EDITORIAL

Volume 4, Number 2
April-June 1999

Editor’s Note:  A similar version of this editorial was given as a keynote address for the National Cancer Institute on December 10, 1998.  While this was in press, the speech in its entirety was published in Vital Speeches of the Day, February 15, 1999, 65(9), 267-269.

First,  I would like to thank Barbara Rimer for the introduction and vision of what we can accomplish at this two-day meeting.  According to my invitation, the charge for the keynote speaker is to move us beyond the title to action.  I thought I would begin today with a little history.  Many of you know the  famous 17th Century debate between science and the church.  In 1633, Galileo stood trial at the Inquisition headquarters in Rome as he was charged with ‘vehement suspicion of heresy’ for his belief that the sun, not the earth was the center of the Universe.
 
 And now, in the final years of the 20th Century,  we are living in a new communication age with an international and ubiquitous superhighway -the Internet - whose potential we only recently have tapped into.  While the NCI has adapted to the changing world creating a Cancer Information Service over 20 years ago, the cancer challenge remains as over one in three Americans will die of cancer in the next century if the current predictions are true. The theme of this meeting --CANCER RISK COMMUNICATION -- what we know and what we need to learn...- is a salubrious effort by NCI  to advance the potential of communication making a difference.

It is precisely the opportunity to make a difference with communication that has intrigued me as a physician to focus on how we communicate health and risk issues.  Today, as a physician with a background in communication and public policy, my principal ‘practice’ is at the Academy for Educational Development here in Washington. Our patients are people throughout the world, with audiences in the US and over 80 countries. Our service is not with a scalpel, but the modern day therapeutic intervention --ethical science-based communication.  Furthermore, I serve as Editor of the peer-reviewed Journal  of Health Communication and on the faculty at Tufts University School of Medicine, which provide a birds-eye view into the
developments of health communication for the next century.
 
My presentation  today focuses on the potential of risk communication strategies, ethically employed to advance our ability to prevent cancer and promote healthy decision-making.

As most of us know, there have been numerous reports, commissions and studies that have focused on risk.  Why should we be confused?  After all we can easily explain risk for everyone.  Let’s consider the simple terms related to risk: risk assessment, relative risk, risk management, risk control, risk characterization, attributable risk, low risk, high risk, no risk, lifetime risk, acceptable risk, risk control, risk surveillance, risk factor, risk reduction, and even risk communication.  [At least we are not trying to explain outbreak, that can be defined by an epidemiologist as just one case.]

Regardless of what I  say today, what we share and determine collectively over the next two days, it is only a beginning. The answer lies beyond simple recommendations at these meetings. While I have been fortunate enough to develop and present “Maxims for Effective Communication on Health and Risk Issues” that were adopted at the World Health Organization earlier this year, without application and action by people such as ourselves here today, they are just another printed report.

How Do We Accomplish Our Task?

The remedy begins with each of us to match the millennial opportunity with effective and ethical leadership that matches  our scientific prowess. We have an opportunity to move beyond the medical model.  Cancer risk communication will not be solved with a single vaccine.
 
Consider it was only fifty years ago that the first randomized clinical trial was conducted.  At the same time, communication began as a doctoral level discipline.  What have we learned in Cancer and Communication research over the last 50 years?

Most of the communication research has focused on the importance of the source, message and channel and confirmed certain “truths.”  In short, we know we need multi-channeled communication that is open, often and ongoing to reach the intended target audiences effectively.  We also recall the writings of the ancient Greeks, that the ethos, integrity, and credibility of the source of communication is the most important factor in building trust, relationships and success of the communication act.  Additionally, modern-day communication research systematized our knowledge of message reach and frequency, message impact, message lifespan and the potential value of segmentation.

Regarding cancer, we have increased knowledge since the randomized clinical trial was initiated in medicine.   While we know what cancer is and how it spreads, the principal treatments remain -- surgery, chemotherapy and radiation.  Yet, there is promise, as early progress in chemoprevention, earlier molecular detection, cancer vaccines, anti-angiogenesis, oncolytic viruses, and monoclonal antibodies offer new hope on the horizon.

Despite what we ‘know’ about communication and cancer, there are still common misconceptions amongst the American public.  Most believe:

• A mouse is a little (hu)man
• ANY risk that increases one’s chance of death or disease is unacceptable
• The plural form of an anecdote is evidence

 Today, the challenge remains to overcome such beliefs and myths.  We still need to learn more with basic and applied communication and behavioral research.   I am proposing a new disease category related to cancer risk; we could consider three major disease categorizations:

• communicable disease (i.e. human papilloma virus linked to cervical cancer)
• non-communicable disease (genetic predisposition, carcinogen exposure, etc.) AND
• communicated disease

In a world where communication has replaced armies as a source of power, communicated diseases are the greatest current disaster for humankind.  Communicated diseases are those that are promulgated not by a microscopic infectious agent (whether a prion, virus, bacterium or other undiscovered microbe), involuntary environmental factors (e.g. cosmic radiation) or genetic predisposition. Communicated diseases are those advanced through a variety of channels and vehicles such as the news and entertainment media, advertising, or the new media to affect the culture, society and our individual health behavior.  There are some controversial communicated diseases:  such as illness due to breast implants or electromagnetic field cancers. Regardless of how it is characterized, the largest communicated disease is tobacco.

Tobacco counts for over 3 million deaths per year worldwide: 420,000 deaths each year in the USA, 175,000 of them are due to lung cancer.  The overall annual medical cost for tobacco in the USA is $50 billion.

Tobacco abuse continues despite the evidence. It is backed by a multi-billion dollar industry that develops new markets and marketing schemes through communication strategies that condone cigarette smoking. In the past twenty years, worldwide consumption of tobacco has increased by 75%.   While communicated diseases have a foot-hold in society, a multi-tiered anti-tobacco approach with strategic communication and policy change will require strength and stamina.

We need to combat all three disease categories with 21st Century ethical science-based communication.

Four predominant strategies have emerged within modern-day communication. Each addresses an overall goal of health communication as the ethical employment of persuasive means for effective health decision-making. In short, it means getting the right message to the right people, at the right time, with the intended effect. The strategies are public relations, advocacy, negotiation and social marketing.

Public relations was coined earlier this century, and is a technique for changing the culture or the environment for individual decision making. We could use public relations strategies to advance discussion of the need to understand risk as it relates to cancer. Such a public literacy on cancer risk could provide a necessary basis for making informed decision- making, understanding of bias and levels of evidence, associations between risk factors and disease, statistics, probabilities, and critical thinking skills. Public relations strategies can be used not to tell the public what to think, but what to think about.   The 21st Century will require a new way of thinking.  We may have to look beyond controlling ‘risk factors,’  to other ways of proactive prevention.

The second strategy, advocacy, may be considered as old as the ancient Greeks writings on politics and rhetoric.  It targets a change in the regulatory environment, including the workplace or legislative arena. Utilizing media, policy and social mechanisms in the effort to elicit change, advocacy activates the ever-increasing channels of communication, targeting niche groups, opinion leaders and champions - with specific appeals to achieve the desired result. Today, social and media advocacy strive to influence the political and media agenda to enact policy change at a variety of levels. The emphasis on research on certain diseases and treatment regimens “such as environmental toxins and  breast cancer,” were due to advocates efforts.  The new technologies give us an opportunity to share information and link researchers and publics who share similar interests but have geographic limitations to create new communities and elicit change.

Third, the ideals of negotiation are built upon the fact that we all do not make decisions independently, but build relationships and common ground in procurement of our survival.  As a field of study, negotiation was popularized with French diplomacy training in the early 18th Century. Today, negotiation’s aim is to change the nature of the involvement of  people. In the health setting, such as the program at Dartmouth Medical School, it is often termed Shared Decision Making, involving the patient in the disease treatment process. In other cases it can be influencing the decision maker responsible for delivering health messages.

The desired result of negotiation is that people more effectively participate. in decisions -- working with community groups, public-private partnerships and other interested parties.  Such approaches at the individual level can help people make appropriate decisions on choices of drinking tap water, choosing treatment regimens for prostate and breast cancer, and enabling action to prevent disease and cancer.

When such a strategy involves getting a health message embedded in the entertainment media, it is often called an entertainment-education strategy or collaborative consultation.  For example, a  1996 study by Sharf and Freimuth published in the Journal of Health Communication (vol 1,2) indicated that 40% of people who watched the show Thirtysomething during the time when the main character had ovarian cancer, took some action.  The message was effective in activating viewers to seek more information via television:   giving money to a cancer-related causes, changing their diet, sought screening from their physician and increasing involvement in cancer related activist groups.  However, we still must beware of unintended negative effects with other secular and random events.   Current episodes on L.A. Doctors on alternative treatments for cancer and other misinformation endemic in the news medium (such as THE cancer cure) often can procure greater calamities and contribute to modern day myths.

The fourth strategy, social marketing was coined in the middle of this century linking marketing with social psychology and communication. Social Marketing is often thought today of employing the tools of the commercial marketing world; modifying the 4Ps of marketing -- product, price, place and promotion -- to change target audience behavior. In social marketing the focus is on the determinants of the behaviors of our intended publics. By merging the science of marketing, polling, public opinion and communication, social marketers have segmented hundreds of different population groups in the United States.

These can help us test a message and measure the intended effect. A good social marketer realizes if you try to reach everybody, you reach nobody. Social marketing can also be enhanced to affect structural issue and add a fifth P - policy-making.  Such ideas can work in the long-term to assure the conditions in which people can be healthy and make healthy decisions.

Finally, to aid each of these, the new media can provide an additional channel to advance understanding of health within the public. Soon, the Internet will not be associated with a computer as it will converge with other communication vehicles.  The internet will be ubiquitous -- accessed from television, land-linked and cellular phones, satellites, radio, kiosks and other new venues. The new technologies give us great opportunity for influencing traditional media and creating a new delivery system that has the potential to narrowcast audiences and build new communities.

While all of the aforementioned interventions -- Public relations, advocacy, negotiation and social marketing -- have unlimited promise and potential, they will not a priori develop a healthier world. They also require realistic expectations: Consider it took National Heart Lung and Blood Institute (NHLBI) over 20 years to make progress in public action on monitoring of blood pressure and cholesterol levels.

What realistic prevention activities could be expected and accomplished regarding cancer risk? Can we at least aim for 20th century diffusion of diagnostic knowledge such as pap smears, mammograms, fecal occult blood, PSA measurement, or other areas?

Recommendations: What can we do?
 
As I mentioned earlier, I have recommendations all of us here today could embody. Shall we say to build upon the Hippocratic ideal of do no harm to a proactive Oslerian ideal to educate people in the laws of health and prevent the spread of disease.

Clinicians/Practitioners

New and traditional media continue to educate the public with or without a clinician’s involvement. The 21st Century health provider should advance his/her healthy influence by helping to deliver accurate health and medical content. The individual health care provider can also use the practice environment for teachable moments on the rationale behind compliance with prevention visits, diagnostics, or other diet or chemopreventive treatments. With negotiation and shared decision making, we may be able to increase patient compliance beyond the dismal 35% as reported in the literature.

Community citizens

While many hide behind a smokescreen and blame the system for the socially toxic environment, few of us actively participate in advocacy or public relations strategies.  We can determine ways for the 21st Century health provider to become the educator for the health of the community.  Strategically, this means advocating for effective education about cancer beyond the health setting.

While health moves from hospital to home and from a cure to extended care, the researcher, clinician, and public health official should work with medical and community organizations in a multi-disciplinary fashion to influence health related decisions made by non-physicians.  This includes influencing media coverage of health issues and creating local channels for delivery of important health information that ‘matters.’

Researchers

Of course, there is a great role for scientific discovery in advancing health. But science will not have all of the answers.  The translation of progress to the public is limited. In the 21st Century, we must not only strive for new medical discovery, but also to translate such knowledge into usable data for a healthier society. I suggest each researcher consider developing a public abstract or health legend to report with their study results. This can help the media better define the message and also supplement news coverage with correct and understandable data.  The health abstract should be simple enough for public consumption and help translate the message to the public for appropriate action, or in some cases, no action at all.  It could be created by the researcher or a peer-reviewed group that could harness the power of the new technologies to further assist in the dissemination and explanation of what could become a quasi-health “label.”

Leadership

 Finally, there is an opportunity to advance a leadership position not only in publications, but also in the hospital, health care facility, and academic health center to create healthy behavior as part of our marketing milieu. Systematic agenda setting by communicating health risk issues in general could be of great value.  This is where highly credible organizations such as NCI, our professional societies and associations, and our universities could be most powerful by educating the media and thereby education of the public to be more health literate with appropriate expectations.

Could there be a future where the public or the media sources could elicit accurate, up-to-date interpretation of study results that translates ‘risk as we know it’ into real-life daily activities?  Could we develop cancer risk news you can use’?  There are no longer technological barriers to such ideas.  We ought to consider how we can develop delivery systems for effective risk communication.

In conclusion, I spoke earlier  about Galileo.  In the Fall of 1980, Pope John Paul II ordered a new look at the evidence in his trial.  In possibly the longest ‘appeal in history’ Galileo was acquitted in 1992.  However, today, the debate with modern science continues.   Even with a sophisticated and  so-called ‘civil’ peer-review process, there continues to be articles that were initially rejected by a journal and later served as a basis for a Nobel Prize or other significant developments.  Recent examples include the hepatitis B virus and the radio-immunoassay technique.

Galileo’s words from centuries ago also provide an impetus for us assembled here to listen to each other and try new ideas to advance our effectiveness.  He said: “In questions of science, the authority of thousands is not worth the humble reasoning of a single individual.”

Finally, as a physician my primary concerns remain prevention of disease and promotion of healthy, quality lives for all people. My hope is that as we can all maximize effectiveness of communication, and deliver a daily dose of health to make a difference in everybody’s lives.
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