Angelina Jolie's Fearless but Flawed Message

This article also appears in Medical Marketing & Media.

 A good chunk of humanity is talking about Angelina Jolie’s double mastectomy today. She penned a remarkable Op-Ed in The New York Times about her decision to have preventive surgery and breast reconstruction following the results of a genetic test. The variant of her BRCA1 gene gives her an 87% risk of breast cancer and 50% risk of ovarian cancer. (Clearly, she’ll need to confront the latter issue at some point and I wish her the very best.)

I join the millions who are happy to read that Ms. Jolie is making a fast recovery. Her story is another reminder of the need for education and outreach, and brave decisions. And, she points out the crucial issues of access, cost and preventive health care (though the discussion is one much broader than breast cancer). As sad and terrifying as her experience must be, however, she's fortunate to have deep emotional and financial support. It’s a stark reminder of health care haves and have-nots.

Unfortunately, her nod to "wonderful holistic doctors working on alternatives" is less helpful. Steve Jobs was famously regretful of his choice to pursue alternative therapies. He wished - too late - that "conventional" (science/evidence-based) therapies had started earlier. Instead, he tried dietary supplements, juices and acupuncture for nine months while his cancer spread. I’d hate to see Ms. Jolie provide a platform to physicians like Christiane Northrup, who has used Tarot cards to diagnose illness, or celebrities like Suzanne Somers, who apply, ingest and inject unapproved products in an attempt to stay young, and Jenny McCarthy, who uses the very unfortunate story of her son to create fear and confusion around vaccines.

Of course, people die even though they had the best of what science could offer. Cancer is a terrible, complicated array of diseases. And it's true that some people get better while on alternative therapies. Is there something to it? Quite possibly. We know that many modern medicines are derived from natural substances. But the cures you often hear about could be the result of other factors including poor initial diagnoses.

When it comes to managing one’s health or the health of one’s family, most people don’t have enough knowledge to evaluate a medical product claim or even formulate the right questions to ask a health care provider. This all makes the public an easy target for purveyors of alternative medicines and bogus devices.

So, while some push for greater access to health care, a parallel effort must be made to fund research and education. Dropping information – even crucial or compelling data – onto the heads of an unprepared public, or expecting a response to another “call to action,” is unproductive and unrealistic. We need a massive, sustained effort to enhance health and science literacy.

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Gaining Higher Ground by First Finding the Low

Treating the Cause, Not the Symptoms, of Pharmaceutical Industry Reputation

When confronted with a problem or an issue, we look for the root cause, the scene of the crime, Patient Zero. In the case of healthcare industry reputation, however, it seems that executives and consultants have a hard time finding that lowest common denominator. Though the pharmaceutical industry has suffered from behavioral, communication and performance missteps that have lowered reputation, it is low health literacy among consumers and the decline of science journalism that are fundamental to this problem.

Many millions have been spent on advertising campaigns to communicate the value of medicines and the cost of product R&D. Attempts have been made to showcase the role of industry research in modern medical breakthroughs. Disease awareness campaigns have been launched to help people better respond to symptomatic cues and get help. A conciliatory face has been unmasked as concessions on discounts and rebates were recently made during negotiations on healthcare reform.

It does not appear, however, that the “kitchen sink” approach to corporate reputation management is working. According to the yearly Harris poll of public attitudes toward different industry sectors, pharmaceutical companies have roughly the same score as cable companies and automobile manufacturers. The “good job minus bad job” number was nine (with supermarkets leading at 86 and tobacco trailing at -32).¹ Last year the number was 15 (with supermarkets at 84 and tobacco companies at -43).²

In the annual Harris Interactive Reputation Quotient survey of the 60 most visible companies, however, the pharmaceutical sector posted its highest reputation scores in five years – up to 31 percent in 2008 from 26 percent in 2007.³ The optimist might say that the upswing in public sentiment is proof that the varied messages and good works of the industry are finally penetrating the gloom. Yet, the cynic might say that it’s all relative; the self-inflicted wounds of other industries make pharmaceuticals look good by comparison. For example, the financial services fell into the reputation cellar with the tobacco industry, both at 11 percent. The auto industry suffered the largest decline (22 percent) in the survey's history. And, remember, 31 percent good for pharma means 69 percent not good.

Wherever the numbers are, they need to be higher. Bolstering industry reputation means generating more trust among the stakeholders. We can go a long way in enhancing the relationship with key stakeholders by delivering on healthcare promises. That is, better outcomes for patients. Generating better outcomes is heavily dependent on appropriate utilization which, in turn, relies on better health judgment.

Better health judgment starts with consumers and the need for them to be more knowledgeable about healthcare. Dropping information – even crucial or compelling data – onto the heads of an unprepared public, or expecting a response to another “call to action,” is unproductive and unrealistic.

In response to these issues and obstacles, the healthcare industry should get behind a massive, sustained effort to enhance health and science literacy.

Of course, having a more knowledgeable public will not guarantee an enhanced corporate reputation. It must be earned. The self-inflicted wounds – the reputation-killing missteps and misdeeds – need to stop.

But, putting that critical issue aside, without an ability to evaluate the facts and evidence, the important health and science issues of the day – stem cells, healthcare reform, research funding, vaccine programs – will continue to be misconstrued and remain political footballs.

When it comes to managing one’s health or the health of one’s family, most people don’t have enough knowledge to evaluate a medical product claim or even formulate the right questions to ask a healthcare provider. This all makes the public an easy target for purveyors of alternative medicines and bogus devices.

This growing problem drew widespread attention when Newsweek put Oprah Winfrey on its cover with the title, “Crazy Talk: Oprah, Wacky Cures & You”.⁴ To be sure, Oprah has made tremendous contributions to her viewers and to noble causes across the world. But when she give a platform to physicians like Christiane Northrup who has used Tarot cards to diagnose illness, or celebrities like Suzanne Somers who apply, ingest and inject unapproved products in an attempt to stay young, viewers see an endorsement of potentially dangerous treatments and interventions.

Jenny McCarthy, another guest of the show, has used the very unfortunate story of her son to create fear and confusion around vaccines. Indeed, compared to parents of vaccinated children in the U.S., significantly more parents of unvaccinated children believe that vaccine efficacy and safety are low (58% vs. 17%, 60% vs. 15%). Also, significantly more parents of unvaccinated children believe their kids have a low susceptibility to diseases (58% vs. 15%).⁵

Following the Newsweek article and sharp condemnation by the mainstream medical community, Oprah released a statement saying “I trust viewers, and know that they are smart and discerning enough to seek out medical opinions to determine what may be best…” Trust isn’t the issue, however. It’s whether or not viewers have the ability to differentiate real science from junk science, medical myths from medical facts.

This inability to filter information holds true for the fastest growing sector of media – new or social media. Some commentators have heralded the arrival of “citizen journalists” to fill the void left by the dwindling professional corps. Sorry. Although bloggers help to generate much needed discussion, citizen journalism does not equal journalism. And, with the “viral” nature of the web, every anecdote, half-truth or falsehood has the potential to be perceived as fact, as real news.

Indeed, we need more pros to sift a growing mass of information. Professional health and science journalists must help to communicate the progress and the failures, and to differentiate the facts and evidence from the frauds and junk science. Unfortunately, we’ve seen surveys confirm what we already know about the state of health and science journalism over the past few months. It’s a shrinking, wounded profession. We know the symptoms – they’ve been well documented. Like the global economy, journalism needs a recovery plan.

A recent editorial in the journal Nature recognized that “scientists can do little to stop this bloodletting” though they can at least “help ensure that reporting about science continues to be both informed and accurate.”⁶ In addition, it was suggested that “the scientific community should work with journalism schools and professional societies to ensure that journalism programmes include some grounding on what science is and how the process of experiment, review and publication actually works.”

In another piece in the same issue, Toby Murcott wrote that science journalists must be more engaged – more a part of the action. They can’t simply massage a press release for their particular readership. He compares science journalism to the clergy, “taking information from a source of authority” and translating it for the congregation.⁷ He contrasts this with political journalists who, with a knowledge base on par with those who they monitor and interview, engage in an active exchange.

Physicians have a role in this, too. With inaccurate details or story angles developed for shock value, patients can be spooked out of taking their medications or seeking medical attention. Indeed, “communicating” was the first word on the first page in the first article of the first issue (of 2009) of the New England Journal of Medicine.⁸ Susan Dentzer wrote that “Whether they realize it or not, journalists reporting on health care developments deliver public health messages that can influence the behavior of clinicians and patients.” Unfortunately, many journalists “consider themselves poorly trained to understand medical studies and statistics.”

Yes, the quality of reporting and the training of journalists must be bolstered. A survey released this year by the Association of Health Care Journalists and the Kaiser Family Foundation reported that 43 percent of respondents said training opportunities had declined.⁹

But addressing this one facet is not enough. Journalism is a business and, thus, a business case needs to be made in order to save (and expand) health and science journalism. The bottom line is that demand is low. Certainly, there’s no dearth of interesting material. It’s just a simple truth that a dreadfully large portion of the audience lacks the background and understanding to feel engaged in the subject areas. In a survey of more than 19,000 U.S. adults, only 11 percent where found to be "proficient" in their health literacy.¹⁰ This is where the recovery must begin.

The stakes are high and not just for the employment of journalists. Remember the first trial involving the anti-inflammatory drug Vioxx® in 2005? The jury awarded $253 million to the plaintiff. Why? The science went right over the heads of the jury. In an interview with The Wall Street Journal a juror said, “We didn’t know what the heck they were talking about.”¹¹ Jon D. Miller, director, Center for Biomedical Communications, Northwestern University Medical School told The New York Times that “People’s inability to understand basic scientific concepts undermines their ability to take part in the democratic process.”¹²

Industry support for a long-term effort targeted at raising health and science literacy could lead to an increased public understanding and appetite for health and science information, news outlets being repopulated with professional journalists to help carry information forward, and a higher and wider industry reputation. Let’s spread intellectual curiosity, and use the marketing and partnering expertise of the industry to achieve these essential goals.

1. The Harris Poll^®, August 18, 2009.
2. The Harris Poll^®, August 7, 2008.
3. Harris Interactive Reputation Quotient^TM (RQ) survey, June 23, 2008.
4. Kosova, Weston and Wingert, Pat. Newsweek, June 8, 2009, pp. 54-62.
5. Omer, Saad B. et al. Vaccine Refusal, Mandatory Immunization, and the Risks of Vaccine-Preventable Diseases, New England Journal of Medicine 2009, vol. 360, no.19, pp. 1981-1988.
6. Nature, vol. 459, no. 7250, p. 1033.
7. Murcott, Toby. Science Journalism: Toppling the Priesthood, Nature, vol. 459, no. 7250, pp. 1054, 1055.
8. Dentzer, Susan. Communicating Medical News – Pitfalls of Health Care Journalism, New England Journal of Medicine, 2009, vol. 360 no. 15, pp.1477-1479.
9. Kaiser Family Foundation, The State of Health Journalism in the U.S., publication #7869, March 2009.
10. National Center for Education Statistics, The Health Literacy of America’s Adults, publication #2006483, September 2006.
11. The Wall Street Journal, p. A1, August 22, 2005.
12. The New York Times, p. F3, August 30, 2005.

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A Healthcare Answer For Some But Not All

The Internet Is Another Health Disparity That Must Be Addressed If you ask your friends, relatives and colleagues if they’ve used the Internet to find healthcare information, I’d be willing to bet the answer would be yes. There’s no question that the Internet is an ever more important healthcare tool. The ability to capture and consolidate information into electronic medical records; search and share health and wellness resources, and enhance communications between professionals and patients are among the many benefits of the web. It’s OK to cheer but just not too loudly.

The problem is that our friends, relatives and colleagues aren’t everyone – not by a long shot. According to Neilsen Online, there’s a whopping 277,636,000 Internet users in the U.S. The flip side of this seemingly good news is that it leaves about 30 million Americans disconnected from the world wide web and, thus, unable to access important healthcare tools and information.

The web is no panacea, of course. You may have read some of my previous articles where I pointed out the problems of web-based healthcare information. Because there’s so much junk science reported and repeated in cyberspace, it can be a case of information doing more harm than good. Still, there’s a growing list of important applications that will not be available to all who could benefit from them.

Take Keas, for example, the new company that boasts Google Health and Microsoft HealthVault as partners. Keas seeks to marry personal data and health information to produce personalized health plans for individuals. Delivered right to your desktop or smart phone might be diet and exercise advice, an explanation of lab results, different treatment options or reminders to take a medication.

During the healthcare reform debates, we heard repeatedly that a key to lowering costs is to have a healthier nation and that this goal will only be possible if individuals take more responsibility for their health. While we could achieve a lot if plain old common sense was applied more often, tools like those being developed by Keas could play an important role in both learning about and managing one’s health.

If experts are telling us that things like electronic medical records, on-line health information and personalized health plans are important to healthcare reform efforts and our own personal well being then we need to be thinking about two kinds of health disparities: insurance coverage and Internet access. Creative, cost-effective ways to distribute computers and expand broadband access must take on new urgency. The benefits would be manifold.

And, access should include more than the ability to go on-line. Access is meaningless if one can’t interpret what one has found. Even for those with Internet connections, there’s an enormous deficit in health literacy that threatens the public health, such as sensationalized claims that lead people to take potentially dangerous alternative medicines or parents to refuse vaccinations for their children other than for legitimate medical reasons. If there’s any hope in increasing coverage and quality while containing (or even lowering) costs, more attention must be placed on expanding access to and understanding of healthcare information.
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A Chink in Oprah's Armor

Is She Putting Your Health At Risk?

The list of Oprah Winfrey's accomplishments is long. The value of what she brings to her viewers and readers, and to communities worldwide is enormous. Yet, as Newsweek tells it in their June 8 cover story, "Crazy Talk: Oprah, Wacky Cures & You," there is danger in her embrace of alternative therapies -- danger to the public health and danger to her reputation.

The article discusses several cases where both lay and professional health "experts" have dispensed potentially dangerous advice, including the use of Tarot cards to diagnose illnesses, refusal of vaccinations, and self-medicating with hormones, herbal supplements and mega-doses of vitamins. Moreover, Oprah herself has spoken positively about a number of these "treatments" and "cures," providing an endorsement of gigantic proportions.

In response to the article and the condemnation of mainstream medicine, Oprah released a statement saying, "For 23 years, my show has presented thousands of topics that reflect the human experience, including doctors' advice and personal health stories that have prompted conversations between our audience members and healthcare providers. I trust viewers, and know that they are smart and discerning enough to seek out medical opinions to determine what may be best for them."

Let's break this down:

1. Doctors' advice. Yes, Oprah has welcomed quite a few esteemed medical experts who have clearly and accurately described a wide variety of medical conditions and potential interventions. Some physicians and their advice are more equal than others, however. There is a cadre of highly credentialed individuals who have repudiated peer-reviewed data in favor of so-called natural remedies. Dr. R.W. Donnell, the physician blogger, calls them “quackademics.” The article highlighted Christaine Northrup, M.D. who said that, "in many women, thyroid dysfunction develops because of an energy blockage in the throat region, the result of a lifetime of 'swallowing' words one is aching to say." She also said women should consider iodine supplements (which, in reality, will make hypothyroidism worse). Oprah calls Northrup's book, The Wisdom of Menopause, her "Bible."

2. Personal health stories. We all know that information conveyed in a personal, emotional way connects with audiences better than just some dry facts. The flip side of this is that many times the information is less fact than it is anecdote or wishful thinking. Suzanne Somers, for example, speaks to Oprah's audience of her own quest to look younger and double her lifespan with a regimen of non-FDA approved bioidentical hormones and 60 other supplements, which she ingests, applies and injects. Though a personal story, Somers wants to be viewed as an expert. "I have spent thousands of hours on this. I've written 18 books. I know my stuff," she told Newsweek. Oprah said "every woman should read" Somers' books.

3. Trusting viewers. In my view, the word "trust" is just not applicable here. The issue is whether or not her viewers are a) exposed to other sources of information and b) able to differentiate real science from junk science. This is not an issue of smarts, either. The point is that, while there are plenty of intelligent Americans, the vast majority have low health literacy. In a survey of more than 19,000 adults (age 16 and up) conducted a few years ago by the National Center for Education Statistics, only 11% where found to be "proficient" in their health literacy. The majority, 53%, where in the "intermediate range," while 22% had "basic" and 14% "below basic" health literacy. Without proficiency, it is exceedingly difficult to integrate, synthesize and analyze the sometimes complex information that one is expected to tackle.

Is this Oprah's "jump the shark" moment? Her ratings are down as is readership in her magazine, O. But I hope the answer is no. Rather than defend the past and continue on this course, Oprah should seize the opportunity to do better in the future. Please Oprah, ensure that all sides of the medical argument are heard. Leverage your reach and good intentions by being a champion of health and science literacy.

Swine Flu's Teachable Moment

An Opportunity for Public Health and Vaccine Manufacturers

It was disturbing to read about a growing public health threat in "Vaccine Refusal, Mandatory Immunization, and the Risks of Vaccine-Preventable Diseases" in this week's New England Journal of Medicine (Omer et al.). The bottom line is that there is a critical need for new education and policy efforts to protect children (sometimes from their own parents) and the general public.

Here's an example of some of the bad news: In the case of measles, it's been estimated that more than two million cases occurred each year in the U.S. before a vaccine was available. In a triumph of science and medicine, the number of cases dropped to a mean of 62 per year between 2000 and 2007. In the first four months of 2008, however, 64 cases were reported with 63 of those occurring in children who were not vaccinated. Why?

• Past success. With a number of diseases nearly wiped out by vaccines, it seems as though our memories have been wiped out as well. As time marches on, many have forgotten the potential severity of vaccine-preventable diseases. Using the measles example, some cases can cause pneumonia, seizures, meningitis or even death.


• Alternative medicine and junk science. Of course, "western medicine" does not have all the answers. But it's been reported that parents of unvaccinated children "were more likely than parents of vaccinated children both to have providers who offered complementary or alternative health care and to obtain information from the Internet and groups opposed to aspects of immunization."


• Ease of opting out. Although the constitutionality of mandatory immunizations has been upheld, individual states have the ability to set the bar and allow exemptions based on personal or religious beliefs. In another unfortunate example, "the mean annual incidence of pertussis was almost twice as high in states with administrative procedures that made it easy to obtain exemptions as in states that made it more difficult." It was reported also that children with exemptions were 35 times more likely to contract measles.


• Denial. Compared to parents of vaccinated children, significantly more parents of unvaccinated children believed their kids had a low susceptibility to diseases (58% vs. 15%) and that the severity of disease was low (51% vs. 18%).


• Lack of trust. Again, compared to parents of vaccinated children, significantly more parents of unvaccinated children believed that vaccine efficacy and safety were low (58% vs. 17%, 60% vs. 15%).

Although the hearts of parents who withhold vaccinations from their children for non-medical reasons might be in the right place, their brains are not. In the "rugged individualism" that many Americans use to define themselves, there is a consequence of putting others in harm's way. Those who are unvaccinated put their communities at a higher risk of disease outbreak.

Now, there's a race to develop another vaccine -- this one against the swine (H1N1) flu. Although no one wants a new disease to contend with, there may be a silver lining -- a chance to reengage the public on the importance of immunizations. No doubt there will be an educational push when the vaccine is available. But at the same time, a campaign should be tied-in to reverse the dangerous growth of vaccination exemptions.

No vaccine is risk-free and not every mind can be changed. Still, the CDC (with their reach and clout), vaccine manufacturers (who can gain sales and reputation) and health care providers (who are a trusted source and carry influence on family health care decisions) should join forces to develop a new dialogue with the public. And let's sustain the discussion, let's put the science and evidence in perspective, and let's build some trust.