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The role of the media in steering public opinion on healthcare issues
Health Policy 63 (2003) 179 /186 www.elsevier.com/locate/healthpol
The role of the media in steering public opinion on healthcare issues Eva Benelli * ZADIG-ROMA, Agenzia di Gionalismo Scientifico, ZADIG Roma srl, Via Monte Cristallo 6, 00141 Rome, Italy Received 28 October 2001; accepted 26 March 2002
Abstract The media can play an important role in influencing both the demand and supply of medical treatments, regardless of evidence of effectiveness. This can be highlighted by recent experiences in Italy following publicity for a new unproven treatment in Italy, which it was claimed was highly successful in treating a wide range of cancers. The media role in influencing both health authorities to fund large scale trials of the intervention and patients awareness and expectations of therapy are discussed. The changes in Italian media over the last 20 years have seen a reduction in the numbers of specialist medical journals, with increased emphasis placed on sensationalism rather than accuracy. The media though has the potential to play in future an important strategic role in disseminating accurate information on issues pertaining to health. # 2002 Published by Elsevier Science Ireland Ltd. Keywords: Media; Italy; Public opinion; Evidence based medicine; Cancer treatment
1. Introduction In 1998, the Italian health authorities had to face a storm that raged throughout the entire year and which still causes a stir some 2 years later, the Di Bella case. It was a dramatic experience, which left a strong mark on relations between citizens and institutions, changed the way of thinking of many researchers and health officials, and repre-
* Tel.: /39-06-817-5644; fax: /39-06-817-6140 E-mail address: [email protected] (E. Benelli).
sented an alarming sign of the power of the media to steer public opinion in matters pertaining to health. In the last months of 1997, an elderly physiologist from Modena, Professor Luigi Di Bella, made the headlines. He claimed that he had developed a treatment against cancer that is viable, effective and produces no side effects. All types of tumours could be treated, all patients could find new hope thanks to the treatment that he proposes. Indeed, in 20 years he argued at least 10,000 patients have been cured thanks to this method. The only flaw was its cost. The treatment required
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substantial out-of-pocket payment by the patient. Soon, the proposition that the Di Bella method should be reimbursed under the Italian National Health System became the battle cry of the growing numbers of supporters for the physiologist from Modena. Patients’ associations cropped up and organised protests, both in the streets and through the media. Supporters of the professor appeared regularly on television, first on programmes dealing with health, then on more generalist talk-shows. A private radio station totally embraced the Di Bella cause. It steered patients, regularly broadcast interviews with the professor’s followers, and even served as a ‘grapevine’ for a mounting protest against the health authorities who were deemed ‘guilty’ of demanding useless validations of the therapy. The media on the whole sided openly with the professor [1]. Only after a few months did the more responsible press begin to change tone and attitude. However, almost a year passed before television took a more cautious stance, though without ever being totally convinced. In May 2000 for instance, television shows were aired on national networks which re-proposed the professor’s protocol.
2. Media influence on decision makers The impact of the media on the country was devastating. Patients actually seeking the treatment have never been more than a few thousand of the total one and a half million cancer patients in Italy [2]. Yet their voice, amplified by the media, finally managed to insist on an assessment of the treatment, something which the health authorities had earlier refused to do in the absence of convincing arguments. The paradox lies in the fact that the supporters of the Di Bella method soon lost interest in the validation tests, which were destined to reveal the ineffectiveness of the Di Bella method. Through the media hype, the Ministry of Health and the Higher Board for Health became convinced that the authority responsible for managing health policies had no choice other than to proceed with the review [3]. The health authority could not
fail to heed the call of even just the patients who do use the treatment */be they a few thousand */ not to mention that of the wider public opinion which, though poorly informed, wanted to know more. Evaluation therefore became the only way to provide Italian citizens with a clear indication as to whether the therapy was effective. Basically, it was a choice that had more to do with politics and health management than with scientific rigour. The opinions of researchers at this point began to clash. Some, who were initially against assessment, converted to health care pragmatism. Others remain convinced that the evaluation should never have been conducted. The final direct costs of the case exceeded 50 billion lire, (a25.8 million). The indirect costs are probably much higher. This is a huge sum, especially considering the meagre budget allocated for scientific research in Italy. But once again the media played an important role in this expenditure. The costs of the research testing and of the observation study that accompanied it, were slightly below two billion lire (a1.033 million) [4]. The bulk of expenses were consequential of a decision taken by the Constitutional Court, the supreme Italian institutional consultative body [5]. The Court established that no discrimination was to be allowed against patients excluded from the validation study, and that therefore they too were entitled to receive the drug free of charge for as long as the experimentation lasted. This represented a singular reversal of the rationale where it is the patients who are involved in a clinical study that have to be protected */for the obvious risks they are exposed to*/and not the ones who are excluded! But would things ever have gone this far without the media campaign, which in actual fact promoted the Di Bella therapy long before the review got under way?
3. Media influence on patients To what extent did the patients in favour of the cancer treatment proposed by Professor Di Bella formulate their convictions on the basis of the information delivered by the press and, in particular, by television? An interesting answer is
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provided by a study which was co-ordinated by Rodolfo Passalacqua and Renata Todeschini of the oncology department at the Parma hospital [6]. The study involved 13 oncology centres scattered across the country between 25 February and 31 March 1998, precisely when the public was being told (on a daily basis and with very few contrasting opinions) that Di Bella therapy was not only sure to treat virtually all tumours, but in fact represented a successful long-term outcome. For 5 days in a row, the researchers distributed a questionnaire with 10 multiple-choice questions to all the patients who visited the oncology centres. Of the 1300 tests handed out, almost 90% were analysed and validated by the Verona oncology centre. As was to be expected, the vast majority of patients stated that they knew about the Di Bella protocol (85% of interviewees) and had drawn their information from the media. Television and radio stations represented the main source of information, with 62% of interviewees, citing these as the main media. Newspapers and other printed media were slightly behind (only 26% of patients stated that they got information from this source). Doctors were rarely contacted */not more than 5% of the patients interviewed said they had talked about therapies with their physician. The impact of the media campaign was therefore considerable. Patients had a very positive impression of the effectiveness of the Di Bella method: only 1% judged it ineffective compared with 42% who judged it positively and 57% who considered its outcome uncertain. In more than half of the cases examined (53%) the hope was for full recovery, against 46% who were not completely convinced and 1% who considered the chances of recovering lower. These results should make us reflect on another effect */which is by no means secondary to the press campaign staged around the Di Bella case: disorientation. Patients did not receive the accurate information they were entitled to, but nor did they receive precise information either. Indeed, more than half the patients admitted that they felt more confused and unsure than before the media campaign. The coverage of the Di Bella case by the Italian and international media was a truly significant experience. Perhaps, at the end of the last century,
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it was the one case that was most indicative of the ability of the media to steer public opinion vis-a`vis a proposed therapy, a choice of health care policy or simply regarding research direction. However, taking stock of the media’s power to influence is just one aspect of a reflection on its role in society. Equally important is the attempt to evaluate which rationale and mechanisms determine the choices of the media in terms of how to cover a news item or, as with the Di Bella case, an event that evolves over time.
4. Media interest in medicine The Italian media adore issues pertaining to health and medicine. In just a few years dozens of specialised newspaper and magazine inserts have cropped up, while news regarding health, medical therapies and disorders receive much more coverage than they did 15 years ago. National television has even chosen to air a long programme on medicine during primetime, as an alternative to Sunday night sports shows. However, if on the one hand the slots dedicated to health and medicine have increased, on the other hand, the competent professional figures (specialised journalists in particular) have decreased in the editorial offices of newspapers, news broadcasters and even press agencies. This contradiction generates another one. In newspapers, magazines, television (and radio) broadcasts, news regarding medicine, health and science are ever more present, but in a way that is inversely proportional to the critical function exercised by journalists. ‘Scientists have said’ is becoming the only form of accreditation deemed necessary. And, what is more, scientists are seen as one category, within the framework of which there is no internal debate and no doubts exist. Such an attitude reflects a considerable degree of indifference towards the reliability of medical and scientific news and indeed the news source itself. Hence, in the Italian media scientifically proven therapies enjoy the same respect as the ‘alternative’, folk, and metaphysical ones. One seldom comes across even a single attempt to offer a critical contribution. The journalist makes no
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effort to interpret, filter, comment, raise doubts. In essence, scepticism is banned. Unfortunately, even when */as in the Di Bella case or other delicate situations (for instance the recurring ‘awakenings’ from comas which always have repercussions on organ donation) */it would be indispensable to inform citizens with meticulous rationality, what usually happens in the editorial offices of the Italian media, is that the few journalists who are competent in medical /scientific matters tend to be isolated. The phenomenon is so deeply ingrained that, in the first months of the Di Bella case, some 30 journalists specialising in medical /scientific issues, plus some exponents of the scientific approach, launched an appeal which was published in the daily newspaper Il Sole24Ore to complain about this type of news coverage (see Appendix A). In the appeal, the signatories wrote: While we wait for the trials and the results of the experimentation on the Di Bella method, the case calls for a reflection on the quality of the information, which for weeks has swamped readers and television viewers. Information needs to be balanced, competent, accurate, objective, especially when it concerns a topic like cancer, one of the nightmares of modern society . . . The mass media have amplified and fuelled the clash between two fronts */left and right, official medicine and alternative or unconventional therapies, public and private health care, understood as the freedom to seek treatment according to one’s convictions. [This] looses sight of the task of informing public opinion correctly and avoiding shifting the focus of attention from a strictly scientific sphere to a pseudoscientific or, even worse, political perspective. The appeal, which was also published at the height of the Di Bella case in a couple of national newspapers and some specialised magazines, did not succeed in changing the course of events, neither then nor later with regard to other dramatic events involving public health. On the contrary, the more public interest for health-
related issues has grown, the more competent journalists have dropped out of the picture.
5. The media and the mechanisms underpinning the ‘production’ of news In order to understand the root cause of this change, it is necessary to look at how the organisation of the work and the cultural profiles of media editorial offices changed during the 1980s and 1990s [7]; especially, though not exclusively, within the Italian media. An editorial office comprises management, which consists of one or more editors-in-chief (the ‘political mind’); a chief managing editor and several other managing editors (they run the paper/journal directly, transforming the fundamental ideas into pages and headlines and choosing the most important items to publish); senior editors (one for each thematic area into which the office is divided i.e. domestic politics, Italian news, foreign affairs, finance, sports, and culture, etc.); and lastly the editorial staff. At the end of the 1970s, the editor-in-chief, the managing editor (with a couple of deputies) and not more than 10 senior editors were the only infrastructure running the newspapers. The rest, dozens and dozens of journalists, were the so-called ‘specialists’. In other words, they were experts in one segment of society and represented its tensions, interests, problems. The resulting media product strongly reflected this pyramid-shaped structure which for the most part was made up of journalists. The papers and television newscasts had a strong identity and a likewise strong tendency to stress it, thus distinguishing themselves from the competition. However, things began to change at the end of the 1980s and plummeted in the last decade of the century. Editors-in-chief, co-editors, and assistant editors became the summit of structures that comprised half a dozen or more managing editors, some 15 senior editors and an even greater number of assistant senior editors. All of these people, plus the ‘news desk’ people (that is, the sub-editors who ‘capture’ news from press agencies and adapt them to the spaces of the pages or to the programme schedule */a post that was introduced only re-
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cently), handle only secondary information, which in most cases is produced outside of the editorial offices. The telematics revolution is mainly responsible for this transformation. In the early 1980s, editorial offices received not more than 400 /500 news items a day, a dozen national newscasts were available, and fax machines were cumbersome devices that were seldom used. Today, an editorial office receives some 6000/7000 news items a day on average (a number that has increased 10-fold as compared to 20 years ago), it has to take into account some 50 newscasts, is swamped with faxes, and now also e-mail and Internet messages. As a result of this truly exponential growth in incoming information, media managers are forced to make a great deal of decisions each day. The pages of a newspaper or the reports of a newscast are edited and changed in the space of a few minutes, chasing the latest possible news item in the uninterrupted spate of information that lands on the desk. The anxiety of having covered the ‘wrong’ news item and ignored the ‘right’ one is an emotional element that is ever-present in the life of the editorial office manager. This overall inflationary phenomenon */growing speed, increase in incoming information, increase in the size of the media management groups*/obviously has a price. It is a very high indeed, and one which is represented by the drop in the number of specialist editors in any editorial office across the various areas, from crime news journalists to foreign affairs experts. Competence, in other words, is being driven out of editorial offices. In turn, these offices are being transformed more and more into structures that cover secondary level information. Expertise is either expelled or else confined to supplements (finance, health, work, education, etc.) which tend to separate, in a more radical way, competence from the ‘news factory’; that is, the generalised product which goes out to the general audience (the one that actually requires a critical approach). Such a process inevitably brings down the critical threshold, which is directly proportional to the competence expressed by the editorial offices. As the level of scepticism, rationality, and criticism in information reporting drops, the
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amount of emotional involvement, self-referencing, absence of memory (how often does it occur that news items are brought back to the fore after a few months?) inevitably rises. If, indeed, the journalist’s job no longer consists of seeking out news but choosing it, then the guide, the interpretation grid, can only be the emotional one. It does not matter whether or not the news can be checked, what counts is its psychological impact. In this process of revision of the criteria and organisation of work, specialised journalists find less and less room in the Italian media. The result being that the dominant criterion in information is no longer its factual accuracy. Such a strong tendency to do away with this competence is perhaps typical of the Italian media. Anglo-Saxon, French, Spanish media products, in fact, distinguish themselves because they are strongly differentiated. Outside of Italy, the effects of the reorganisation of work described above are probably more easily found in the tabloid press and television.
6. The doctor /patient relationship How can this situation steer the behaviour of citizens and patients when it comes to making health-related choices? One does not need to refer to the Di Bella case to underline the fact that the combination of growing demand for health information by the public and an almost vertical drop in the skill base in the media that is called upon to meet this request, can have a detrimental effect. Perhaps the difficult relationship between doctor and patient is one that is most easily influenced by the misinformation spread by the media. It is like saying that between two subjects that do not communicate, a third party plays the role of troublemaker. Without denying the actual difficulty doctors and patients have in communicating, raising barely realistic expectations is certainly of no help in the effort to restore a relationship that is in crisis. For the aforementioned reasons, evidence-based medicine finds little or no support among contemporary Italian media. Yet the media, precisely for its now evident ability to steer the choices and especially the
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expectations of citizens, could play a fundamental and strategic role in disseminating accurate information on issues pertaining to health. Hopefully, as requests for information by the public and awareness of the strategic role of the media grows, health authorities will be compelled to address the issue of health care communication with greater determination and incisiveness.
7. Conclusions As the tidal wave of the Di Bella case recedes, it has left on the beach artefacts from many wrecks. But, as happens with flotsam and jetsam, there are some things worth keeping. Increased public consciousness means that it is now more difficult to provide an inadequate, remote response to public questions on health. At the end of this debacle, some modest change can be observed in Italy. For example, a major reorganisation of services for end stage oncology patients is taking place, allowing funds to be allocated to the establishment of hospices, and also for the training of specialist staff. There are also initiatives to improve dialogue between physicians and patients, and also to improve quality control procedures. However, not much has been done to improve the communication skills within health institutions, in this respect the impact of the Di Bella case has been negligible. The Italian Department of Health and the Istituto Superiore di Sanita` (the de facto national institute of health) have not published any considerations and practical evidence that could may have emerged from this experience. Two scientific papers [4,8] and two reports [9,10] of the Istituto superiore di sanita` have been published about the trials of Di Bella treatment. None of these publications has devoted any attention to the analysis of communication. Furthermore none of the press have assessed the role of the media in the Di Bella case. The inability to learn lessons about communication translates into a lack of communication strategy that may be harmful both for Italian public health institutions and the population. Between 1999 and 2001, there have been a series of additional health scares in Italy, BSE in cattle,
lipobay, depleted uranium, bio-terrorism, and even a possible risk from electromagnetic waves in Rome from the transmissions of Radio Vaticana! All these cases have been reported in the Italian media with a similar absence of objectivity and little scientific knowledge. In some cases the media representations have fuelled irrational public fears, exaggerating the possible health risks e.g. BSE, while for others concern has been generated where there is no scientific health risk e.g. Radio Vaticana. Public institutions have been unable to communicate effectively with the public to allay and address these public concerns. New opportunities for improved communication now exist through use of the Internet. Institutional web site can allow real time diffusion of information important for emergency management. These technologies have been partially utilised by public institutions but, at least in Italy, there has been no strategy on the active dissemination of information to citizens in the event of controversies in health. The media have, and probably, will have an even more decisive role to play in orientating and informing the public; they cannot be ignored. Above all, health authorities need to actively complement such information and engage with the media. One way in which this may be done is through greater use of the Internet. It is crucial however, that experts in communication management take the lead when dealing with public health scares and other controversies such as clamours to acquire new unproven technologies. They must ensure that information is accurate, clear and accessible, and deal with any misconceptions swiftly. In Italy, where there is no tradition of communication between public institutions and citizens, and where the importance of using dissemination experts has not been understood, one way forward might be the creation of a public institute for communication management. Such an institute could provide expert input to public bodies, to help them develop communication strategies which will aid in getting the message across clearly and objectively, particularly when health topics have been the subject of much media attention and public concern
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Appendix A: The scientific journalists’ appeal published in IL SOLE24ORE ‘‘While we wait for the trials and the results of the experimentation on the Di Bella method, the case */which has become an arena of clashes, polemics, quarrels and pressing arguments, but also one of entertainment, featuring interviews, opinions and counter-opinions of experts*/calls for a reflection on the quality of the information which for weeks has swamped readers and television viewers. Information needs to be balanced, competent, accurate, objective, especially when it concerns a topic like cancer, one of the nightmares of modern society. Science, and in this case medicine, generates great expectations, strong emotions and also irrational fears. Mixed feelings that can be easily manipulated by many parties. The Di Bella case has even become the ground of an ideological, institutional and political conflict. The mass media have amplified and fuelled the clash between two fronts*/left and right, official medicine and alternative or unconventional therapies, public and private health care, understood as the freedom to seek treatment according to one’s convictions */losing sight of the task to inform the public opinion correctly and shifting the focus of attention from the strictly scientific sphere to the pseudoscientific or, even worse, the political one. With few exceptions, the media have disseminated information in a programmatic way and on a large scale in contempt of the knowledge of the issues and data. This gives rise to great concerns as to its self-awareness as a tool of democracy. Especially when it deals with an area that is directly linked with the fundamental right of every citizen to know, have the possibility to evaluate and thus make a choice. Here are some points for reflection and principles on which we want to open a discussion. Every piece of information concerning a scientific issue must clearly indicate the factual elements and the sources it refers to, favouring as much as possible the distinction between existing data and opinions. Information must not confuse science with faith and hopes with facts, which is the essence of journalism. And this also applies to opinion leaders.
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Journalists */not just scientific ones*/must ‘understand before writing’ and acquire verification tools. Oftentimes, due to the lack of time, laziness, arrogance or other reasons, one fails to investigate further. The quality of information must not be neglected for the sake of ‘securing a scoop’ or be used to fuel emotions and illusions, when the topic covered concerns health and the lives of human beings are at stake. An article requiring adequate competence is to be entrusted to an expert journalist. In the scientific field, instead, one feels one is entitled to volunteer opinions. No editor-in-chief would ever dream of assigning an article on finance or foreign affairs or sports to a journalist who is not an expert in those fields. It is the duty of the members of the scientific community to inform the mass media in a regular and accurate way. Just as it is up to the doctor to establish personally a relationship with the patient that is based on regular and comprehensible communication and information. The responsibility for poor information falls on both the journalists who write and the editors-inchief who decide what approach and what contents to give to the article, which they often do more on the basis of editorial and ideological choices than on the basis of an actual knowledge of facts. On delicate issues that kindle hope and expectations it is necessary to engage in an ample discussion and a collegial debate involving also different competencies. Instead, newspapers often give little or no space to the discussion of ideas and the analysis of facts. The right to report cannot avoid taking stock of facts, the documentation collected and the context in which they occur. The press would be more credible if it dedicated constant and active attention to the ‘phenomena’ of health care (and mismanagement thereof) and did not merely step in when sensational cases occur. Scientific journalists must overstep the specialist bounds and face the moral and social dilemmas posed by contemporary science, going beyond the confines of mere news or discovery. It is best to focus on the two cornerstones of scientific thinking: a critical attitude (which is
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useful in order to discern between true and false and not to give in to the temptation to believe what one wishes to be true) and curiosity (which feeds on scientific research), rather than providing entertainment news. Once the sensation dies down and the Di Bella case is deflated, the press has the moral duty to keep readers updated on the results and developments of the experimentation and on their meaning. Making a treatment available just to ease anxieties and polemics is one thing, seriously testing the effectiveness and safety of a protocol is quite another matter. Newspaper editors-in-chief must commit themselves as of now to provide accurate information on the different stages of experimentation, without manipulating what is going to surface gradually and reporting the facts, in respect of the democratic principles that must inspire the right of citizens to be informed. We ask the scientific community and the members of the Oncology Commission for transparency in communicating the results of the experimentation under way.’’
References [1] Osservatorio della comunicazione radiotelevisiva di Pavia. Il caso Di Bella nella televisione e nella stampa italiana. Roma: RAI-ERI, 1999.
[2] Traversa G, Maggini M, Menniti-Ippolito F, Bruzzi P, Chiarotti F, Greco D, Spila-Alegiani S, Raschetti R, Benagiano G. The Di Bella unconventional cancer treatment: a reflection on the Italian experience. Cancer 1999;86:1903 /11. [3] Government of Italy. DL n. 23 del 17 febbraio 1998 */ Disposizioni urgenti in materia di sperimentazioni cliniche in campo oncologico e altre misure in materia sanitaria. G.U. n. 39 del 17 febbraio 1998. [4] Italian Study Group for the Di Bella Multitherapy Trials. Evaluation of an unconventional cancer treatment (the Di Bella Multitherapy): results of phase II trials in Italy. British Medical Journal 1999;318:224 /8. [5] Government of Italy. Disposizioni urgenti per l’erogazione gratuita di medicinali antitumorali in corso di sperimentazione clinica, in attuazione della sentenza della Corte Costituzionale n. 185 del 26 maggio 1998. Decreto Legge 16 giugno 1998, n. 186. [6] Passalacqua R, Campione F, Caminiti C, Salvagni S, Barilli A, Bella M, Barni S, Barsanti G, Caffo O, Carlini P, Cinquemani P, Di Costanzo F, Giustini L, Labianca R, Mazzei A, Olmeo N, Paccagnella A, Toscano L, Cocconi G. Patients’ opinions, feelings, and attitudes after a campaign to promote the Di Bella therapy. Lancet 1999;353:1310 /4. [7] Bassoli R. Emozioni versus competenze. Le logiche della comunicazione nei mass media. Annali Istituto Superiore di Sanita` 1999;35(4):543 /6. [8] The Unconventional Di Bella Cancer Treatment. Cancer 1999;86(10):1903 /1911. [9] Risultati della sperimentazione del Multitrattamento Di Bella (Protocolli 4, 6, 8, 10). Rapporti Istisan 98/17. [10] Risultati della sperimentazione del Multitrattamento Di Bella (Protocolli 1, 3, 5, 7, 9, Follow up dei protocolli 4, 6, 8, 10). Rapporti Istisan 98/24.
The role of the media in steering public opinion on healthcare issues Eva Benelli * ZADIG-ROMA, Agenzia di Gionalismo Scientifico, ZADIG Roma srl, Via Monte Cristallo 6, 00141 Rome, Italy Received 28 October 2001; accepted 26 March 2002
Abstract The media can play an important role in influencing both the demand and supply of medical treatments, regardless of evidence of effectiveness. This can be highlighted by recent experiences in Italy following publicity for a new unproven treatment in Italy, which it was claimed was highly successful in treating a wide range of cancers. The media role in influencing both health authorities to fund large scale trials of the intervention and patients awareness and expectations of therapy are discussed. The changes in Italian media over the last 20 years have seen a reduction in the numbers of specialist medical journals, with increased emphasis placed on sensationalism rather than accuracy. The media though has the potential to play in future an important strategic role in disseminating accurate information on issues pertaining to health. # 2002 Published by Elsevier Science Ireland Ltd. Keywords: Media; Italy; Public opinion; Evidence based medicine; Cancer treatment
1. Introduction In 1998, the Italian health authorities had to face a storm that raged throughout the entire year and which still causes a stir some 2 years later, the Di Bella case. It was a dramatic experience, which left a strong mark on relations between citizens and institutions, changed the way of thinking of many researchers and health officials, and repre-
* Tel.: /39-06-817-5644; fax: /39-06-817-6140 E-mail address: [email protected] (E. Benelli).
sented an alarming sign of the power of the media to steer public opinion in matters pertaining to health. In the last months of 1997, an elderly physiologist from Modena, Professor Luigi Di Bella, made the headlines. He claimed that he had developed a treatment against cancer that is viable, effective and produces no side effects. All types of tumours could be treated, all patients could find new hope thanks to the treatment that he proposes. Indeed, in 20 years he argued at least 10,000 patients have been cured thanks to this method. The only flaw was its cost. The treatment required
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substantial out-of-pocket payment by the patient. Soon, the proposition that the Di Bella method should be reimbursed under the Italian National Health System became the battle cry of the growing numbers of supporters for the physiologist from Modena. Patients’ associations cropped up and organised protests, both in the streets and through the media. Supporters of the professor appeared regularly on television, first on programmes dealing with health, then on more generalist talk-shows. A private radio station totally embraced the Di Bella cause. It steered patients, regularly broadcast interviews with the professor’s followers, and even served as a ‘grapevine’ for a mounting protest against the health authorities who were deemed ‘guilty’ of demanding useless validations of the therapy. The media on the whole sided openly with the professor [1]. Only after a few months did the more responsible press begin to change tone and attitude. However, almost a year passed before television took a more cautious stance, though without ever being totally convinced. In May 2000 for instance, television shows were aired on national networks which re-proposed the professor’s protocol.
2. Media influence on decision makers The impact of the media on the country was devastating. Patients actually seeking the treatment have never been more than a few thousand of the total one and a half million cancer patients in Italy [2]. Yet their voice, amplified by the media, finally managed to insist on an assessment of the treatment, something which the health authorities had earlier refused to do in the absence of convincing arguments. The paradox lies in the fact that the supporters of the Di Bella method soon lost interest in the validation tests, which were destined to reveal the ineffectiveness of the Di Bella method. Through the media hype, the Ministry of Health and the Higher Board for Health became convinced that the authority responsible for managing health policies had no choice other than to proceed with the review [3]. The health authority could not
fail to heed the call of even just the patients who do use the treatment */be they a few thousand */ not to mention that of the wider public opinion which, though poorly informed, wanted to know more. Evaluation therefore became the only way to provide Italian citizens with a clear indication as to whether the therapy was effective. Basically, it was a choice that had more to do with politics and health management than with scientific rigour. The opinions of researchers at this point began to clash. Some, who were initially against assessment, converted to health care pragmatism. Others remain convinced that the evaluation should never have been conducted. The final direct costs of the case exceeded 50 billion lire, (a25.8 million). The indirect costs are probably much higher. This is a huge sum, especially considering the meagre budget allocated for scientific research in Italy. But once again the media played an important role in this expenditure. The costs of the research testing and of the observation study that accompanied it, were slightly below two billion lire (a1.033 million) [4]. The bulk of expenses were consequential of a decision taken by the Constitutional Court, the supreme Italian institutional consultative body [5]. The Court established that no discrimination was to be allowed against patients excluded from the validation study, and that therefore they too were entitled to receive the drug free of charge for as long as the experimentation lasted. This represented a singular reversal of the rationale where it is the patients who are involved in a clinical study that have to be protected */for the obvious risks they are exposed to*/and not the ones who are excluded! But would things ever have gone this far without the media campaign, which in actual fact promoted the Di Bella therapy long before the review got under way?
3. Media influence on patients To what extent did the patients in favour of the cancer treatment proposed by Professor Di Bella formulate their convictions on the basis of the information delivered by the press and, in particular, by television? An interesting answer is
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provided by a study which was co-ordinated by Rodolfo Passalacqua and Renata Todeschini of the oncology department at the Parma hospital [6]. The study involved 13 oncology centres scattered across the country between 25 February and 31 March 1998, precisely when the public was being told (on a daily basis and with very few contrasting opinions) that Di Bella therapy was not only sure to treat virtually all tumours, but in fact represented a successful long-term outcome. For 5 days in a row, the researchers distributed a questionnaire with 10 multiple-choice questions to all the patients who visited the oncology centres. Of the 1300 tests handed out, almost 90% were analysed and validated by the Verona oncology centre. As was to be expected, the vast majority of patients stated that they knew about the Di Bella protocol (85% of interviewees) and had drawn their information from the media. Television and radio stations represented the main source of information, with 62% of interviewees, citing these as the main media. Newspapers and other printed media were slightly behind (only 26% of patients stated that they got information from this source). Doctors were rarely contacted */not more than 5% of the patients interviewed said they had talked about therapies with their physician. The impact of the media campaign was therefore considerable. Patients had a very positive impression of the effectiveness of the Di Bella method: only 1% judged it ineffective compared with 42% who judged it positively and 57% who considered its outcome uncertain. In more than half of the cases examined (53%) the hope was for full recovery, against 46% who were not completely convinced and 1% who considered the chances of recovering lower. These results should make us reflect on another effect */which is by no means secondary to the press campaign staged around the Di Bella case: disorientation. Patients did not receive the accurate information they were entitled to, but nor did they receive precise information either. Indeed, more than half the patients admitted that they felt more confused and unsure than before the media campaign. The coverage of the Di Bella case by the Italian and international media was a truly significant experience. Perhaps, at the end of the last century,
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it was the one case that was most indicative of the ability of the media to steer public opinion vis-a`vis a proposed therapy, a choice of health care policy or simply regarding research direction. However, taking stock of the media’s power to influence is just one aspect of a reflection on its role in society. Equally important is the attempt to evaluate which rationale and mechanisms determine the choices of the media in terms of how to cover a news item or, as with the Di Bella case, an event that evolves over time.
4. Media interest in medicine The Italian media adore issues pertaining to health and medicine. In just a few years dozens of specialised newspaper and magazine inserts have cropped up, while news regarding health, medical therapies and disorders receive much more coverage than they did 15 years ago. National television has even chosen to air a long programme on medicine during primetime, as an alternative to Sunday night sports shows. However, if on the one hand the slots dedicated to health and medicine have increased, on the other hand, the competent professional figures (specialised journalists in particular) have decreased in the editorial offices of newspapers, news broadcasters and even press agencies. This contradiction generates another one. In newspapers, magazines, television (and radio) broadcasts, news regarding medicine, health and science are ever more present, but in a way that is inversely proportional to the critical function exercised by journalists. ‘Scientists have said’ is becoming the only form of accreditation deemed necessary. And, what is more, scientists are seen as one category, within the framework of which there is no internal debate and no doubts exist. Such an attitude reflects a considerable degree of indifference towards the reliability of medical and scientific news and indeed the news source itself. Hence, in the Italian media scientifically proven therapies enjoy the same respect as the ‘alternative’, folk, and metaphysical ones. One seldom comes across even a single attempt to offer a critical contribution. The journalist makes no
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effort to interpret, filter, comment, raise doubts. In essence, scepticism is banned. Unfortunately, even when */as in the Di Bella case or other delicate situations (for instance the recurring ‘awakenings’ from comas which always have repercussions on organ donation) */it would be indispensable to inform citizens with meticulous rationality, what usually happens in the editorial offices of the Italian media, is that the few journalists who are competent in medical /scientific matters tend to be isolated. The phenomenon is so deeply ingrained that, in the first months of the Di Bella case, some 30 journalists specialising in medical /scientific issues, plus some exponents of the scientific approach, launched an appeal which was published in the daily newspaper Il Sole24Ore to complain about this type of news coverage (see Appendix A). In the appeal, the signatories wrote: While we wait for the trials and the results of the experimentation on the Di Bella method, the case calls for a reflection on the quality of the information, which for weeks has swamped readers and television viewers. Information needs to be balanced, competent, accurate, objective, especially when it concerns a topic like cancer, one of the nightmares of modern society . . . The mass media have amplified and fuelled the clash between two fronts */left and right, official medicine and alternative or unconventional therapies, public and private health care, understood as the freedom to seek treatment according to one’s convictions. [This] looses sight of the task of informing public opinion correctly and avoiding shifting the focus of attention from a strictly scientific sphere to a pseudoscientific or, even worse, political perspective. The appeal, which was also published at the height of the Di Bella case in a couple of national newspapers and some specialised magazines, did not succeed in changing the course of events, neither then nor later with regard to other dramatic events involving public health. On the contrary, the more public interest for health-
related issues has grown, the more competent journalists have dropped out of the picture.
5. The media and the mechanisms underpinning the ‘production’ of news In order to understand the root cause of this change, it is necessary to look at how the organisation of the work and the cultural profiles of media editorial offices changed during the 1980s and 1990s [7]; especially, though not exclusively, within the Italian media. An editorial office comprises management, which consists of one or more editors-in-chief (the ‘political mind’); a chief managing editor and several other managing editors (they run the paper/journal directly, transforming the fundamental ideas into pages and headlines and choosing the most important items to publish); senior editors (one for each thematic area into which the office is divided i.e. domestic politics, Italian news, foreign affairs, finance, sports, and culture, etc.); and lastly the editorial staff. At the end of the 1970s, the editor-in-chief, the managing editor (with a couple of deputies) and not more than 10 senior editors were the only infrastructure running the newspapers. The rest, dozens and dozens of journalists, were the so-called ‘specialists’. In other words, they were experts in one segment of society and represented its tensions, interests, problems. The resulting media product strongly reflected this pyramid-shaped structure which for the most part was made up of journalists. The papers and television newscasts had a strong identity and a likewise strong tendency to stress it, thus distinguishing themselves from the competition. However, things began to change at the end of the 1980s and plummeted in the last decade of the century. Editors-in-chief, co-editors, and assistant editors became the summit of structures that comprised half a dozen or more managing editors, some 15 senior editors and an even greater number of assistant senior editors. All of these people, plus the ‘news desk’ people (that is, the sub-editors who ‘capture’ news from press agencies and adapt them to the spaces of the pages or to the programme schedule */a post that was introduced only re-
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cently), handle only secondary information, which in most cases is produced outside of the editorial offices. The telematics revolution is mainly responsible for this transformation. In the early 1980s, editorial offices received not more than 400 /500 news items a day, a dozen national newscasts were available, and fax machines were cumbersome devices that were seldom used. Today, an editorial office receives some 6000/7000 news items a day on average (a number that has increased 10-fold as compared to 20 years ago), it has to take into account some 50 newscasts, is swamped with faxes, and now also e-mail and Internet messages. As a result of this truly exponential growth in incoming information, media managers are forced to make a great deal of decisions each day. The pages of a newspaper or the reports of a newscast are edited and changed in the space of a few minutes, chasing the latest possible news item in the uninterrupted spate of information that lands on the desk. The anxiety of having covered the ‘wrong’ news item and ignored the ‘right’ one is an emotional element that is ever-present in the life of the editorial office manager. This overall inflationary phenomenon */growing speed, increase in incoming information, increase in the size of the media management groups*/obviously has a price. It is a very high indeed, and one which is represented by the drop in the number of specialist editors in any editorial office across the various areas, from crime news journalists to foreign affairs experts. Competence, in other words, is being driven out of editorial offices. In turn, these offices are being transformed more and more into structures that cover secondary level information. Expertise is either expelled or else confined to supplements (finance, health, work, education, etc.) which tend to separate, in a more radical way, competence from the ‘news factory’; that is, the generalised product which goes out to the general audience (the one that actually requires a critical approach). Such a process inevitably brings down the critical threshold, which is directly proportional to the competence expressed by the editorial offices. As the level of scepticism, rationality, and criticism in information reporting drops, the
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amount of emotional involvement, self-referencing, absence of memory (how often does it occur that news items are brought back to the fore after a few months?) inevitably rises. If, indeed, the journalist’s job no longer consists of seeking out news but choosing it, then the guide, the interpretation grid, can only be the emotional one. It does not matter whether or not the news can be checked, what counts is its psychological impact. In this process of revision of the criteria and organisation of work, specialised journalists find less and less room in the Italian media. The result being that the dominant criterion in information is no longer its factual accuracy. Such a strong tendency to do away with this competence is perhaps typical of the Italian media. Anglo-Saxon, French, Spanish media products, in fact, distinguish themselves because they are strongly differentiated. Outside of Italy, the effects of the reorganisation of work described above are probably more easily found in the tabloid press and television.
6. The doctor /patient relationship How can this situation steer the behaviour of citizens and patients when it comes to making health-related choices? One does not need to refer to the Di Bella case to underline the fact that the combination of growing demand for health information by the public and an almost vertical drop in the skill base in the media that is called upon to meet this request, can have a detrimental effect. Perhaps the difficult relationship between doctor and patient is one that is most easily influenced by the misinformation spread by the media. It is like saying that between two subjects that do not communicate, a third party plays the role of troublemaker. Without denying the actual difficulty doctors and patients have in communicating, raising barely realistic expectations is certainly of no help in the effort to restore a relationship that is in crisis. For the aforementioned reasons, evidence-based medicine finds little or no support among contemporary Italian media. Yet the media, precisely for its now evident ability to steer the choices and especially the
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expectations of citizens, could play a fundamental and strategic role in disseminating accurate information on issues pertaining to health. Hopefully, as requests for information by the public and awareness of the strategic role of the media grows, health authorities will be compelled to address the issue of health care communication with greater determination and incisiveness.
7. Conclusions As the tidal wave of the Di Bella case recedes, it has left on the beach artefacts from many wrecks. But, as happens with flotsam and jetsam, there are some things worth keeping. Increased public consciousness means that it is now more difficult to provide an inadequate, remote response to public questions on health. At the end of this debacle, some modest change can be observed in Italy. For example, a major reorganisation of services for end stage oncology patients is taking place, allowing funds to be allocated to the establishment of hospices, and also for the training of specialist staff. There are also initiatives to improve dialogue between physicians and patients, and also to improve quality control procedures. However, not much has been done to improve the communication skills within health institutions, in this respect the impact of the Di Bella case has been negligible. The Italian Department of Health and the Istituto Superiore di Sanita` (the de facto national institute of health) have not published any considerations and practical evidence that could may have emerged from this experience. Two scientific papers [4,8] and two reports [9,10] of the Istituto superiore di sanita` have been published about the trials of Di Bella treatment. None of these publications has devoted any attention to the analysis of communication. Furthermore none of the press have assessed the role of the media in the Di Bella case. The inability to learn lessons about communication translates into a lack of communication strategy that may be harmful both for Italian public health institutions and the population. Between 1999 and 2001, there have been a series of additional health scares in Italy, BSE in cattle,
lipobay, depleted uranium, bio-terrorism, and even a possible risk from electromagnetic waves in Rome from the transmissions of Radio Vaticana! All these cases have been reported in the Italian media with a similar absence of objectivity and little scientific knowledge. In some cases the media representations have fuelled irrational public fears, exaggerating the possible health risks e.g. BSE, while for others concern has been generated where there is no scientific health risk e.g. Radio Vaticana. Public institutions have been unable to communicate effectively with the public to allay and address these public concerns. New opportunities for improved communication now exist through use of the Internet. Institutional web site can allow real time diffusion of information important for emergency management. These technologies have been partially utilised by public institutions but, at least in Italy, there has been no strategy on the active dissemination of information to citizens in the event of controversies in health. The media have, and probably, will have an even more decisive role to play in orientating and informing the public; they cannot be ignored. Above all, health authorities need to actively complement such information and engage with the media. One way in which this may be done is through greater use of the Internet. It is crucial however, that experts in communication management take the lead when dealing with public health scares and other controversies such as clamours to acquire new unproven technologies. They must ensure that information is accurate, clear and accessible, and deal with any misconceptions swiftly. In Italy, where there is no tradition of communication between public institutions and citizens, and where the importance of using dissemination experts has not been understood, one way forward might be the creation of a public institute for communication management. Such an institute could provide expert input to public bodies, to help them develop communication strategies which will aid in getting the message across clearly and objectively, particularly when health topics have been the subject of much media attention and public concern
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Appendix A: The scientific journalists’ appeal published in IL SOLE24ORE ‘‘While we wait for the trials and the results of the experimentation on the Di Bella method, the case */which has become an arena of clashes, polemics, quarrels and pressing arguments, but also one of entertainment, featuring interviews, opinions and counter-opinions of experts*/calls for a reflection on the quality of the information which for weeks has swamped readers and television viewers. Information needs to be balanced, competent, accurate, objective, especially when it concerns a topic like cancer, one of the nightmares of modern society. Science, and in this case medicine, generates great expectations, strong emotions and also irrational fears. Mixed feelings that can be easily manipulated by many parties. The Di Bella case has even become the ground of an ideological, institutional and political conflict. The mass media have amplified and fuelled the clash between two fronts*/left and right, official medicine and alternative or unconventional therapies, public and private health care, understood as the freedom to seek treatment according to one’s convictions */losing sight of the task to inform the public opinion correctly and shifting the focus of attention from the strictly scientific sphere to the pseudoscientific or, even worse, the political one. With few exceptions, the media have disseminated information in a programmatic way and on a large scale in contempt of the knowledge of the issues and data. This gives rise to great concerns as to its self-awareness as a tool of democracy. Especially when it deals with an area that is directly linked with the fundamental right of every citizen to know, have the possibility to evaluate and thus make a choice. Here are some points for reflection and principles on which we want to open a discussion. Every piece of information concerning a scientific issue must clearly indicate the factual elements and the sources it refers to, favouring as much as possible the distinction between existing data and opinions. Information must not confuse science with faith and hopes with facts, which is the essence of journalism. And this also applies to opinion leaders.
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Journalists */not just scientific ones*/must ‘understand before writing’ and acquire verification tools. Oftentimes, due to the lack of time, laziness, arrogance or other reasons, one fails to investigate further. The quality of information must not be neglected for the sake of ‘securing a scoop’ or be used to fuel emotions and illusions, when the topic covered concerns health and the lives of human beings are at stake. An article requiring adequate competence is to be entrusted to an expert journalist. In the scientific field, instead, one feels one is entitled to volunteer opinions. No editor-in-chief would ever dream of assigning an article on finance or foreign affairs or sports to a journalist who is not an expert in those fields. It is the duty of the members of the scientific community to inform the mass media in a regular and accurate way. Just as it is up to the doctor to establish personally a relationship with the patient that is based on regular and comprehensible communication and information. The responsibility for poor information falls on both the journalists who write and the editors-inchief who decide what approach and what contents to give to the article, which they often do more on the basis of editorial and ideological choices than on the basis of an actual knowledge of facts. On delicate issues that kindle hope and expectations it is necessary to engage in an ample discussion and a collegial debate involving also different competencies. Instead, newspapers often give little or no space to the discussion of ideas and the analysis of facts. The right to report cannot avoid taking stock of facts, the documentation collected and the context in which they occur. The press would be more credible if it dedicated constant and active attention to the ‘phenomena’ of health care (and mismanagement thereof) and did not merely step in when sensational cases occur. Scientific journalists must overstep the specialist bounds and face the moral and social dilemmas posed by contemporary science, going beyond the confines of mere news or discovery. It is best to focus on the two cornerstones of scientific thinking: a critical attitude (which is
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useful in order to discern between true and false and not to give in to the temptation to believe what one wishes to be true) and curiosity (which feeds on scientific research), rather than providing entertainment news. Once the sensation dies down and the Di Bella case is deflated, the press has the moral duty to keep readers updated on the results and developments of the experimentation and on their meaning. Making a treatment available just to ease anxieties and polemics is one thing, seriously testing the effectiveness and safety of a protocol is quite another matter. Newspaper editors-in-chief must commit themselves as of now to provide accurate information on the different stages of experimentation, without manipulating what is going to surface gradually and reporting the facts, in respect of the democratic principles that must inspire the right of citizens to be informed. We ask the scientific community and the members of the Oncology Commission for transparency in communicating the results of the experimentation under way.’’
References [1] Osservatorio della comunicazione radiotelevisiva di Pavia. Il caso Di Bella nella televisione e nella stampa italiana. Roma: RAI-ERI, 1999.
[2] Traversa G, Maggini M, Menniti-Ippolito F, Bruzzi P, Chiarotti F, Greco D, Spila-Alegiani S, Raschetti R, Benagiano G. The Di Bella unconventional cancer treatment: a reflection on the Italian experience. Cancer 1999;86:1903 /11. [3] Government of Italy. DL n. 23 del 17 febbraio 1998 */ Disposizioni urgenti in materia di sperimentazioni cliniche in campo oncologico e altre misure in materia sanitaria. G.U. n. 39 del 17 febbraio 1998. [4] Italian Study Group for the Di Bella Multitherapy Trials. Evaluation of an unconventional cancer treatment (the Di Bella Multitherapy): results of phase II trials in Italy. British Medical Journal 1999;318:224 /8. [5] Government of Italy. Disposizioni urgenti per l’erogazione gratuita di medicinali antitumorali in corso di sperimentazione clinica, in attuazione della sentenza della Corte Costituzionale n. 185 del 26 maggio 1998. Decreto Legge 16 giugno 1998, n. 186. [6] Passalacqua R, Campione F, Caminiti C, Salvagni S, Barilli A, Bella M, Barni S, Barsanti G, Caffo O, Carlini P, Cinquemani P, Di Costanzo F, Giustini L, Labianca R, Mazzei A, Olmeo N, Paccagnella A, Toscano L, Cocconi G. Patients’ opinions, feelings, and attitudes after a campaign to promote the Di Bella therapy. Lancet 1999;353:1310 /4. [7] Bassoli R. Emozioni versus competenze. Le logiche della comunicazione nei mass media. Annali Istituto Superiore di Sanita` 1999;35(4):543 /6. [8] The Unconventional Di Bella Cancer Treatment. Cancer 1999;86(10):1903 /1911. [9] Risultati della sperimentazione del Multitrattamento Di Bella (Protocolli 4, 6, 8, 10). Rapporti Istisan 98/17. [10] Risultati della sperimentazione del Multitrattamento Di Bella (Protocolli 1, 3, 5, 7, 9, Follow up dei protocolli 4, 6, 8, 10). Rapporti Istisan 98/24.