Cancer and communication

Superlatives and exaggerations are commonplace in cancer-related communication. Researchers are rarely to blame, as the exaggerations are born in communication and marketing. It is also difficult to explain the concept of uncertainty which always pertains to research and thus it is often left in the background.

Key points

  • In research institutions, researchers are responsible for vertical communication while communication professionals take care of horizontal communication.
  • The uncertainty of science is a particularly significant challenge when communicating to decision makers, because in politics finding consensus is the goal whereas science aims at finding evidence.
  • The challenging aim of communication is to offer reliable information in different channels. This requires mastering the varied communication styles used by diverse media channels.
  • There is no one public. There are publics, and we must learn how to listen to them.

Publicity is vague and unscientific. Why should a researcher strive to seek publicity? Because that is where the customers are–both political decision makers and patients in need of scientific information. Everyone knows how to communicate, but managing publicity is a skill that requires societal understanding. Our knowledge is shared via media whether we want it or not.

The Cancer Society of Finland, the Cancer Foundation and the Cancer Registry collect valuable information about cancer as an illness from many different perspectives: as a societal burden, a research area, and as the experiences of patients and their loved ones. Hence they have a societal responsibility and right to communicate important issues to the public as well.

Why does cancer intrigue us? Aamulehti’s journalist Sirpa Rauhaniemi summarized the topic excellently at the 2008 Cancer Research Days: we are fascinated with cancer because it is common, an enigma, dramatic and the field is developing.

The Cancer Society is an active communicator. It utilizes several channels. Stakeholder interviews conducted in 2015 showed that the Cancer Society’s communication is valued due to its expertise and objectivity.

Communication focuses on press releases, social media channels, events, web pages and the periodical Syöpä-Cancer, which has a 115 000 copy circulation (circulation information 2015) and approximately one quarter million readers. In addition, there are special publications, such as the Finnish Cancer Registry’s publications and the Cancer Foundations Focus tutkimus magazine which annually tells about research that has received grants from the foundation. Information is also shared via campaigns and marketing that are aimed at beforehand selected focus groups. Their goal is to advance health and raise funds for cancer research.

The Cancer Society of Finland has during its 80-year history gathered a great deal of tacit knowledge of cancer as an illness. The society’s competence is, however, not always evident in the media, as the society places the highest emphasis on the patients’ benefit and it does not have commercial motives to promote its public image.

The Cancer Society has approximately 50 Counselling Nurses who talk with patients and provide them with counselling. The careers of the society’s employees are lengthy and competence is guarded, enabling good sharing of tacit knowledge within the society. This is a luxury in today’s world. One challenge for communication is making this tacit knowledge explicit.

The Cancer Society of Finland is very internationally networked. Core organizations it belongs to include the Nordic Cancer Union (NCU), the Association of European Cancer Leagues (ECL), the Union for International Cancer Control (UICC), the International Agency for Research on Cancer (IARC) as well as the Cancer Registry’s Nordic and international associations (ANCR ja IACR). Additionally, the Cancer Society is part of various networks and EU-ventures.

The Cancer Foundation is obligated by funds received from donors and benefactors and on the other hand by knowledge sharing connected to research grants.

The Finnish Cancer Registry is much more than the official cancer registry: it is the Cancer Society’s research institution. In communication the Finnish Cancer Registry has been guaranteed a strong, independent role. The society’s communication strategy stipulates that scientific research cannot be tied down with society politics so research results are published irrespective to the society’s stand.

The information gap model became outdated, what should replace it?

How we understand the societal communication process is at the heart of communication. Awareness raising was typical in the 1970s and 1980s. The notion was that information gaps can be fixed by sending the receiver information like an injection.

The information gap model became outdated, because some of the receivers were not fond of the injection of information. Especially impoverished individuals seemed to be hard of hearing. The information gap model was further developed towards empowerment, in which the main notion was that individuals must be empowered to participate in controlling their own health. Health literacy helps in this. In communication, popularizing scientific knowledge became an objective. Campaigns had to encourage people to take action.

In an era of mass communication, generalizing knowledge for the wider audience was the predominant model of thinking. Public broadcasting companies and attention-grabbing national campaigns brought health information to every household.

The disruption of communication has, however, damaged the traditional mass communication model as well. First research found that people are different, and concepts such as segments and sub-cultures entered the discussions. They are generalizations of certain groups of public. Tailoring is, however, expensive, as focus group preferences must be constantly studied and new generations must be informed (wash away effect).

Health communications has reached a turning point. The big question is, should exuberantly expensive campaigns be paid for which are aimed at a select few, or should we focus attention to the root of the problem and consider why empowerment does not work for all.

Communication as a concept is always interactive, so attempts have been made to replace the information gap model with dialogue. The idea here is to signify that people participate in the communication process. The key word is engaging and engagement. Audiences have replaced the idea of one audience and researchers are required to take on an expert role [1].

Unfortunately, engagement does not seem to be enough, as our communication environment is becoming increasingly segmented and specialized. It may well be that new methods must be sought for communicating information, such as intentional guidance mechanisms which in Finland have been used for example in euthanasia discussions [2] and municipal democracy [3]. Approaching issues through art is also one way of portraying scientific knowledge.

Information is becoming more visual and it is readily available. Deep information silos containing specialist knowledge are created (vertical communication). In contrast, general knowledge is also needed, and binding information to other communication phenomena (horizontal communication).

In a research institute the researchers are in charge of vertical communication and communication professionals take care of horizontal communication. Societally speaking the aim is the same: to get the wider public, decision makers, different labor groups, cancer patients and their loved ones aware of what kind of disease cancer is, how it can be prevented, and how society acts to lessen the burden of cancer.

Scientific communication: tolerate uncertainty, avoid superlatives

The Cancer Society’s work involves a great deal of scientific communication. A strong foundation for this comes from its own research institute, the Finnish Cancer Registry. In addition, several international cooperation projects create a great deal of cancer knowledge. There are also experts holding positions of trust in the society. The Cancer Foundations annual grants are a good indicator of what direction the field of cancer research is focusing its attention on.

Scientific communication operates in a society that works through media. Publicity is a sphere created by media. It depicts the shared living room of a multitude of different interest groups. The classic political interpretation is that the public dialogue with its multiple voices is the base of Western democracy. Media can, however, also be seen as consumption. Consequently, communication researchers describe publicity as a department store with different sections. In this department store the public acts like a consumer.

Cancer researchers often feel that publicity is unpredictable, vague, unscientific and even a waste of time. Peer recognition is most important amongst researchers. Publicity in turn may entail a reputational risk of being seen as a media lapdog, ‘a docent on call’.

The public agenda has journalists as gatekeepers and journalists follow their own ethic code. On a journalist’s agenda new and unusual are at the very top of the list. A scientific article’s structure is turned upside down to create a news story. At the same time the last sentence is removed, where the researcher states that more research is needed on the subject.

Journalism is predominantly commercial activity. A common misconception is that journalists should somehow advance the greater good and give space to important issues. This is the reasoning many experts give to why something should be in the news. This standpoint forgets one central thing: a journalist only feels accountable to their own public, not to others. There are many sorts of journalists, media and readers.

The Finnish Cancer Registry’s researchers have felt that it is their responsibility to publicly comment on research in their field. Their views are sought after as they are objective. Communication is regular but targeted.

International research has found that lack of time is the most common reason why researchers steer clear of the media. Often publicity does not advance one’s career and cannot be seen in one’s paycheck. Similar results have been apparent in Finnish studies as well. A Finnish study on social scientists showed that researchers felt that their most natural expert role was to give expert interviews to the media. The next most natural roles were giving presentations and writing guest columns and other expert articles to the print media. Cooperation was most hindered by the journalists’ habit of exaggerating issues by generalizing [4, 5].

Medical information at the Cancer Society is the responsibility of expert physicians. The Chief Physician of the Cancer Society is a sought after interviewee. Journalists often find it easy to find a scientific expert but difficult to get a patient to participate in a story. Hence the Cancer Society also receives many requests for patient representatives for stories.

The structural change in Finnish media has depleted editorial resources. There are less experts amongst editorial staff. Luckily someone is usually always interested in health. Nevertheless, it is possible that in the future organizations such as the Cancer Society of Finland will participate more and more in gathering background information for articles.

Cancer is often portrayed in public through patient stories. When a public figure gets cancer, it is news.

It is especially important to ensure that decision makers have the best possible knowledge at their disposal. Research indicates that there is room for improvement in the information base that decisions are founded on. Political decision makers live in the public limelight, which makes information already present in public discussion more effective than other expert knowledge [6].

Special characteristics of cancer communication

Cancer communication has certain special characteristics. Communication regarding research commonly uses superlatives and promises too much. Often times researchers are not responsible for this, as the exaggerations are born in communication and marketing. It is also challenging to explain the concept of uncertainty always pertaining to research and thus it is often left in the background. Oversimplifications may lead to completely wrong paths. Multiple voices common in media can lead to false balance and promote superstition.

Exaggeration. Researchers searched for information regarding cancer on Google using superlatives as their search words and gathered  96 news items in a few days. When these news items were scrutinized it was found that many medications with modest effect were being called revolutionary and ground-breaking in the media. Consequently, this may lead to the public attaining an inaccurate understanding of the medications’ impacts. [7]

At times commercial motives are behind breakthrough news. On the other hand, it is very human to have a research group become over-enthusiastic about their work thus creating a delusion of having a very narrow view.

Uncertainty. Especially with information regarding cancer a misconception prevails that we already know everything. This is not the case. Science always involves uncertainty which is why scientific knowledge is continually renewing and fixing itself. For researchers, uncertainty is part of the job, but when brought to the public’s attention, uncertainty may give the impression of ignorance.

When the newest information is used to reach conclusions in the news, it would be important for the researcher to remind that evidence is rarely built by one study. The uncertainty of science is a particularly large challenge when communicating to decision makers, because in politics finding consensus is the goal whereas science aims at finding evidence [8].

An example of misunderstandings relating to uncertainty comes from the cancer risk associated to mobile phones. When epidemiologic research spoke or the precautionary principle, it raised concerns even of secrecy. The precautionary principle means that some phenomena, product or procedure may have hazardous impact and the risk cannot be sufficiently defined. When research emphasized the importance of safety in devices used, this was interpreted as an indirect way of saying that current devices were dangerous. Even mainstream media was struck with a misguided notion that journalism could now expose the real truth as a revelation [9].

A risk to the population or the individual. A great risk of misconceptions is related to population based research which must not be interpreted as individual risks. I have often compared the relationship of the population to the individual to that of GDP which we know from economics to our own wallet. Finland’s GDP could grow and the economy might be booming, even though an individual’s finances were in dire straits.

In 2015 one of the biggest scientific misunderstandings was the research published by the American magazine Science, which had mathematical modeling about the cell division of tissue samples. The article resulted in wide-spread news coverage claiming that cancer was a case of bad luck. The research was erroneously generalized to cancer prevention, in addition to which individuals interpreted the results as their own risk. [10]. Mathematician Christian Tomasetti said he received emails from people who were relieved that their cancer wasn’t their own fault after all. The idea of chance and deliberate cancer prevention being both based on evidence but on different levels seemed much too complex an idea.

False balance. The media has also had to check their own operating principles. In documentaries a typical way of handling an issue is to bring out several viewpoints. But how well is balance achieved when cancer research is discussed by a researcher, a patient, and an alternative treatment provider?

The British public service broadcaster BBC has paid attention to the false balance which may lead to the distortion of scientific information. The BBC Foundation commissioned research which showed that an illusion of conflict can be created when experts debate with laymen or other experts in their field who represent opposite views. Similar debates have been held in Finland as well for instance regarding vaccination, but no guidelines have been set.

Professor Heikki Hiilamo has brought forth the notion of purposeful conflict manipulation, when the tobacco industry has sidestepped information of the health hazards of smoking. [11]

The patient at the center: knowledge, emotions and empathy

Communication aiming to reach patients and their loved ones is undergoing the greatest change. Every weekday 125 Finnish people are diagnosed with cancer. Cancer usually comes as a surprise–especially the time-period before treatment starts is full of uncertainty. At this point it is important to have easily accessible information available about cancer. The Cancer Society offers online information aimed at both healthcare professionals and the public. A world of knowledge opens up via the web.

Traditional media exists, but different age groups utilize media in very dissimilar ways. Television or radio may be used with a mobile phone.

The challenging aim of communication is to offer reliable information in different channels. This requires mastering the varied communication styles used by diverse media channels. Writing for the web requires its own expertise. In television news or Instagram-videos one must master seconds. Search engine optimized text finds its readers best.

Online communication has created new tasks as well. Analytics is important. Everything that is communicated online must be assessable.

A cancer patient’s path takes them through a multitude of channels. Finnish media consumption alters greatly. If the patient is used to using media, we know she or he will be impatient. A patient living deep in the countryside on the other hand will only listen to a doctor and does not wish for any other kind of communication.

Style is important in communication. In online communication the Cancer Society aims at communicating in a formal style with compassion. Providing psychosocial support is important in communicating to patients and their loved ones. Overly formal text can seem cold, while unnatural verve is not needed in patient communication. Hence the idea that one message could be replicated from one channel to the next is far too easy. Each communication channels have their own audience.

In an abundance of communication available one has to stand out. There is no shortcut for this either. High quality, current and regularly updated information is the surest way to maintain sub-audiences. Service thinking has taken hold in communication.

Publics: understanding differences requires work

Personal communication is the most efficient. Interaction stems from empathetic eye contact and the creation of consensus. In mass communication conducted via media, an illusion of interaction is easily born. One party appears to be explaining and listening and the other seems to be listening, but there is no interaction. In its place problems arise. These problems social media then in turn announces to the world.

Power has been transferred to the receiver. In the old world controlling media was a question of wealth as communication required money. Now we have moved from an era of scarceness to a time of abundance. Modern people can suspect everything, including sensible warnings. It is her or his prerogative as a citizen. Communication must be approached through understanding and cooperation.

There is no one public. There are publics, and we must learn how to listen to them.

Literature

  1. Bucchi M, Trench B, edit. Routledge Handbook of Public Communications of Science and Technology. 2. printing. London: Routledge 2014.
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  3. Raisio H, Vartiainen P. Osallistumisen illuusiosta aitoon vaikuttamiseen. Deliberatiivisesta demokratiasta ja kansalaisraatien toteuttamisesta Suomessa. Helsinki: Association of Finnish Local and Regional Authorities 2011.
  4. TNS-BMRB & PSI: Factors Affecting Public Engagement by Researchers: A study on behalf of a Consortium of UK public research funders. Wellcome Trust 2015. www.wellcome.ac.uk/PERSurvey.
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  7. Abola MV, Prasad V. The use of superlatives in cancer research. JAMA Oncol 2016; 2(1): 139–141. [DIRECT LINK IN THE ONLINE VERSION doi:10.1001/jamaoncol.2015.3931]
  8. Sense about science. Making sense of uncertainty. Why uncertainty is part of science. Published online 27.6.2013. http://www.senseaboutscience.org/resources.php/127/making-sense-of-uncertainty.
  9. Lipponen S. Elektromagneettiset aallot läpäisevät portinvartijat. Media & viestintä 2009; 32(1): 105–7.
  10. Couzin-Francel J. Bad luck and cancer. A science reporter’s reflections on a controversial story. Science. Published online 13.1.2015. http://news.sciencemag.org/biology/2015/01/bad-luck-and-cancer-science-reporter-s-reflections-controversial-story.
  11. Virtanen M. Tasapuolisuusharhan kourissa. Yle news, blog. Published online 17.11.2014. http://yle.fi/uutiset/matti_virtanen_tasapuolisuusharhan_vallassa/7631911.