HealthEd Blog

Rheumatoid Arthritis...Breaking Out of the Digital Desert

As a health educator, I have always had a soft spot in my heart for rheumatoid arthritis (RA). I started my public health and health education career with the Arthritis Foundation, Eastern Pennsylvania Chapter, headquartered in Philadelphia. My goal was to help decrease the burden of RA for people of all ages. Yet a challenge exists in such a goal. But these days, things are changing!

 

Over the past few years, the RA population has been increasingly involved in the digital space. It has long been perceived that people with RA are "too old" to be actively using the Internet. However, RA is no longer an "old person's disease". In fact, the majority of individuals impacted by RA are defined as in the "prime of life"—people 20 to 50 years old. We know this age group to be Internet savvy—including when it comes to searching out health information. In fact, the Internet & American Life Project of the Pew Research Center found that 61% of adults looked for health information online. Furthermore, of people looking for health information online, 59% have also engaged in research such as reading someone else's commentary or experience about health or medical issues on an online news group, Web site, or blog; signed up to receive updates about health or medical issues; or shared photos, videos, or audio files online about health or medical issues. 

 

As for older people with RA, Web trends show that a large proportion of the population is actively engaged in digital media. Seventy percent of adults aged 50 to 64 years and 38% of adults 65 and older use the Internet. Also, according to the Pew Research Center, the steepest increase in Internet use has taken place among adults 65 years and older. 

 

While there are no data readily available on the Internet habits of people with RA, it is important to note that rheumatoid arthritis is highly integrated into the Internet, with 11,900,000 results from a Google search, as well as in social media, with 284 Facebook pages, 5,130 YouTube Videos, hundreds of active Tweets, and a plethora of online discussion boards. The Internet clearly has a lot to offer people with RA who seek answers in a forum both highly visible and anonymous. 

 

What does this all mean? In my opinion, as the population ages, RA incidence and prevalence increase and Internet usage skyrockets, health education campaigns should incorporate a key digital component. People with RA are looking to learn about treatments, other people’s experiences, and management tips and tools. Because the condition causes pain, inflammation, swelling, and a possible decrease in quality of life, people with RA are a motivated group looking for readily accessible information. Some nonpharmaceutical resources that have strongly supported the arthritis population in this manner includes the Arthritis Foundation (www.arthritis.org), which includes educational material in multiple formats, as well as discussion forums. Also highly used and well constructed for arthritis patients are the following Web sites: the Mayo Clinic (www.mayo.org), the National Institutes of Health (http://www.nlm.nih.gov/medlineplus), and the Rheumatoid Arthritis Talk discussion boards (www.RheumatoidArthritisTalk.com).

 

People with RA aren’t the Luddites or paper-and-pencil group that they were once thought to be. By listening to needs and crafting a solution, we can create an opportunity to help these people learn and manage their condition, and a prime venue for these interventions is the Internet. The vehicle is further reaching now that the RA community is utilizing digital and internet resources. Disease education and management can address public health goals that health educators can be sure to leverage through a digital medium. And because of these assets, I believe I am a bit closer to reaching my goal of decreasing the burden of RA, and this goal continues to get closer every day as we continue to provide accessible and effective education to the interactive RA community.

 

Liz Kovalchik
Health Educator

HealthEd

Is your marketing direct and relevant?

According to organizers, nearly 10,000 people attended the DMA 2010 conference in San Francisco. Direct marketing (DM) titans such as Howard Draft (of Draftfcb) and Rance Crain (of Ad Age) were inducted into the DMA Hall of Fame for their pioneering work. None other than Lester Wunderman (widely regarded as the inventor of modern-day direct marketing) introduced Draft and Crain to the audience.

The conference reinforced the association’s relevance in a changing marketing paradigm. Direct marketing started at a time when mass advertising was king. To this day, most big-brand marketers continue to regard DM as a “below-the-line” marketing expense. However, it is more widely used than most people realize. Apart from e-mail and paper mail campaigns, there is a proliferation of marketing strategies that continue to employ the foundations of direct marketing. Marketers always strive to locate the coordinates of the 4-D marketing axes—audience, message, time, and place. DM definitely brings marketers closer to pinpointing those coordinates. Here are a few tactics that can be classified as DM:

Web personalization—The World Wide Web was founded on the belief that a global information system could be home based. Web personalization enables marketers to communicate with an individual on the customer’s terms. DMA 2010 attracted a few vendors working on the innovative front in this realm. I met with the founder of Optini (a provider of Web personalization marketing), who works with clients to create customized browser add-ons that can revolutionize the Web experience. Optini’s solution tailors the brand experience for customers via targeted display and search placements not just on the company.com but across every major Web property launched from that particular computer and browser.

 
Mobile marketing—While smart phones and apps have generated a lot of buzz since the mid-2000s, only 1 of 4 mobile users has a smart phone today. So, apps and mobile sites cannot be accessed by the remainder of the mobile audience. Text/SMS marketing continues to be the mobile marketer’s best friend. Peter Johnson from MMA (Mobile Marketing Association) presented a SMS marketing campaign case study by Jiffy Lube that increased new-to-brand opt-in leads by 50% and produced larger-than-previous conversion rates.

Search marketing—Keyword searches and content overload provide the direct marketer with a rich insight into the customer’s educational needs, product wants, and decision triggers. Companies such as Google and Amazon have pioneered the personalization approach and make recommendations on content and product based on usage and consumption patterns.

Social media—Unlike the digital tactics described above, social media marketing is where customers prefer to converse about the brand with other customers, and not the sellers. Approximately 160 million unique visitors in the United States spend much of their time (more than 5 hours per unique visitor) on social media, according to Nielsen. Ad Age predicts that by 2013, social media marketing allocation will grow over 4-fold, to about $5 billion. Many marketers in the pharma/healthcare spaces are still unsure of how to use this medium to converse with patients and physicians. At the very least, the social media happen to be the ideal place to listen to what your customers think about you.

The proliferation in new marketing techniques has multiplied advertisers’ choices, and advertisers will have to make tough decisions because of increased marketing accountability. From DM’s earliest days, measurement has been the driver of its methodology, and success or failure could easily be demonstrated with the correct accountability plan. With digital being a highly measurable medium, media buying decisions can now be made on an engagement basis (cost per click/conversion/download), as opposed to the classic reach-and-frequency model. It’s no surprise, then, that digital marketing would be direct.

As an advertiser once said, “I know half my advertising dollars are wasted; I just don’t know which half.” Which half will your marketing activity be part of when that tough decision is made? 

Abel Rajan, MS
Director of Strategy and Analytics, Strategic Services
HealthEd

 

Joe knows innovation. Do you?

I'm at the e-Patient Connections conference in Philadelphia this morning, and Joe Shields from Pfizer has the floor. He's talking about his new role at the pharma giant as director of worldwide innovation, a lofty title that he admits makes him a bit sheepish. But the position gives Shields what he calls a "license for disruption": a mandate to identify cutting-edge ideas and technologies that can help Pfizer become a more patient-centric company.

And he's looking for a certain kind of help.

"I don't really need an ad agency right now," Shields says. "I think the problem is more complex, and I need a different set of people, a different set of solutions."

He tells the audience—which includes some of those very ad agencies, along with patient advocates, healthcare media companies, and his pharma colleagues—that he is setting an innovation agenda for the next 6 months ... and he wants all of us to send him an e-mail with our suggestions, ideas, and advice.

Because Shields is asking, and because I can use the power of blogging to fast-forward several hours into the future, here are a few innovations that I'm pretty sure will make an impression on me today:

• Mobile integration: Connecting cell phones to disease-monitoring tools, such as glucose monitors, may become an easy way for pharma companies to get “beyond the pill” in the near future. I have a feeling that Brian Dolan from mobihealthnews will tell us that mobile operators abroad, including Orange and Airtel, have already joined the mobile health movement. Pfizer’s gravity should be more than strong enough to attract a US wireless carrier, enabling the launch of a monitoring partnership that would ensure patient adherence and probably save lives. (And when Shields is done brokering that deal, I would of course invite him to read more about mobile opportunities in pharma on the HealthEd blog)
  
  
• Mining online conversations: My peers at ListenLogic truly recognize the wealth of data that can be mined from patient conversations in the social media. It wouldn't surprise me if founder Mark Langsfeld shares a powerful graph with conversations about Victoza plotted next to actual prescription data ... a graph in which the volume of “switch”-oriented Victoza conversations accurately predicts the growth curve of Victoza. Shields should pursue development of a corporatewide social media listening program that proactively seeks to bring analysis of Web conversations directly to brand teams and patient marketers
   
• Social tools: If Shields does tap into the power of online conversations, then he also needs to provide some conversation starters: namely, sharable info bites from Pfizer Web properties. He should give a close look to share>>send>>save, a simple yet elegant widget recently launched by Intouch Solutions. Wendy Blackburn from Intouch will almost certainly explain how the tool provides a DDMAC-friendly approach for brands seeking to enable content sharing on their Web sites. Pfizer has both the breadth and the depth in its portfolio to pilot share>>send>>save across multiple disease categories and learn whether “safe” patient sharing can drive corporate business objectives

Shields' brief presentation is coming to a close now, and I can already hear the gears turning at nearby tables. He has created a buzzworthy challenge that deserves much more thought: Where should patient marketers innovate first?

What will you tell Joe?

Jeff Greene
Director of Strategic Services
HealthEd

 

Vote for the HealthEd SXSW Panel!

We are excited for the opportunity to present at the first-ever Health Track at SXSW^® Interactive 2011 conference. Now we need your help. Please vote for our proposed panel, The Customer Experience System & How Patients Learn. Just visit the SXSW PanelPicker, leave a comment, and vote "thumbs up."

What’s a customer experience system? It's an evolutionary approach to online healthcare “marketing” with the goal of creating patient experiences that enhance learning and promote self-efficacy—the ability to manage one’s own care.

HealthEd is particularly interested in customer experience systems because we are building our own system through our subsidiary, HealthEd On Demand. Yet our interest is much broader, as our teams seek to understand how educational approaches can drive better patient outcomes.

SXSW Interactive is the nation’s leading digital and innovation festival, held annually in Austin, Texas. It would be an honor to present, and we appreciate your vote. The SXSW PanelPicker closes August 27!

9 Great Health Track Panels

When you’re at the PanelPicker, please be sure to vote for these other health track panels. We’re happy to recommend them, and we wish their presenters good luck:

–     Minority Report: Social Media for Decreasing Health Disparities
Aimee Roundtree, Univeristy of Houston–Downtown
Key learning: What are best practices for using social and mobile media to increase health literacy, patient education, and activation in minority communities?

 –     Yelping Health Professionals: Patients, Providers & Digital Rights
Keely Kolmes, PsyD, clinical psychologist
Key learning: Are there ways for owners of confidential services to respond to consumer feedback or act on their own behalf without violating legal and ethical standards?

–     Creative Alternatives: What if We Reinvented Healthcare Today?
Robert Fabricant, frog design
Key learning: What would a new/better experience look and feel like, and what role can designers play in creating that experience?

–     Crowd Sourcing Cancer
Alicia Staley, The Staley Foundation
Key learning: Why would anyone want to "crowd source" a cancer-related question or issue?

–     Your Computer Is the Next Wonder Drug
Jonathan Richman, Bridge Worldwide
Key learning: What advances in technology will completely change the way we manage and track our health and how we share that information with others?

–     The New Frontier of Social CRM in Healthcare
Earl Whipple, AstraZeneca
Key learning: How is social customer relationship management in healthcare different from social CRM for other industries?

–     Why Consumers Feel Compelled to Talk About Drugs
Andrew Levitt, HealthTalker
Key learning: Why does pharma need to pay attention to this consumer communication channel?

–     Treating Chronic Disease: New Media and Lifestyle Change
David Ormesher, closerlook, inc.
Key learning: Can we delay the onset of—or reverse the effects of—chronic illness through lifestyle change?

–     Why Nurses Are Vital In Emerging Technology
Phil Baumann, CareVocate LLC
Key learning: How are devices like iPad, iPhone, Android products being used in healthcare?

Jeff Greene
Director of Strategic Services
HealthEd

What social media can tell us about the patient journey

Those of you who attended our presentation this morning at EXL Digital Pharma West can view our slides courtesy of SlideShare:

ExL Digital Pharma West Presentation June 2010

If you weren't able to attend, here are some key takeaways:

• Quantitative measures of pharma buzz can be misleading
• Using qualitative analysis can provide a robust alternative, particularly when findings are put into the context of the patient journey
• The patient journey has far-reaching usefulness for brands: It can provide the building blocks for all phases of a consumer marketing program
• Key intervention points we found along the rheumatoid arthritis journey included Diagnosis, Transition to Engagement, Treatment Initiation, and Moving Forward Through Setbacks
• Pharma brands can use social media conversations to create their own journeys and identify key intervention points, educational needs, and marketing implications along the way

Jeff Greene
Director of Strategic Services
HealthEd

A New Era of Media Content Sponsored by Pharma?

TLC.com recently launched “A Conception Story”, a Web-only reality series that follows the lives of six “dynamic” young (or young-ish) women in their attempts to conceive. And “the idea came not from producers at the network but rather from First Response, a brand by Church and Dwight that makes pregnancy, ovulation, and fertility kits,” according to an article in the New York Times.

Pharma initiating and sponsoring content creation! I decided to take a closer look, to see how the model held up, whether it benefited its audience and sponsor, and whether the same model could be used by other pharmaceutical marketers. Here’s what I found.

 

A good mix of patient-friendly content, but some sponsorship awkwardness

Videos about its 6 heroines form the core of the series, accompanied by the usual online toolbox: blogs that invite comments, discussion boards, educational resources, expert opinions, and partnerships with credible organizations such as the March of Dimes. Though none of it seems remarkably innovative, the package as a whole is harmonious and convincing, especially because the backdrop of the women’s stories infuses the whole site with empathy and relevance.

Much less successful is the repetition of the same, lengthy sponsorship message that appears before the viewer sees any of the women’s stories. This actually dissuaded me from spending more time watching valuable videos. The series needs to test and refine its balance of content and promotion, or risk losing its audience.

 

A sensible format

Television-based reality series often sensationalize the banal or the grotesque and encourage their subjects to expose themselves to the point of ridicule. Though blogs and vlogs created by “everyday people” may be more sincerely motivated, they can also be distressingly mediocre. The format of “A Conception Story” takes the best of both worlds. The women record their own stories, but professionals do the final editing, presenting the women in their best light. The narrative of the clips is tight; the emotions are sincere.

 

The right medium for the right topic

Infertility, and I speak from experience, is tied in with sexuality, social norms, uncontrollable emotions, hormonal fluctuations, and a frightening awareness of the passage of time. It can impact your behavior toward loved ones and your performance at work (especially when you have to skip out to yet another unexplainable doctor’s appointment). Being able to explore videos and resources from the relative privacy of a computer suits the intimacy of the topic, framing it as a meaningful conversation rather than as a voyeuristic take on another person’s life. Moreover, that empathetic, real-world tone may also encourage women to join the series’ online community.

 

Viral potential and extended shelf life

I predict “A Conception Story” will make the rounds quickly enough, especially since it will benefit from the already established audience of TLC.com (as opposed to a more obscure brand.com destination). It may even garner repeated visits over a longer time, because it covers a relatively broad range of situations, from conception through prolonged infertility. A woman could come back to the site time and again because she has identified with one of the series’ heroines or because she has moved along in her journey and is looking for different content and different forms of support.

 

Potential pitfalls

The makers of the show will have to navigate the tensions between sponsorship and authenticity. Too much pushing of product and they can lose credibility—and their audience.

Conversely, giving consumers so open a platform presents its own risks, especially with a topic as controversial as reproduction. In her blog, one of the women links to a music video that references abortion. What if she were to take a virulent stance on reproductive rights? What kind of pressure would that create on Church and Dwight?

Finally, committing to a series with real people without knowing where their journey can take them isn’t exactly for the faint of heart. What if one of the women were to remain infertile over a very long haul? Would First Response marketers still want to document her story even if she chose to adopt—and stopped using their products? Or what if the story took an even worse turn? I’ve known marriages that have come undone over the stresses of infertility. Is that also something that the brand would choose to follow? And if not, how would that affect the audience?

Any marketing situation in which consumers are allowed to express themselves directly holds a very real potential for PR disasters as well as victories. It’s best to be prepared…

 

A model for other pharmaceutical marketers?

Overall, I think “A Conception Story” will benefit both its audience and the makers of First Response products (as long as the company fine-tunes its balance of content and sponsorship). But First Response products are OTC. Would the approach be effective for the marketing and education about prescribed products, which require laborious documentation of frightening side effects and necessitate adverse event reporting? Tough to say.

And would content like this even stand a chance of making it through regulatory if it weren't about an OTC product? The recent warning letter issued to Novartis from the FDA indicates it's less likely to than it was two weeks ago when "A Conception Story" was introduced online.

In any case, pharmaceutical marketers will have to be careful if they want to emulate this sponsorship model. They will need to make the decision on a case-by-case basis only, and never lose sight of the interests of their primary constituents. Patients.

 

Megan Beardsley

Digital Creative Director

HealthEd

Shifting American Attitudes, Part I: Consumer Trends for the Pharmaceutical Industry

At the DTC National Conference 2010 in Washington, DC, in March, Ogilvy (Chicago) and online community research leader CommuniSpace presented findings from joint research on shifting American attitudes. Their white paper, titled “Eyes Wide Open, Wallet Half Shut,” served up 10 key themes shaping America’s “new” mind-set as the country emerges from recession. It also presented significant implications and posed a serious warning for marketers: don't overlook fundamental shifts in consumer thinking.

In this vein, HealthEd explores how these general shifts might play out in more specific attitudes toward the pharmaceutical industry, healthcare, and the broader issue of health itself. This blog, the first in a series, reflects on 2 of the broader consumer trends. In hopes that our perspective on these trends spurs deeper thinking among industry leaders, we welcome your comments.

Trust Lost in Recession
The research presented in the white paper found that in the wake of the recession, trust of large institutions has plummeted. In fact, consumers' circle of trust has narrowed and includes few outside self and close family, with the local community being the furthest it extends. Sadly, pharmaceutical companies count among the large institutions that fall outside the diminished circle of trust, deepening the underlying distrust of the industry that was already a challenge. Further, the wrenching healthcare debate caught up almost everyone and joined the recession-fueled distrust of big institutions to intensify previous attitudes toward the pharmaceutical industry.

As an industry, we must do more, and do better, to make a positive impression. Give Humana’s Horsepower Challenge a try in your local community to demonstrate for yourself how we can build goodwill and trust for our industry. While you’re at it, think about how your patient communications help your brand and help lift the industry. How are you helping the cause?

Stronger Self-reliance
The flip side of narrowing trust, self-reliance is on a significant upswing. And we take the white paper’s observations one step further here as well. In our view, the Internet has liberated the self-reliance trend, especially when it comes to making decisions about health. Patients know about the Internet, they look there more and more for their own answers, and they fill in the gaps—ironically with the industry notably absent from the direct discourse. In the vacuum, patients have turned to one another, having formed communities (Twit2Fit, dLife, or cancercompass.com) around broad health topics, as well as more specific conditions (www.abc-survivors.net/stories/chondrosarcoma, transplantcafe.com, www.epilepsy.com).

Invariably, patients discuss pharmaceutical products they are using. How many of us in the industry care what they are saying? We should. Although few will give credence to the one patient who tells us her medication made her see ghosts, most patients make significantly less fantastical statements that others will (and do) pay attention to.

While these communities are not “local” in the traditional sense, they do provide common ground where people with common health experiences can feel at home with one another. Think of these comunities as pseudo-local, formed by consumers relying on themselves. And oh, by the way, that puts these communities inside the circle of trust.

Implication for the Pharmaceutical Industry
Our industry must find ways to speak through more trusted channels like these. Over the past few years, we've all heard how pharmaceutical leaders have developed “patient strategy” as an important driver of business results for their brands. By now, most recognize a concept known as the “empowered patient” and have given that patient more mind space and focus in their marketing efforts.

As we think it through, this does not necessarily lead to DTC marketing. In fact, it mostly takes the form of very specific, often personal or intimate, communications driven by deep insights about condition, treatment, and the clinical setting where patients interact with the healthcare system.

George Fencl
Director, Strategic Services - CRM
HealthEd

DTC National: A Storm of Opportunity

I came to DTC National 2010 in Washington expecting to hear about best practices in television advertising, the vital role that print still plays in the marketing mix, and the benefits of portals like WebMD.

Instead, DTC National feels more like a hybrid of ePharma, the Pharmaceutical Relationship Marketing Congress, and a NAMI convention.

Speakers have detailed the intricacies of database-focused marketing, opportunities in social media and word-of-mouth, and the need for partnerships with advocacy groups. In fact, the high winds blowing newspapers around outside of the JW Marriott here may be symbolic. 

Exit: pharma’s past. Enter: a digitally-influenced, behaviorally-focused, and surprisingly optimistic future.

Sir Martin Sorrell, the voluble chief executive of WPP, one of the world’s largest marketing services companies, kicked off the proceedings with a reflection on US healthcare reform. He raised the issue that passage of the healthcare bill has a strong upside for pharma: 30 million new consumers joining the healthcare system.

(This could explain why 66% of the DTC audience voted their “approval” of healthcare reform during an audience-response survey earlier in the day.)

However, Sorrell noted, these previously uncovered consumers will be different than those whom pharma marketers have been pursuing to date. He said they are more likely to be poorer, less educated, younger, non-white, foreign-born, and possessing lower health literacy.

“They learn by watching and listening, not by reading,” Sorrell said, first suggesting that television will continue to be a viable approach, then later noting advances in mobile technology will offer another strong vehicle.

Regardless, Sorrell said: “Healthcare marketers will have to work much harder to reach them.”

Some more highlights:

• Actor/director Joe Pantoliano provided an intimate look at his struggle with depression. Successful yet suicidal in the mid 2000s, Pantoliano (“Ralphie” from The Sopranos) got help and later created No Kidding, Me Too, an advocacy group that aims to “shine the light of Hollywood fame onto the dark corners of diseases like depression.” He echoed comments made earlier in the conference by former Vermont Gov. Howard Dean that trending diseases such as obesity may in fact stem from emotional responses to depression. Pantoliano encouraged pharma to help consumers understand the positive benefits treatments can bring, and use their media leverage to continue encouraging diagnosis and treatment
• Michael McCaughan, of Provision Policy, questioned whether the value of pharma brands in the post-recession, post-blockbuster world is in the molecule itself or in the support system created around it. Confirming what many in health education and digital healthcare have assumed, McCaughan said there will be many government dollars available for interventions that lead to better health outcomes. The catch: “You’ve got to be able to show proof”
• Dolly Judge, formerly of Pfizer and now with Hill & Knowlton, was asked what the future held for pharma. Her response: “Compliance, compliance, compliance”
• John Kamp of the Coalition for Healthcare Communication, an industry lobbying group, added that the New York City Health and Hospital Corporation is looking for ways to ensure patients adhere to prescribed treatments, as a way to control spiraling healthcare costs
• Amy Cowan, Google’s industry lead for healthcare, shared data showing higher consumer interest in search ads that carry additional risk language. Bayer’s Yaz brand piloted the new ads on Google, where click-through rates were measurably higher than for ads that ran before 14 manufacturers received FDA warning letters last spring. In some cases, the new ad formats with risk language saw click-through lifts as high as 20%, Cowan said
• Mark Miller of Epsilon shared results from a wide-ranging survey the agency conducted to shed light on consumer behaviors in the social media. The most compelling finding: Healthcare conversations are taking place on message boards in much greater volume than on any other social media venue. 49% of respondents said they used message boards to discuss health issues online; only 20% of respondents selected the next-closest venues
• The Great Recession appears to have ended in the marketing services industry. Several agency speakers, including Sorrell, remarked that revenues have recovered in 2010…although he noted downward pricing pressures will continue to hurt big-ticket items (read: print, TV) and support more nimble approaches (read: digital)

Jeff Greene
Director of Strategic Services
HealthEd

Our Effort in Haiti - A Journey of Transformation

On February 19, 2010, we, Jeanne Sica and Kate Barry, embarked on a trip that will forever change our lives and our views on humanity. We traveled to Port-au-Prince, Haiti, with the R.E.L.I.E.F. Foundation, a branch of the nonprofit organization Clean the World. For the next 5 days, we would concentrate all our energy on providing humanitarian relief for the Haitian people suffering because of the earthquake that had rocked the already impoverished country.

We arrived at the New Life Children’s Home in the early hours of Saturday and proceeded to set up our campsite and unload the 20,000 lb of supplies we had brought with us in the underbelly of our chartered Boeing 737. Not much sleep was had to prepare us for the next days of labor in the summerlike heat. We spent our daytime hours removing rubble, organizing and distributing supplies, building latrines and shower facilities, playing with the orphaned and sick children, and building temporary housing. At night, we crowded around the giant mango tree that served as the focal point of the compound, singing songs and getting to know the loving and captivating children.

To see the devastation in person was a life-altering experience. Driving through the ravaged streets of Port-au-Prince, we couldn’t help but shield our faces from the garbage-ridden city filled with feces and human decay. We were forced to wear filtered face masks and sunglasses to protect ourselves from the thick black smoke that rose from mountains of burning garbage and permeated the city’s air supply.

Somewhat of a daily routine seemed to have resumed among the Haitian people, but without much normalcy. Children will not be able to return to school for up to 3 years.  There are no jobs to be had for anyone, save for those few souls working to rebuild their homes.  The living conditions in Haiti are deplorable, due only in part as a result of the quake.  It is exemplified by poorly paved roads, lack of sewers, little electricity, limited running water, and few toilet facilities. There is no infrastructure and no active government to speak of.  The capitol building and national palace lie in rubble, as do the lives of the people around them.

We met children who had lost limbs saving loved ones, only to learn that other family members had suffered a worse fate. We met reverends, priests, and pastors whose churches were the only structures that still stood among the debris of the schools and orphanages they had spent years of their lives building. We met Miriam, the compassionate, selfless, and jovial woman responsible for founding the New Life Children’s Home and for providing our group of 120 volunteers with a safe haven closed off from the destruction of the city. She made us want to push ourselves harder—mentally, physically, and emotionally—to open our ears to children’s stories and see the heartbreak in their eyes and to make life a little easier for the people suffering so deeply.  She said both solemnly and assertively, “My biggest fear is what’s going to happen when people forget or move on. When the media leaves and we’re no longer in the news.  Haiti still needs help. And will need help for a long time.”

Monday, the last scheduled day of the trip, was time well spent with the children at the orphanage. We played basketball, pushed the children on swings, made arts and crafts, and played tag. More than anything the children just wanted to be held, hugged, and talked to. Hearts were broken as we packed up our supplies (most of which were donated to the orphanage) and left these wonderful children behind with our hearts aching and the sense that our lives would never be the same.

Because of 2 aftershocks that occurred our last day in Haiti, there was an electrical power outage on the runway at the airport, and no planes were allowed to land. The terminal had been condemned after the earthquake, so we were confined to the tarmac outside the building. This is where we spent the next 18 hours with limited sanitation facilities, no cover, and no accurate information on the possibility of our charter plane’s landing clearance. We thank our guardian angels, the United States Air Force, for watching over us and providing us with water, MREs (meals ready to eat), and cots. We arose to the sound of the captain’s voice at 5:30 AM as the sun rose, and finally, at 11 AM, as the temperature reached 90°F, our salvation arrived and we were able to return to our wonderful country.

What we want the civilized world to know, in the words of the mayor of Coral Gables in Miami, Florida (who accompanied us on this trip), is that “Haiti has not given up in the face of such odds. They wake up every day and face their challenges with the conviction that God will provide and that times will get better. I pray that I can exhibit that same positive attitude when something beyond my control goes wrong or a challenge is thrown in my path. We are back from the mission, but the impressions of Haiti and its people will remain a part of my life forever.” We share his sentiment 100%.

We would like to thank all who made this trip possible and those who we know will continue to keep Haiti and its people in their hearts and minds. We must remember that relief does not end with this one journey. This is only the beginning of what may be a 30-year struggle to rebuild their city.

To help those affected by the earthquake, please visit:

• The New Life Children’s Home
• The R.E.L.I.E.F Foundation
• Clean the World

Thank you,

Jeanne Sica & Kate Barry

HealthEd weighs in on social media and the FDA

With the FDA social media docket closing this Sunday (along with the Olympics--there's an analogy there somewhere) I wanted to share some excerpts from our new white paper, which summarizes the FDA hearings from HealthEd's point of view and provides an outlook for our clients and partners.

Before I do, a quick list of some other viewpoints on this very compelling topic:

• Ignite Health writes a POV based on their own sit-down with the FDA—just a great job by Fabio Gratton and team for championing this cause
• John Mack from Pharma Marketing News suggests FDA guidelines will resemble an industry proposal made in October 2009—an interesting piece of investigative work
• Kurt Mueller at Roska Digital discusses the WOMMA Social Media Guidelines and wonders how comfortable they will make pharma med/legal departments
• Chad Capellman in MediaPost discusses Seth Godin's Rule and its implications for pharma in social media

You probably know that at HealthEd, our business is to deeply understand patients and help healthcare companies use that knowledge to build effective solutions, improving outcomes. In our white paper, "Clearer Paths—Stronger Burdens," we recognize that one of the key themes coming out of the FDA hearings is the changing role of the patient:

An underlying theme of many presentations during the hearings was that the historical focal point of healthcare in America—the healthcare provider—appears to be shifting. In contrast, the empowered healthcare consumer is taking form, energized by the free flow of online information and perhaps a sense of frustration with the medical establishment.

Understandably, the establishment is uneasy. When Bill Drummy of Heartbeat Digital finished a thoughtful proposal for an AE reporting system for consumers, panelist Gerald Dal Pan, MD, asked: “What’s the role of the physician in all of this?” His question remains to be answered.

We identify 5 key takeways, coming out of the hearings, that could potentially impact digital communications in the pharma industry. Of course, nobody can really know today what the FDA will decide tomorrow, but I think it's a good exercise to help frame out the issues our clients are facing. One takeaway is quite clear to us: Pharma will not have to patrol sites like Sidewiki and Wikipedia.

Speakers both supportive and critical of the pharma industry said basically the same thing: The Web is too large and too diffuse for the FDA to require manufacturers to police the whole of it.

An example that speakers cited again and again is Sidewiki, a new Google tool that lets users who install it attach comments to any Web page as if the comments were part of the page’s content. When other Sidewiki users visit the page, all the comments appear … even those that are patently false.

To balance negative comments, webmasters are allowed to post a comment in the “first position” on Sidewiki for their pages—say, a Brand.com. However, Lilly’s Michele Sharp stated that if a pharma company were to do this, it would imply an endorsement of the Sidewiki content that followed. If a future user came along and posted off‐label information, the pharma company would be liable.

It’s a good point. We believe it’s highly unlikely a manufacturer would be held accountable for content posted by somebody else on a site (or an application) not influenced by the pharma company, such as Sidewiki or Wikipedia. The question that remains: Where will the FDA draw the line between “influenced” and “noninfluenced” Web sites?

Another takeaway: MedWatch will evolve. Right now, the current MedWatch site requires users to print out a complex form (you can download it here) to report an adverse event (AE). Users must then complete the form by hand and fax it back to the FDA. That may change in the not-so-distant future.

Perhaps the greatest weakness of a fax‐based MedWatch is its lack of portability—it can’t live as an interactive widget accepting submissions directly on a Brand.com, as proposed by John Mack of Pharma Marketing News. Clearly the FDA realizes MedWatch must change with technology. Consumers and healthcare providers can now subscribe to alerts via RSS feed or text message. And consumers can download a simple widget that displays links to the MedWatch Web site.

We believe the FDA will add forms technology to a new version of MedWatch, possibly by late summer 2011, enabling healthcare consumers to type AEs directly into the system. If the agency goes that far, it would be only a short additional jump to build syndication into MedWatch, enabling manufacturers to place a standard AE reporting widget on sites they own or next to sponsored content on sites such as WebMD and YouTube. To be sure, such a reporting system would add certain requirements to pharma’s Web launches and online sponsorship initiatives. But we believe that inserting a few simple lines of code would be a fair price for the increased certainty pharma companies would enjoy in knowing they were operating within guidelines.

In my opinion, the most controversial takeaway cited in our white paper concerns the reporting of AEs. In our view, the same FDA that pulled the plug on paid search ads lacking fair balance may be as literal in its interpretation of the federal code that governs AE collection.

The requirement for AE reporting is stated clearly in the Code of Federal Regulations, 21 CFR 314.80 (b). Manufacturers must report postmarketing AEs that are “obtained or otherwise received by the applicant from any source, foreign or domestic, including information derived from commercial marketing experience.” If the pharma industry wants to benefit from commercial marketing opportunities on the social Web—and 2 days of testimony made that abundantly clear to the FDA—it makes strong policy sense for pharma to cover its tracks there as well.

Should the FDA move in this direction, it would be hard for the industry to cry foul. A 2008 study on social media AEs, presented by Nielsen’s Melissa Davies, found that only 1 of 500 online healthcare messages (.002%) met the FDA’s 4 criteria for reporting: an identifiable patient, an identifiable reporter, a specific drug, and an adverse event.To be fair, this
percentage might increase if the FDA expanded its definition of “identifiable reporter” to include screen names with associated contact information. Davies also noted that the percentage would increase if she had searched for a specific brand name rather than reviewed a random sample of health postings.

Still, the number of AEs appeared manageable for manufacturers to track, and this may have been on the mind of the FDA’s Dal Pan when he asked Davies how long it had taken to review the 500 messages. She answered that Nielsen’s human analyzers can typically review 100 messages in a day. We believe the FDA will spend time doing the math using different scenarios and will ultimately recommend some base level of social media reporting for companies that choose to participate in the medium.

HealthEd and our clients will be watching and waiting to see what really emerges from all of the testimony and data presented to the FDA. In the meantime, if you would like to receive a copy of the white paper, please reply below or drop a note to [email protected] and I would be glad to add you to the list.

Jeff Greene
Director of Strategic Services
HealthEd