This commentary was presented at the Symposium on Preventing
Child Exposures to Environmental Hazards: Research and Policy Issues held
18-19 March 1994 in Washington, DC. Manuscript received: December 5,
1994; accepted: May 15, 1995.
Address correspondence to Dr. David O. Carpenter, Wadsworth
Center for Laboratories and Research, New York State Department of Health
and School of Public Health, Albany, New York 12201-0509. Telephone (518)
458-6773. Fax (518) 474-5044.
While we, of course, do not know the causes and origins of all diseases,
it is important to emphasize the extent to which lifestyle factors contribute
to a great variety of diseases. McGinnis and Foege (1) have recently
reported that lifestyle choices kill more Americans than any other single
factor. The best examples are the diseases associated with cigarette smoking
(lung cancer, a variety of less common cancers, and heart disease). Some
types of cancer are related to diet or to the degree of exposure to sunlight.
Individuals may choose the degree of their own exposure to these factors.
People also have a choice in avoiding some infectious diseases, the most
obvious of which is human immunodeficiency virus (HIV). But what is true
for HIV is also true for the other sexually transmitted diseases, even though
these diseases are not lethal. If people know that a particular exposure
may cause disease and if they understand how exposure can occur, they each
have the option to change personal behavior or to take other steps to reduce
the risk of developing particular diseases.
Infectious diseases caused by poor sanitation can be considered lifestyle
diseases as well; although many individuals may not have the resources to
escape the poverty that is frequently related to these diseases, knowledge
of the dangers of contaminated drinking water and food, as well as knowledge
of ways to avoid these dangers, can reduce the risk of disease (e.g., by
boiling water or selecting locations for waste far from the water supply).
Disease from environmental agents also is sometimes a matter of lifestyle
and choice. However, neither the scientific community nor the public health
community can expect people to change their behavior or take action if they
are not informed of the relationship between exposure and disease and if
they are not convinced that it is in their self-interest to change. Thus
both knowledge and motivation are essential for people to change behavior.
The scientific and public health communities are often inadequate at
effectively communicating information to the public. This is a matter of
time and opportunity, but it is also a matter of skill and attitude. Most
scientists consider it undesirable to over-simplify their research results
and implications, so unfortunately most people cannot understand the complex
information; public meetings are not usually called until there is a considerable
amount of anxiety or even hysteria over an issue. Therefore, effective communication
with the public usually depends on the media, and often this means that
a reporter is the link between the scientist and the public. The advantage
of this is that someone who is trained for the task communicates with the
public, so the message may be more easily transmitted to the target audience.
However, this has also a disadvantage in that there are now two points at
which communication can be distorted, scientist to reporter and reporter
to the public.
There are several general but interrelated principles that appear to
be important in the general approach to communication between the scientific
community and the public. These are trust, respect, empowerment, and equity;
each is detailed below. These principles probably apply equally to communication
between any two communities that differ in perspective. I will discuss these
four principles in light of my personal experiences in three quite different
arenas in which I have been involved: I host a weekly radio program called
"The Health Show," which is produced by a local public radio station
in Albany; I have frequently been involved in press coverage of the controversial
issue of whether there are significant health hazards from magnetic fields
produced by electricity; I am the principal investigator in a National Institute
of Environmental Health Sciences program project grant focused on the study
of the effects of health hazards from local pollution on a Native American
community in northern New York.
While different audiences are involved in these three situations, they
share important common features, many people in these audiences have little
scientific background. "The Health Show" communicates general
information about scientific advances, primarily to the people who listen
to public radio. The question of health hazards from electricity is more
controversial and is covered more widely in the media, from the television
evening news to women's magazines. While it might appear that a research
project focused on a special population has little to do with the questions
of communication, my colleagues and I have perhaps learned more about effective
(and ineffective) communication through this experience than from any other
single source.
There has been a great decline in the trust in our major institutions,
including medicine, government, and media, and certainly in authority. There
are many causes of this loss of trust, and it is clear that the message
will be lost if the messenger is not trusted. Furthermore, factors that
create trust in one segment of the population may not be effective in others.
Unfortunately for many scientists, public trust does not automatically correlate
with how much the public knows about a scientist's advanced degrees from
distinguished institutions, bibliography, or research grants. In fact, often
these very factors on which scientists tend to evaluate each other become
barriers in communicating with the public.
Many segments of our society have their own culture. For any message
to get to all segments of the population, we must find the appropriate vehicle,
and we must give the message in a form that will be heard and understood.
This is an extraordinarily difficult task. Many people in our society receive
their health information only from magazines and television, especially
from talk shows. Other than at school, many teens get information only from
movies, television, and music. Few scientists are facile at accessing or
using these avenues and have minimal communication with those who write
or produce in these media. Nevertheless, the important point is that much
of the general public not only gets most of their information from these
sources, but also views information from them as being the final word. If
we as health professionals have messages that are important for the general
public to hear, we must learn how to present these messages through the
media.
The most effective messenger is someone who has an affiliation with the
groups involved in the communication. The most effective individual for
communication with a community will likely be someone with both the ethnicity
and background of the community. Success in communication increases if the
message is sent in a fashion in which it is best understood by the public
to which it is directed. Because of the distance from day-to-day life in
individual communities, it is often difficult for the scientific community
to establish the trust that is essential for any effective communication.
Therefore there is a much better chance that the message will be heard and
followed if the messenger is credible to the community, and this is particularly
true if the messenger comes from the community.
My colleagues and I have been involved in a research program with a group
of Mohawk Native Americans at the Akwesasne. The Mohawk Nation at Akwesasne
consists of about 12,000
individuals who live on and near the St. Lawrence River at the junction
of New York, Ontario and Quebec. Our study there is focused on human contamination
with polychlorinated biphenyls (PCBs), polycyclic aromatic hydrocarbons
(PAHs), dioxins, and dibenzofurans, with particular attention to contaminants
in human breast milk. Our hypothesis has been that consumption of fish from
local polluted waters is the principal source of exposure. Thus, there are
two serious problems for this population: concern over health effects, especially
in children, and anger that local industry has polluted local fishing grounds
and forced a serious disruption of a traditional way of life.
Several factors have been particularly important in developing a trusting
working relationship with the Mohawks. In the beginning, our research team
came to the Akwesasne at the request of Mohawks. A traditional Mohawk midwife,
Katsi Cook, became concerned for the health of her small children because
of the appearance and smell of chemicals around her home and in her basement.
She appealed to some of our group for help in determining the levels of
pollution and the effects on her and her family. Mrs. Cook, who no longer
lives on the reservation, remains a co-investigator on our grant, and she
has been an invaluable link to the community. To a great degree and as a
result of her insight and guidance, all of our local investigators are from
the Mohawk community. This helps enormously to get cooperation, and it also
brings employment to the community. These individuals assist in finding
the pregnant women and in collecting histories and specimens from them;
the field-sampling staff collect fish, wildlife, soil, water, and air samples.
We pay the field staff through a subcontract of the grant to the environmental
divisions of the Mohawk Nation, and we have developed good working relationships
with the two individuals who head these groups. We have tried to make this
project integral to the community and to be as responsive as possible to
the needs and concerns of the community. We have taken our full team of
some 60 people to the Akwesasne for annual meetings with the project's external
advisory committee; the community is also invited. We have had frequent
public meetings at the Akwesasne. These meetings are not often attended
by great numbers of people but meetings are at least held at a time when
individuals there can meet the investigators, make suggestions, ask questions,
and get some understanding of the results to date. These visits have been
enormously beneficial as a means of providing all of us who are not Mohawks
with a sense of the culture and in establishing a sense of mutual trust.
To a degree, our program has documented an improvement in the health
status of the people at the Akwesasne. Our hypothesis was that local fish
consumption was associated with elevated breast-milk contaminants and that
this posed a health hazard to infants. At the beginning of the program,
we could show that breast-milk PCB concentration was correlated with local
fish consumption. We worked with the community in advocating that people
follow the recommendations of the fish-consumption advisories issued by
both the New York and provincial governments; we now find that the levels
of contaminants in breast milk of new mothers does not differ significantly
from our control population in levels of PCBs. This has been accomplished
by a dramatic reduction in local fish consumption. The community is left
with enormous anger since they have had to abandon a traditional way of
life because of industry. We and others are working with the community to
develop fish aquaculture in clean waters to safely allow at least some restoration
of the traditional diet. Considerable anxiety remains about the health of
older individuals in the population, many of whom have been eating contaminated
fish for years.
There are different, but no less significant, barriers to trust and communication
with other ethnic communities. Our country remains a nation of immigrants,
and many of these people do not speak English. Getting information to immigrant
populations remains a major difficulty because of both language and culture.
These problems pale by comparison with the difficulty of reaching teenagers,
when the message from any adult is suspect and more likely not heard. It
is difficult to find the critical individuals who bridge the health community
with these targeted population groups.
Another major public health debate in which I have a personal involvement
is the question of whether or not there are significant public health hazards
from exposure to electromagnetic fields coming from power lines, appliances,
household wiring, and occupational settings. I became involved in this issue
when working with the New York State Powerlines Project between 1982 and
1987. I have become increasingly convinced that there not only is an association
between exposure to magnetic fields and certain types of cancer (leukemia
and brain cancers) in both children and adults, but also that, for a variety
of reasons (mostly our inability to determine exposure accurately), the
association is likely to be stronger than indicated by the odds ratio of
about 2.0 (which comes from most epidemiological studies). Many members
of the scientific community do not agree with me; they either find the evidence
to be equivocal or, in some cases, absolutely deny that there can possibly
be such an association.
There is at least a perception that some scientists judgments on the
issue might be clouded by factors other than a truly objective assessment
of the information available. Some scientists may have financial conflicts
of interest; they may be employed by or hold research grants from utility
companies. Some health officials serve as consultants to industry organizations,
often offering opinions designed to minimize any public concern; these people
are often well paid. It is difficult in cases such as these to determine
whether the payments influence the judgment, but it is also clear that the
same industry usually does not offer similar dollars to those individuals
who take different positions. Clearly any perception of even the appearance
of a conflict of interest erodes the credibility of a health professional
as an individual and creates a cynicism in the public mind about the objectivity
of the greater health community.
The issue of respect is related to trust, but there is a distinction.
Even when a trusting communication is established, if there is no respect
in the messenger and the message, it is unlikely that the communication
will have the desired consequences.
How does a scientist get the public to respect not only the scientist
as an individual, but also the message he or she is trying to communicate?
As in the issue of trust, it must be understood that different segments
of the population give respect on the basis of different considerations,
and therefore it is essential to tailor how credentials are presented to
different audiences. For example, to many readers of The New York Times,
a person's credibility as an expert is a function of the position held,
where he or she went to school, and the general status held within the scientific
community. This is not very different from those criteria by which scientists
in general evaluate each other. However, the great majority of Americans
do not obtain their information from this source and may not even consider
an Ivy League education to be a positive thing. People may require that
someone be a doctor, but give their respect more on the basis of indications
that the doctor relates to their lifestyle and day-to-day problems. Arrogance
is detrimental to gaining respect with at least some part of the public.
The language used in communication is important with regard to respect.
No one likes information presented in such a technical fashion that it is
not understandable; at the same time no one likes condescending language
that conveys that the scientist thinks that the audience is lacking in intelligence
and in the ability to understand. This is an extraordinarily important consideration.
What it means is that to be effective the level of communication must be
accurately targeted to each audience. For example, most listeners of "The
Health Show" are relatively well educated and are, in general, informed
and concerned about lifestyle issues that relate to personal health. For
this audience, the format we use (short interviews with different scientists)
works well. The host can help in directing the conversation, help in translating
technical terms into something the audience can understand, and still allow
scientists to describe their research in their own words. However, the same
language will be totally ineffectual with many other audiences.
While communication with any lay public should be presented in as nontechnical
a form as possible, it is a mistake to think of the public as being stupid.
This is perhaps the greatest single barrier between scientists and the public.
Many educated people forget that a lack of education does not necessarily
indicate a lack of intelligence. In terms of the effectiveness of communication,
it is essential that the scientist honestly feels and shows respect for
the public with which he or she is communicating. The failure to do so is
very apparent to the audience through a variety of verbal and nonverbal
clues and can doom the chances of any message being positively received
and followed. To a great degree this is the heart of the problem in reaching
teenagers. The teen years are ones of developing independence and, while
that is very desirable, it makes for barriers with adults in general. For
example, teens are not commonly represented among scientists or the science
media. These two factors--lack of respect and lack of representation with
the scientific community--are major barriers to effective communication.
Even when the issues are controversial, there are good and important
reasons to involve the public in the debate, share with them the different
perspectives, and include them in the discussions over what can be done
to solve the problem. For example, in the magnetic field health-effects
debate, there are many scientists who feel this is a nonissue; others feel
that it is potentially a very significant public health issue and that it
is wise for individuals to take steps to reduce exposure to themselves and
their families. The degree of hazard from magnetic fields cannot be adequately
assessed at present, but Morgan and his colleagues at Carnegie Mellon University
(2) have advocated the concept of "prudent avoidance,"
which is to advise the public to reduce their exposure to magnetic fields
as much as they can without going to either great inconvenience or cost.
Others do not feel that the public should be involved at all until there
is a clear consensus within the scientific community. I see the latter view
as reflecting a general lack of respect for the ability of individuals to
make their own decisions. While there is, of course, a certain danger of
confusing the public by giving opposite messages, I prefer to consider the
public as consisting of responsible adults, not small children who cannot
understand a degree of uncertainty. Involving the public openly in issues
that are controversial is also a part of the process of empowering individuals
to take charge of their own behavior and health.
The goal of the scientific, public health, and medical communities, as
well as the health communicator, should be to empower the public to solve
their own problems. This is true whether one is speaking of the whole nonscientific
public, selected groups on the basis of occupation, education, or ethnicity,
or individuals. It is simply not possible for the health community to dictate
and enforce a standard lifestyle. This is the case for lifestyle factors
that contribute to the major causes of death (e.g., heart disease, cancer,
and infectious disease), and it is particularly true for the most social
diseases (e.g., smoking, drug use, and violence). Empowerment is the natural
end point of successful communication; it means that a community and the
individuals within that community take charge of their own lives.
Empowerment of the public in any health-related issue, whether the public
constitutes the residents of a particular block in the city or a defined
minority or immigrant population, will be more successful if there has been
successful communication with the scientific and health communities in advance.
The challenge is to impart sufficient information to the community to assist
people in making appropriate choices for action without taking the action
steps for the community. Clearly one very effective way to accomplish this
is through training members of the community so that they can take the lead.
In our work with the Akwesasne, for example, we have tried to incorporate
Mohawk master's and doctoral students into the program and to involve Mohawks
who are studying at other universities. We expect that at least some of
these new master's and doctoral level Mohawks will return to the community
and that they will help the community to deal with the host of issues that
relate to health. But even if there are no fully trained health professionals
available, there are always community leaders, religious leaders, and others
who are trusted in the community. These are the kind of community leaders
with whom outside scientific and health personnel can coordinate; if trusting
and mutually respectful relationships can be developed, these individuals
can help achieve the goals of improving the health of the community and,
at the same time, assist the community in taking charge of its own affairs.
Most of us do not think in terms of equity when we discuss communicating
information to the public. I first heard the word equity mentioned in this
context by one of our Mohawk colleagues when he was speaking to a group
of Canadian scientists who were about to begin a research study at the Akwesasne.
In describing the characteristics of the relationship that he expected to
develop, he mentioned equity along with trust, respect and, empowerment.
My first reaction to this comment was puzzlement. Equity is a term applicable
to business and investment, but it is not usually applied to the giving
of information and certainly not in connection to research. Yet, upon consideration,
I saw that if one goal of the scientific and health communities is to empower
individuals and to promote the ability of specific groups to assume responsibility
for their own health, then equity is an important consideration. Equity
implies that there is a personal investment in health. Perhaps one of the
reasons that health communication and research efforts, no matter how well
intended, often fail to accomplish significant changes in human behavior
is that we fail to appreciate that if there are no incentives for personal
gain and investment implicit in the notion of equity there is unlikely to
be any change in behavior.
What is equity in this context? It is easy to define equity in the context
of our research program at the Akwesasne. Equity means that some of the
support dollars from the grant go to the community, members of the community
are supported on the grant, and others are trained through the program.
Equity means that the design of the research protocol reflects the needs
and concerns of the community and is not limited only to what some Albany-based
investigator thinks is a fundable project. We have found this to be a very
significant point and, in fact, we are redesigning our renewal application
to reflect community concerns related to breast cancer and depression.
Does the concept of equity have any relevance to the general issue of
communication of science and health information to the public? Perhaps it
depends on how the goal of the communication is defined and how equity is
defined. If the goal of the communication is to empower individuals, and
if equity means to provide individuals with a personal reason to take and
use the information for that purpose, then the concept is very relevant.
Equity may not be a consideration if the intention is to give information
about very basic or theoretical scientific advances that have no immediate
application to personal behavior, if
personal behavior is the target of the information, then we should think
in terms of equity. If the health communicator can "sell" the
message, equity will help the public to "buy in" to the solution
of the problem; members of the public can then feel that they have a personal
investment in healthy behavior. To really accomplish our goals, whether
for general public support for basic research or to promote better health
through lifestyle changes, we must find self-serving reasons for people
to care about health.
It is not easy to develop a procedure for integrating equity into communication
with the public. Certainly equity issues are considered by advertisers of
consumer goods to persuade individuals that the use of a produce will bring
personal benefit. This approach is in contrast to the usual academic approach
in which the teacher may tell the students what is right and what to do.
For the public that alone does not work very well. We as scientists and
health professionals need to learn much more effectively how to "sell"
our product. Perhaps considering equity as a factor in our communication
will help.
In summary, communication with the public is frequently difficult for
scientists and public health professionals, whether done via the media or
by personal contact. The difficulties increase the more the public, the
target of the communication, differs from the communicators in culture,
socioeconomic status, age, education and value systems. There are at least
four factors that can contribute to effective communication across these
barriers. The first and most important is establishing trust, which can
be inhibited by arrogance, deceit, or conflicts of interest and can be promoted
by the use of appropriate language, the use of media that the subject population
relates to, and genuine caring. The second factor, respect, is essential,
but most people base respect on different value systems than scientists
(e.g., the numbers of papers published); respect must be earned. The other
two critical factors are empowerment, a genuine attempt to provide the public
with the tools to make their own decisions for better health, and equity,
the provision of resources to accomplish the empowerment. If we want people
to hear what we say and to change their own lifestyles as a result, they
must feel that they have a personal stake in the issue.
REFERENCES
1. McGinnis JM, Foege WH. Actual causes of death in the
United States. JAMA 10:2207-2212 (1993).
2. Morgan MG. Power-frequency electric and magnetic fields:
issues of risk management and risk communication. In: Biological Effects
of Electric and Magnetic Fields, Vol II (Carpenter DO, Ayrapetyan SN, eds).
New York:Academic Press, in press.
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Last Update: September 15, 1998
