A Pioneer Passes

Martin Delaney, HIV/AIDS Activist, Taught Us Much About Communication and Finding Common Ground

Martin Delaney was the founder of Project Inform, the San Francisco-based organization dedicated to providing “information, inspiration and advocacy for people living with HIV/AIDS.” Marty threw himself into this public health crisis because he didn’t want to sit on the sidelines while his friends were dying. (He was not HIV-positive; it was liver cancer that killed him at age 63.) His organization and others, like ACT UP and GMHC, changed the way we viewed HIV/AIDS and much more.

We met not too long after Project Inform was founded. I was in the Public Policy and Communications department at Hoffmann-La Roche and he was on the other side of the table. With anti-retroviral drugs in the pipeline, seeing the emerging influence of AIDS activist groups (and the break-ins and boycotts affecting Burroughs Wellcome, manufacturer of Retrovir®/AZT), and imagining the potential benefits of hearing the patients’ point of view, I pressed for engagement. I remember quoting Lincoln to my management: “As our case is new, so we must think anew, and act anew.”

There was no playbook. Pharmaceutical companies didn’t interact with consumers. The Company would inform the “learned intermediary” – the physician – and he or she would communicate with the patient. Marty helped to bury that dogma and enhanced the dialogue between all of the key stakeholders. The industry and the FDA grappled for years over ways to expedite the review and approval of drugs for serious or life-threatening diseases. Marty helped to change policy, and many thousands of patients were able to gain early access and benefit from new therapies. Information about new treatments, managing side effects, insurance coverage and the availability of clinical trials was largely uncoordinated. Marty helped to launch a well-regarded newsletter, town hall-style meetings, and an AIDS treatment hotline.

Interacting with Marty helped me to learn a key lesson: the importance of finding common ground. The world was changing. The normal course of business – the normal course of life – was disrupted. We, the industry, and the patient community approached our goals from different directions using different strategies and tactics but much of what we all sought was the same. Our constituency was their constituency and everyone wanted new medications on the market as soon as possible. The two “sides" worked jointly to expand drug access, enroll patients into clinical trials, renew R&D tax credits, and reauthorize the Orphan Drug Act.

It wasn’t always pretty. There were bumps in the road but at least we were on the road together, held there by mutual interest and mutual respect.

His lessons went beyond the HIV/AIDS community. I remember attending a meeting at PhRMA (then known as PMA) headquarters in Washington, DC. Expecting to see representatives from the AIDS advocacy organizations, the room included members of some just formed cancer patient groups. They were brought along to learn the ways of the pioneering AIDS organizations. It was brilliant.

Marty was dogged, built and expanded relationships, leveraged his network and communicated in new ways with a firm but calm approach. His contributions were many and should be remembered.

Great Expectations

Our Standards For Scientists and Physicians

Should we have higher expectations of scientists and physicians when it comes to admitting mistakes? What about ethics? At first blush, most of us would say, “Of course.” It’s about scientific objectivity. It’s about life and death. True. But there is a more complicated story here.

Some recent articles touch on the expectations the public has of researchers in the sciences. Sharon Begley of Newsweek (“On Second Thought…,” January 12, 2009) expressed some surprise that scientists are no more likely to change their minds than ordinary citizens when confronted with new facts. She writes that “based on a dispassionate evaluation of empirical evidence, they are expected to willingly, even eagerly, abandon cherished beliefs when new evidence undercuts them.”

Well, I’m disappointed more than shocked. The problem here is the word “dispassionate.” Who ever said scientists don’t have passion, or points of view or even biases? In other words, scientists might be highly educated and engage in laudable pursuits but they are human in every respect. And, being human, scientists can get locked into positions in the face of what others might term overwhelming evidence. As I wrote in Do the Facts Matter?, "If the facts don’t fit the person’s worldview or “frame,” as the cognitive linguist George Lakoff terms it, the facts bounce off like bullets shot at Superman’s chest.” It doesn’t matter who you’re debating, all the data get deflected while you get blue in the face. The bottom line is that insight alone does not change one’s mind. It’s the desire to change that propels us in a new direction.

Indeed, it’s passion that has led some researchers to involve their own children in their investigations. However, this passion – while responsible for pulling us forward and driving us to explore ever deeper – may cloud our judgment and create some unintended problems. In “Test Subjects Who Call the Scientist Mom or Dad,” Pam Belluck of The New York Times (January 18, 2009) interviewed Robert M. Nelson, director of the Center for Research Integrity at Children’s Hospital of Philadelphia who said, “The role of the parent is to protect the child. Once that parent becomes an investigator, it sets up an immediate potential conflict of interest. And it potentially takes the parent-child relationship and distorts it in ways that are unpredictable.”

The story also mentions Karen Dobkins, a UCSD psychology professor, who used her infant twins in a cognitive research study, who said, “it was kind of painful, because one of my twin boys basically played the game really well, but my other son, we couldn’t even use his data.” She said that “made me worry that he had autism.” Her worries proved unfounded. Still, she said, “I took only the good data and copied it and put it in both of their baby books.” (Of course, now those kids will know the truth when they’re older because their mother spilled the beans to The New York Times!) And there’s Pawan Sinha, a neuroscience professor at the Massachusetts Institute of Technology, who admitted that his wife (also a researcher) was “quite opposed to this idea of experimentation” on their son. He went on to say that “it had to be done surreptitiously, whenever she would go out or when I would take him out…”

What does all of this communicate to the general public? In addition to the potential warping of the parent-child relationship, our scientists are fudging their baby books and lying to their wives. It’s small potatoes, right? Some semi-innocent lapses? Wrong. In my head, at least, the alarm bells are going off. Where does one draw the line? If scientists are less than honest in these dealings, wouldn’t the public begin to doubt their credibility on the bigger issues? Would they change their results in a lab book, in a publication, in testimony? And, the matter-of-fact way these scientists discuss and rationalize their exploits sends yet another damaging signal.

The fact is that higher standards do exist for scientists and researchers. They have an imperative to protect the safety and rights of human subjects. They are compelled to disclose conflicts of interest and monetary connections that might create bias or the appearance of bias. They must obtain the approval of Institutional Review Boards who set and maintain ethical standards for research locally but must also uphold State and Federal statutes.

Yet, when it comes to maintaining integrity, there should be no differences between scientists and the general public. Baseball player or biologist, novelist or neurosurgeon, we should all adhere to the same standards in truth and honesty.

NEJM Makes It Official

The Role of Communications in Public Health
Communicating. It’s the first word on the first page in the first article of the first issue (of 2009) in what many would consider first among the medical journals, the New England Journal of Medicine. My first utterance upon reading this was, simply, “Wow.”

In “Communicating Medical News – Pitfalls of Health Care Journalism,” Susan Dentzer, editor-in-chief of Health Affairs, writes “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.” This is the lead that the NEJM chose to use for its first issue of the year. Not healthcare reform, not science policy, not clinical strategy. Communicating.

The article is a terrific platform to tell (or remind) its learned readership that they have a critical role in helping journalists get their stories right. As Ms. Dentzer points out, the consequences can be dire. With inaccurate details or story angles developed for shock value, patients can be spooked out of taking their medication or not even seek medical attention.

And, it’s not good for business either. Innovators, entrepreneurs, investors and diagnostic, device and biopharmaceutical companies can all suffer from the herds prodded on by cowboy journalism. In the latest issue of Health Affairs (28, no. 1), it was reported that U.S. health spending in 2007 grew at the lowest rate in nine years, mainly because of slowing prescription drug sales. Why? The availability of generic alternatives was a major factor. But Federal health officials also said that the trend in drug spending was influenced by increased safety concerns.

The problem of health and science reporting is further exacerbated, Ms. Dentzer said, by the many journalists who “consider themselves poorly trained to understand medical studies and statistics.” She laments also the lack of time, comprehensiveness and context afforded healthcare stories.

OK, so this isn’t exactly news to us in the communications/public relations field. Some journalists are ill-prepared and misinterpret the facts. Some news outlets are chopping their staffs and, thus, preventing opportunities for deeper investigation. And, some scientists and clinicians can’t form a coherent sentence.

Beyond the call for better training of health journalists and asking the medical community to provide wider balance, however, we need a change of mind-set. Journalists, news outlets, content experts and communications professionals all share a goal – get important, compelling information into the hands – the minds – of the right people. Let’s learn from each other. Let’s communicate. The bottom line is that we need each other if we are to inform and motivate and create positive changes in behavior. Though there’s a long way to go, having the role of communications in public health elevated in the NEJM is a great way to start 2009.

Heading in the Wrong Direction

We Need More, Not Less, Health and Science Reporting

I’ll add my outrage to that expressed in a recent letter from the Council for the Advancement of Science Writing, National Association of the Science Writers, Society of Environmental Journalists and World Federation of Science Journalists to Jim Walton, President, CNN Worldwide and Jon Klein, President, CNN/US. Just as the in-coming Obama administration signaled its commitment to bolster science and technology investment and education, CNN sacked some of its most experienced science journalists and producers.

CNN’s timing could not be worse. We are in desperate need of another science boom and greater public support will surely help propel the effort forward. Our healthcare, our environment, our energy needs and our economy all depend on it. Thirty years ago, the US ranked third among developed nations in the proportion of college students receiving degrees in science or engineering. Now, we stand in 17th place. And, as I wrote in Personalized Promise, only about 10 percent of the US population knows what a molecule is, about 30 percent could define DNA and, shockingly, about half know that it takes the earth one year to orbit the sun.

So, we need more interest and understanding not less. We need more people informed, more involved, more inspired. And, we need more knowledgeable professionals sifting through the growing mass of information to communicate the progress and the failures, and differentiate the facts and evidence from the frauds and junk science. We need more, not fewer, players in the effort to enhance our science literacy.

And, it’s not just straight news reporting that we need. Knowledgeable and experienced reporters bring us perspective. It’s too bad that in 2009 CNN will leave it up to others to help us celebrate the 400th anniversary of Galileo’s first telescope and ask the questions about what new cosmic discoveries await us. Or, the 300th anniversary of Abraham Darby’s use of coke that revolutionized iron smelting and investigate what new alloys might build tomorrow’s structures. Or, the 200th anniversary of the first geologic survey in the US and its implications on the environment, mining and land management. Or, the 100th anniversary of Wilhelm Johannsen’s coining of the terms gene, genotype and phenotype that launched the language of genetics.

CNN, please reconsider. As we leave the era of anti-intellectualism behind, we should see an ever-increasing public interest in health and science, more progress and discoveries to report, and new or strengthened companies to buy advertising time on your networks.