found research that tales of "night doctors" had filled black oral history since the 1800s. These doctors would kidnap black people for research.

2. Ethical Issues

• This book examines the ethical issues of sharing human tissue. Consent to share human tissue (e.g., those you have "discarded"after a blood test or biopsy), is not the same as consenting to participate in research. Often consent is not required.

• But do researchers and doctors have an ethical responsibility to disclose to the patient if (1) their cells/tissues are unique and valuable in some way, (2) the researcher or doctor has a financial interest in their tissue, (3) the patient's tissue will be used in any way that is contrary to their beliefs?

3. Informed Consent

• Times have certainly changed since 1951 when Henrietta Lacks was subjected to tests and procedures without giving informed consent. Unfortunately, it took about 50 years to get there. Her husband and children were still left in the dark regarding the purpose of blood tests in the years after her death. Scientists wanted to map their genes. The family thought they were being tested for cancer. They waited years for results that never came.

• Most of Henrietta's family only completed school until their early-mid teenage years. Even when the doctors explained parts of procedures, it was not at a level or in a way that was familiar to them.

• This book emphasizes the importance of being "informed" in the consent process. If the participants don't understand, their verbal or written consent means nothing.

All of these important issues are discussed with beautiful storytelling by Henrietta's family and Rebecca's careful research. It is a must read, especially for my fellow science and public health friends out there.

You'll find yourself cheering for Henrietta's daughter Deborah and her siblings, who have all endured more than their share of suffering. And probably most important, you'll find yourself making a pact to never sigh when it is time to complete the annual IRB training.

The Role of Social Media in Emergency Preparedness and Recovery

Last month I attended a presentation about a research study which evaluated the content of State-level emergency preparedness websites. The reviewers were looking for the presence of essential components such as clear contact information and links to federal emergency preparedness resources. I raised my hand and asked, "Are you evaluating these websites/organizations for a social media presence?" I used the example of the most recent Philadelphia "emergency" I encountered, 15 inches of snow. I did not go onto the city's emergency management website for information. I follow NBCPhiladelphia and SEPTA (the city's mass transit system) on Twitter. So I looked at my phone to find out what offices were closed and which buses/trains were running or cancelled. As always the key question remains, how does your target population get their information? What systems will still be working in an emergency (e.g., what if you lose electricity or internet?)

Since last Friday, we have all been watching the sad and heartwrenching images from the earthquake and tsunami in Japan. And you may wonder, with so much of the country affected, how will people make contact with their loved ones and how will the government get critical information out quickly? This morning, Mashable ran an article called, "Social Media Plays Vital Role in Reconnecting Japan Quake Victims with Loved Ones". While the earthquake knocked out electricity, the internet remained largely intact. The US Embassy in Tokyo is trying to take advantage of this fact and is encouraging Americans in Japan to contact their loved ones via text message and social media (i.e., Facebook and Twitter). Facebook and Twitter analytics from the day of earthquake show incredibly high usage.

A recent post on the Federal Emergency Management Agency (FEMA) blog discusses how social media is being considered as a key element in emergency preparedness. FEMA administrator Craig Fugate discusses a January 2011 planning meeting in which he met with the founder of Craigslist and editors from Wired, Twitter, Apple, and Facebook. He reports that they discussed:

• "The need to provide information to the public as data feeds, because they are a key member of our emergency management team"
• "The importance of referring to people impacted by a disaster as survivors and utilizing them as a resource"
• "The importance of providing good customer service"
• "How [emergency managers], need to stop trying to have the public fit into our way of doing things and receiving information, but that we should fit the way the public gets, receives and seeks out information"

It is great to hear that emergency managers are identifying social media as a powerful tool and planning how best to take advantage of it during an emergency.

Other online resources for making connections after a tragedy include:

Google Person Finder : This google service is used in the aftermath of such tragedies and allows users to click, "I am looking for someone" or "I have information about someone".

Red Cross Family Links: The purpose of this website is to help people get connected after being separated by disaster or conflict. Currently, there are links for Japan, Bosnia, Kosovo, Nepal, Iraq, and Somalia.

HHS and Data and Technology, Oh My!!

Last week I had the pleasure of attending a talk called, "Unleashing the Power of Open Data to Improve Health" organized by The College of Physicians of Philadelphia-section on Public Health and Preventative Medicine. The speaker was Todd Park, the Chief Technology Officer for the US Department of Health & Human Services (HHS). I have to admit, I was expecting something a little dry (having received my fair share of power point overload at government sponsored presentations). Wow- was I surprised to find Mr. Park on a wireless microphone running up and down the aisles engaging members of the audience!

The presentation focused on how HHS is living up to President Obama's "Open Government Initiative", which promises to have a "system of transparency, public participation, and collaboration". In terms of health data, Mr. Park said let's stop making people find data. Instead, let's "make data find people". In order to develop channels to help data find us, HHS has been engaging leaders from many areas of popular social media and technology (e.g., YouTube and Smart Phone application development). The government team has been sending the message "the data is yours...let's see what you do with it". In order to get the creative juices flowing, HHS has held and continues to hold "Health 2.0 Developer Challenges". The most current being the "Go Viral Collegiate Challenge" which calls on multidisciplinary teams from colleges and universities to develop a web or mobile application to address a significant health problem facing their communities.

Check out some examples of data applications produced through the use of open government health data:

• Community Clash: An online card game that engages you in a discovery of your community's health and well-being status and let's you see how it compares to other communities in a head-to-head clash. (*Warning- apparently this game is incredibly addicting!)
  

• Asthmapolis: A device that uses global positioning satellite technology (GPS) to determine the time and location when an asthma inhaler is used. The data is then stored on a server. The user can use this device to track asthma symptoms, triggers, and medication use- which could lead to an identification of environmental or other factors which improve/worsen their condition.

In addition to these challenges, HHS has also launched multiple websites to assist with the dissemination of this open health data. For example, HealthData.Gov and HealthIndicators.Gov. While this is all fabulous (and I really enjoyed looking at the challenge applications), how is this initiative being evaluated? Is the ultimate goal just about numbers? Does HHS just want to increase the number of people/organizations that are using health data? Do they just want to increase the number/types of data sources they can make available? Or is there some evaluation of the quality and accuracy of what is being produced? The challenge application website is sure to point out that the applications were not produced with federal money and therefore the government does not endorse them. But are they somehow creating an inventory of the applications and evaluating their effectiveness? Do we know which ones are actually increasing knowledge and changing behavior? Are we learning from the ones that do not? I applaud all the excitement around this initiative, but as always- I'm interested in seeing the outcomes. How will this initiative, which "unleashes the power of open data" actually improve health"?

Michelle Williams is Working to Reduce Barriers to Exercise for Single Moms

As I got my hair cut on Friday, I paged through the February 2011 issue of Marie Claire Magazine. As a major "Dawson's Creek" fan in the 90s, I am always excited to read about the old cast. What a pleasure to read the interview with February's cover girl- Michelle Williams.

As always, she was asked the question about how she coped with the death of her ex-fiance Heath Ledger. This time she spoke about the practice of yoga and how it helped her work through the grief.

The interview introduced us to a project which Michelle helped create called The "Yoga for Single Moms"Project. The project pilot is in Boston and seeks to effectively address key barriers to exercise for single mothers:

1. Expense (of a gym or yoga studio)

2. Childcare

3. Social Support

Michelle tells the magazine, "The idea behind the program is that if you can clear the time, we do the rest. It provides childcare while the mum is in the yoga class, and it's all free."

I'll be watching to see how they evaluate the program and how/if it rolls out nationally. But it appears to be off to a good start as it goes beyond simply educating women about exercise and telling them that they should. The program seeks to work for a single mom's environment, schedule, and unique challenges. Great job Michelle.

A Pop Health Book Review of “Unbearable Lightness”

Welcome back readers! After a holiday, bronchitis, and work travel hiatus- Pop Health is back with a new feature- reviews of books which examine public health and popular culture issues.

Over the weekend I finished reading “Unbearable Lightness- A Story of Loss and Gain”, by Portia De Rossi. I actually mentioned this book back in a November post when it first came out. The story chronicles Portia’s struggle with both Anorexia and Bulimia from approximately age 12 to the present. The strength of the book is in its ability to portray the absolute complexity of an eating disorder. Sometimes these disorders (and other mental or physical health issues) are over simplified. For example, the commonly held belief that someone is Anorexic simply because she/he needs to “have control over something”. However, in Portia’s case, she wove an incredible story that examined causes at multiple levels. And in public health, this multilevel thinking is essential for the development of effective interventions. I have decided to begin with the causes most closely associated with Portia herself and work my way out.

Intrapersonal:

Portia endured a complete lack of healthy coping mechanisms. She dealt with a lot of sorrow and changes in a short amount of time as an adolescent growing up in Australia. Her father passed away and she changed to a more affluent school district. She worked to cope with these challenges by identifying a way to be “special” and “stand out”. She chose modeling because models are special. She also changed her name when she was 15. There was another girl her age with the same name (Amanda Rogers), so she changed it to Portia De Rossi to be more unique.

Portia also felt intense guilt and shame over being gay. Although she realized her sexual orientation early on, she kept this secret until her late 20s. Much of her self hatred focused on feeling as if she was disappointing her family and would ultimately ruin her chances to have a successful career and “normal” life.

Interpersonal:

Portia’s relationship with her mother is examined in quite a bit of detail. Throughout her modeling career as a teenager, her mother was definitely her accomplice in yo-yo dieting. Her mother taught her “dieting tricks” to lose the weight quickly for jobs, but also rewarded her with McDonald's after auditions. However, her mother’s strongest influence seemed to be over the guilt and shame she felt over being gay. After she came out to her mother, the response was “let’s just keep this to ourselves”. Portia was told to keep it from the family and from employers/co-workers.

Besides 1-2 friends and her brother, Portia is very isolated. In addition, her relationships with co-workers on Ally McBeal and other colleagues in the industry seem to have contributed to her eating disorder as well. For example, two of her co-stars (Calista Flockhart and Courtney Thorne-Smith) were famously accused of being Anorexic and underweight throughout the show’s run. So Portia was constantly working with and compared to an unrealistic ideal. In addition, many people who could have and should have recognized the problem and intervened- stayed silent. For example, as Portia dropped from a healthy 130 lbs to sub-100s, her costume designer told her she looked fantastic and asked for her secrets to weight loss. Portia also sought the help of a professional nutritionist. Even though she confided to binging and purging on the first visit, she was still given a food scale and a diet to help her lose weight. The nutritionist did not try to intervene until Portia was almost down to 82 lbs.

Community/Society:

Portia’s existence in several “communities” contributed to her struggle with eating disorders. Her first professional affiliation in the modeling community in Australia is where she developed a strong knowledge of dieting, purging, and excessive exercise. The “older girls” taught her this. It was the norm in that group to be unhealthy in order to get ready for a job.

From Australia, Portia traveled to the United States and the “Hollywood Industry”. Unfortunately, it was a smooth transition from the unrealistic expectations of the modeling to the acting industry. She describes a particularly gut-wrenching fitting that she endured when a photo shoot had to be rescheduled after the client realized that she was in fact a size 8- so no selected clothes would fit her.

In addition to body size, she also felt Hollywood was not accepting of a homosexual lead actress. Several times she spoke of the paralyzing fear she felt after seeing how quickly Ellen DeGeneres’ show was canceled after she came out in the late 1990s.

This is just a brief overview of these complex contributors to Portia’s eating disorder- I could easily go on for many more pages. Overall, I think the book is a fascinating read…for those of us interested in public health, eating disorders, and/or Hollywood. It portrays Portia’s struggle, self hatred, and self destruction with brutal honesty- so be prepared.

A closing word of caution: this book may not be appropriate for someone with a current or recently recovered eating disorder, since it outlines her eating, binging, and exercise rituals in incredible detail.

Calling the Sugar Plum Fairy Fat and Other Ways To End Up on the Naughty List!

Back in the mid 1990's I first began getting interested in public health. One of my first areas of interest was around eating disorders, especially among female athletes. Many of you may remember the book that sparked my interest, "Little Girls in Pretty Boxes".

This book focused on body weight/image pressures among female athletes in elite gymnastics and figure skating. The book is heartbreaking, following several athletes along paths of injury and disordered eating...many of which lead to permanent injury or death. Even though the book is almost 15 years old, I sometimes wonder if we've even learned anything from those stories.

On NBC's Today Show this morning, Jenifer Ringer was a guest. She is a New York City Ballet principal dancer, currently playing the Sugar Plum Fairy in The Nutcracker. Her name has been all over the blogosphere in the past week after a critic for The New York Times Dance Section wrote that "she looked as if she'd eaten one sugar plum too many".

In response to the outrage over his comments, the critic (Alastair Macaulay) published a second editorial five days later called "Judging the Bodies in Ballet". His primary argument- judging the body is fair game in ballet. "If you want to make your body irrelevant to criticism, do not choose ballet as a career". And I would assume that he would argue that the same goes for gymnastics or figure skating, where the body is actually part of the art form. But if that is true, how does the cycle of pressure and expectation ever get broken? Are you asking for criticism if you choose to participate in one of these sports?

In public health, we often make much more headway by changing laws/policies versus changing any one individual's opinion. In that spirit, there have been some systemic changes that have made these types of sports safer for young female athletes. For example, a minimum age limit for Olympic competition was enforced (even though some countries have cheated), hoping that it will help with wear and tear on young bodies that can not yet handle the intense training. Changes have been made to make the equipment safer. For example, after many serious injuries occurred on the women's vault in gymnastics, their pommel horse was replaced with a "vaulting table" that was more appropriately sized and padded.

So minimum ages and safer equipment are wonderful, but what will help with the unrealistic body image problem? In her Today Show interview, Jenifer shared that the New York City Ballet has all types of bodies on the roster, including hers that is more "womanly". I guess that's a good start. If ballet companies can model variety and acceptance and strength for their audiences (including aspiring ballerinas), that can begin to change perceptions of what is "normal". And the outrage shown by readers of the critic's comments. I guess that's a good start too.

Shame on you Mr. Macaulay for picking on the Sugar Plum Fairy.

In Honor of World AIDS Day: Can Celebrity "Digital Deaths" Prevent Real Deaths from HIV/AIDS?

Kim Kardashian, Ryan Seacrest, and Lady Gaga are all dead! No, not really...but they are considered "Digitally Dead" for today- World AIDS Day (December 1st). These celebrities and many more joined forces with a charity co-founded by singer Alicia Keys called Keep a Child Alive. The charity provides treatment, love, and support to families affected by HIV/AIDS.

For today's campaign, celebs were pictured in coffins, featured in "last video testaments", and pledging to stay digitally silent on their social media accounts (i.e., on Facebook and Twitter) until their lives were "bought back" by donors reaching a minimum of one million dollars total. Although the images of celebs in coffins were a little creepy, Keep a Child Alive co-founder Leigh Blake says:

"We're trying to sort of make the remark: Why do we care so much about the death of one celebrity as opposed to millions and millions of people dying in the place that we're all from? Its about love and respect and human dignity."

It is an interesting concept for a health communication/advocacy campaign. Usually when campaigns advocate via social media, it is done by bombarding their followers with messages and links to donate or sign up to assist the cause. Here, the campaign is trying to motivate donors by having an ABSENCE of the celebrities' voices. How powerful is that absence? Will the public really miss reading celebs tweets and facebook status updates? Apparently so. As of tonight on Twitter, Kim Kardashian had 5,467,107 followers and Ryan Seacrest had 3,683,658 followers. So whether we like it or not, the voices (and silences) of these celebrities matter in our communities.

While I do think the campaign will have large reach, I will say that their coffin posters left room for improvement. I've analyzed health communication campaigns on this blog before, and the key is always- "What is the cue to action? Does the audience know what they are supposed to do after seeing the poster/brochure/PSA?" Well- when I first saw this poster of Kim Kardashian, I had no idea what it was about. I had to Google and read the narrative about the World AIDS Day campaign for Keep A Child Alive. For this blog post, I had to blow the image up over 100% to read the text on the bottom of the poster. It reads,

"Kim sacrificed her digital life to give real life to millions of others affected by HIV/AIDS in Africa and India. That means no more Facebook or Twitter until we buy her life back". Then the charity website and text number were provided to accept donations. In future campaigns, they would want that text to be much bigger. It should not take the audience several minutes, a Google search, and a magnifying glass to figure out what they are supposed to do to help poor Kim get out of that coffin.

Overall, I give this campaign a B+ for creativity in using the "absence" of social media messages and targeting celebrities with a huge following and reach to potential donors.