Communicating the Harms and Benefits of Medical Treatments: a look from both sides of the aisle… Prepared by michael wilkes and richard kravitz

We learn about medicine through the media Press coverage is too often inaccurate, superficial, or sensationalized. Press coverage is too often inaccurate, superficial, or sensationalized. Some of the most important medical issues are not covered Some of the most important medical issues are not covered Inaccurate reporting can generate false hopes and unwarranted fears. Inaccurate reporting can generate false hopes and unwarranted fears. Need to recognize the limitations of language Need to recognize the limitations of language Human beings are not good at statistical reasoning Human beings are not good at statistical reasoning –Very difficult to communicate about very low risks, small differences between risks, and uncertainty around risks

Public Expectations Public believes that “newer is better” and “more is better” Public believes that “newer is better” and “more is better” Public wants to believe the hype they hear from manufacturers, doctors, hospitals and journals; Public wants to believe the hype they hear from manufacturers, doctors, hospitals and journals; Public believes promotions about health and believes it is held to a higher standard than say Volvo ads or coke ads Public believes promotions about health and believes it is held to a higher standard than say Volvo ads or coke ads

Deyo’s common myths about the media’s coverage of health: Standard care is well defined Standard care is well defined Newer is always better Newer is always better Doctors adopt medical advances only on the basis of good science Doctors adopt medical advances only on the basis of good science Medical test are always good – how can information be bad? Medical test are always good – how can information be bad? Getting tested to detect cancer early is one of the best ways to stay healthy--or is it? Getting tested to detect cancer early is one of the best ways to stay healthy--or is it?

Conceptual framework and flow of media information Communication is the process by which information is transferred from a source to a receiver. Communication is the process by which information is transferred from a source to a receiver. SMCR model which involves a source sending a message via different channels to the receivers). SMCR model which involves a source sending a message via different channels to the receivers). Source message channels receiver Source message channels receiver

Chain of medical information Starts with a source (scientist) Starts with a source (scientist) Norms usually dictate that "peers" are the first to receive new information Norms usually dictate that "peers" are the first to receive new information Professional organizations are the next in the chain Professional organizations are the next in the chain –usually disseminated via medical journals, meetings or society news letters, government reports, detail people and word of mouth. The news media then receives the information (through the above sources or through press releases) The news media then receives the information (through the above sources or through press releases) At the media source an editorial decision is made about the appropriateness of the material for the public. At the media source an editorial decision is made about the appropriateness of the material for the public.

In the news room… If selected, the material is assigned to a journalist who translates and explains it to the public. If selected, the material is assigned to a journalist who translates and explains it to the public. The final step is the reader who selectively chooses what to engage with The final step is the reader who selectively chooses what to engage with

Smooth Communication In order for the communication chain to function with any degree of sophistication each link must be compatible with adjacent links. In order for the communication chain to function with any degree of sophistication each link must be compatible with adjacent links. In medicine, the problems involve two primary forces – In medicine, the problems involve two primary forces – –the medical research community (researchers, institutions, clinicians) and –the journalism community (journalists, editors, and publishers).

Problems with communication The interaction of these two groups has effected the timely and accurate dissemination of medical research to the general public. The interaction of these two groups has effected the timely and accurate dissemination of medical research to the general public. There are three controversial barriers to the dissemination of medical information There are three controversial barriers to the dissemination of medical information – peer review, –journal editorial policy (the Ingelfinger Rule), –and the news embargo.

Examples of getting it wrong…. The public is poorly served by the coverage of medical science in the general press: The public is poorly served by the coverage of medical science in the general press: –Hospitals promoted knee arthroscopy centers to patients with arthritis. Only to find that a clever RCT showed the procedure to be no better than a sham operation –HealthNet gets sued, and loses, for not providing BMT coverage to women with late stage breast cancer. They argue that the treatment was never proven effective. The press coverage of the trial paints HealthNet as a big boogieman that is careless and cheap with regard to women dying of breast cancer.

More examples… In Aug (2006) Cathy DeAngelis wrote an editorial, “The influence of money on medical science” In Aug (2006) Cathy DeAngelis wrote an editorial, “The influence of money on medical science” –In it she admitted to several failures by authors to disclose conflicts of interest. –She also announced that industry funded studies would need to hire independent outside data analysts to give an added layer to peer review. –There were also claims that in response, industry pushed their funded researchers boycott JAMA.

More examples… The government has no central data base of IRBs, despite a proposed rule requiring registration in The government has no central data base of IRBs, despite a proposed rule requiring registration in –The field is ripe with for-profit IRBs that are affiliated with for profit contract research institutions;

More examples…. In 1998 researchers thought they hit the mother-load with data suggesting that tamoxifen, used to treat breast cancer, could actually prevent it in 50% of women. In 1998 researchers thought they hit the mother-load with data suggesting that tamoxifen, used to treat breast cancer, could actually prevent it in 50% of women. –despite being widely covered by the press, the promise never panned out. The side effects – hot flashes and other menopause-like symptoms, increased rates of uterine cancer and blood clots – outweighed the slight benefits; –In April 2006 the NCI again promised a new drug to prevent breast cancer – raloxifene –  claimed it had fewer side effects  claimed it could prevent 2 million cases of breast cancer.  raloxifene is already used to prevent bone loss after menopause  NCI used relative risk reductions in their promotion rather than absolute risk reductions  At the press release and conference call no data was given to scientists or reporters and it had not been published in a journal.

Blaming the press… Scientists and physicians blame the press Scientists and physicians blame the press Claim reporters are careless about how they present medical research. Claim reporters are careless about how they present medical research. Claim ignorant of the scientific process Claim ignorant of the scientific process Claim competition between journalists limits accuracy and depth Claim competition between journalists limits accuracy and depth

Blaming the scientists Journalists accuse the medical community of: Journalists accuse the medical community of: Obstructing, misguiding, or failing to alert the press to important details; Obstructing, misguiding, or failing to alert the press to important details; Being competitive about media coverage Being competitive about media coverage Failing to disclose conflicts Failing to disclose conflicts Protecting those who do not work to promote accurate reporting Protecting those who do not work to promote accurate reporting Not being able or willing to speak in plain English Not being able or willing to speak in plain English

Both parties share the responsibility for accurate communication to the public. Both parties share the responsibility for accurate communication to the public.

Sensationalism Too often, journalists pursue medical news as if they are reporting on a hostage crisis. Too often, journalists pursue medical news as if they are reporting on a hostage crisis. Information is delivered rapidly, but little time is taken to provide a context for the story. Information is delivered rapidly, but little time is taken to provide a context for the story. Instead, the reporting is sensationalized: Instead, the reporting is sensationalized:

Sensationalism continued… –The journalist overstates a scientific finding –scientists and scientific institutions contribute to sensationalism.  Scientists have understandable desires for publicity: –Helps them get funding –is valued by institutions –efforts of scientists to attract media attention, however, can result in flawed coverage.  press releases are issued that are inaccurate or incomplete  press conferences are held even though the data being discussed are preliminary.  Scientific organizations invite the media to their presentations without providing explanations of epidemiologic and statistical concepts or access to scientists

Bayesian Reporting We’d all be better off if the media took the same approach to new research as the wise clinician -- in a Bayesian framework. We’d all be better off if the media took the same approach to new research as the wise clinician -- in a Bayesian framework. –Examine what was known before, evaluate the strength of the new information, form tentative conclusions, make an informed decision pending better (more definitive information)

Negative Studies (-) –Media and the medical community against negative studies;  The media do not mention negative studies, perhaps because they seem to be inconsequential;  This omission is then compounded because medical journals, who place an extremely high value on media coverage, are less likely to publish studies that have negative results;  scientists are less likely to submit them for publication.

Biases and Conflicts of interest reporters need to examine the credibility and biases of scientific sources. reporters need to examine the credibility and biases of scientific sources. –Reporters are misled when the public relations efforts of scientists, institutions, or the pharmaceutical industry turn into blatant boosterism. –The Press Release –Medical news reporters being barraged by press kits and other materials from corporate sources, academic institutions, medical journals, and professional organizations –These materials can be misleading and even deceptive, sometimes amounting to nothing more than sensationalism.

Access to Scientists The major sources for a reporter's story on a research article or presentation are generally the authors or presenters themselves. The major sources for a reporter's story on a research article or presentation are generally the authors or presenters themselves. –Reporters who wish to verify such stories, however, should also speak to persons who can criticize the work.

Disclosing Conflicts of Interest A journalist's audience should be told explicitly whether the journalist's source of information could benefit financially from the media attention or whether the source is funded or employed by an institution that will benefit. A journalist's audience should be told explicitly whether the journalist's source of information could benefit financially from the media attention or whether the source is funded or employed by an institution that will benefit. –such conflicts of interest are often not apparent to reporters or their audiences; –Reporters have become more aware of conflicts of interest because of policies of medical journals that require conflicts to be revealed.

Public Relations Disguises Several recent incidents raise concern about the extent to which the press is misled by industry-sponsored comments that are disguised as the objective views of a physician or scientist. Several recent incidents raise concern about the extent to which the press is misled by industry-sponsored comments that are disguised as the objective views of a physician or scientist.

Lack of Follow-up The public is generally unaware of the scientific process The public is generally unaware of the scientific process Journalist have a responsibility to help explain the scientific process. Journalist have a responsibility to help explain the scientific process. Journalists should spend more time following ongoing stories and returning to subjects that were first covered when only preliminary findings were available. Journalists should spend more time following ongoing stories and returning to subjects that were first covered when only preliminary findings were available.

Complex terminology E.g.,meta-analysis, E.g.,meta-analysis, writing is poor writing is poor the scientific meaning of certain words is different than their common usage (negative study); the scientific meaning of certain words is different than their common usage (negative study);

Stories That Are Not Covered Narrow Focus on a few journals Narrow Focus on a few journals Journalists have been criticized for having a limited focus; Journalists have been criticized for having a limited focus; Each week, medical reporters feel obliged to glance at the lead articles or press releases from only three or four peer-reviewed journals; Each week, medical reporters feel obliged to glance at the lead articles or press releases from only three or four peer-reviewed journals; This sense of obligation to cover particular articles can discourage reporters from following an area of research, a process that might involve contacting scientists, scanning specialty journals, or reading papers other than lead articles. This sense of obligation to cover particular articles can discourage reporters from following an area of research, a process that might involve contacting scientists, scanning specialty journals, or reading papers other than lead articles.

Information That Is Withheld or Not Explained Issues sometimes go unreported in the media because the medical community does not want to discuss problems publicly or fears that journalists will not understand the issues; Issues sometimes go unreported in the media because the medical community does not want to discuss problems publicly or fears that journalists will not understand the issues; Corporate Pressures To Remain Quiet Corporate Pressures To Remain Quiet

Journal Pressures Control Dissemination Medical journals further discourage openness by refusing to publish research that has already been presented to the public. Medical journals further discourage openness by refusing to publish research that has already been presented to the public. Although the advantages and disadvantages of such a policy can be debated, it has had a strong negative effect on the access that reporters have to working scientists. Although the advantages and disadvantages of such a policy can be debated, it has had a strong negative effect on the access that reporters have to working scientists. Researchers who are aware of the policy regularly refuse to discuss their findings with the press; journalists who have heard of a certain study then find themselves unable to interview its authors. Researchers who are aware of the policy regularly refuse to discuss their findings with the press; journalists who have heard of a certain study then find themselves unable to interview its authors.

Is the public partially to blame? Some suggest that the difficulty lies with the audience: Some suggest that the difficulty lies with the audience: –People must be more attentive and more skeptical when they interpret news about health; –Again, part of the problem is the lack of education in statistics from grammar school on up.  Arguably, understanding statistics is much more important for good citizenship than knowing algebra. How can we understand this process?

Why are risks minimized? Don’t know risks Don’t know risks Poor technology assessment Poor technology assessment Role of industry Role of industry The medical community doesn’t get it; The medical community doesn’t get it; Marketing and media hype often triumph over scientific evidence Marketing and media hype often triumph over scientific evidence

Examples of poor medicine –Pts given expensive anti HTN pills that they can’t afford over cheaper pills that are more effective; –Given surgical implants when a similar operation without implants works better; –Doctors order diagnostic tests (PSA or mammo in older women) that are useless or even dangerous; –Far too little technology assessment or research that compares a new treatment with the standard treatment.  NICE (National Institute of Clinical Excellence) in UK evaluates drugs and devices and makes recommendations about their use.

Odyssey Remember the Sirens – Remember the Sirens – –called out seductive messages to passing sailors –sailors turned their ships toward the Sirens –would inevitably become ship wrecked Similar seductive calls regularly go out to patients and doctors. We are pulled to the seductive calls of new technology without recognizing the risks. Similar seductive calls regularly go out to patients and doctors. We are pulled to the seductive calls of new technology without recognizing the risks.

Safe Passage In order to pass the Sirens, Odysseus, had his crew put wax in their ears and they bound him to the mast so he wouldn’t be swayed by the call of Sirens. In order to pass the Sirens, Odysseus, had his crew put wax in their ears and they bound him to the mast so he wouldn’t be swayed by the call of Sirens.

Do we need to invest in ear wax? Or do we need some rope to Or do we need some rope to attach to the mast?

Examples of new tools.. Internet offers new possibilities Internet offers new possibilities

Tools to help patients better understand the health care system and risk

Recommendations Researchers who present papers at meetings or publish them in journals should be available to the press to clarify and explain their findings. Researchers who present papers at meetings or publish them in journals should be available to the press to clarify and explain their findings. Journalists should “triangulate” by seeking out critics and commentators on the research. Journalists should “triangulate” by seeking out critics and commentators on the research. Journals should make efforts to interest the press equally in negative and positive studies. Journals should make efforts to interest the press equally in negative and positive studies. To increase reporters' access to critical sources, medical journals could release the names of peer reviewers who are willing to speak with them. To increase reporters' access to critical sources, medical journals could release the names of peer reviewers who are willing to speak with them.

More rec’s When the press is invited to meetings at which peer- reviewed abstracts are presented, sponsoring organizations could also provide reviewers' names (if reviewers agree to this practice). Alternatively, journals could provide the names of experts who have published widely in the relevant field. When the press is invited to meetings at which peer- reviewed abstracts are presented, sponsoring organizations could also provide reviewers' names (if reviewers agree to this practice). Alternatively, journals could provide the names of experts who have published widely in the relevant field. The medical community could do even more to promote disclosure of conflicts of interest. They should also be prepared to place sanctions on those who mislead or fail to disclosure conflicts. For example, more journals could require authors to reveal conflicts of interest and refuse to publish those fail to disclosure or are dishonest. The medical community could do even more to promote disclosure of conflicts of interest. They should also be prepared to place sanctions on those who mislead or fail to disclosure conflicts. For example, more journals could require authors to reveal conflicts of interest and refuse to publish those fail to disclosure or are dishonest. Scientists should check all institutional press releases for accuracy and clarity. Scientists should check all institutional press releases for accuracy and clarity.

More rec’s Medical journals and sponsors of medical meetings should provide access to experts who can assist journalists to place new information in the proper context. Persons ideally suited to this task are those who have peer reviewed a given article or abstract before its publication or presentation. Medical journals and sponsors of medical meetings should provide access to experts who can assist journalists to place new information in the proper context. Persons ideally suited to this task are those who have peer reviewed a given article or abstract before its publication or presentation. When financial interest or research sponsorship raises a potential conflict of interest, journalists should be told of the conflict by scientists, journal staff, or members of professional organizations. When financial interest or research sponsorship raises a potential conflict of interest, journalists should be told of the conflict by scientists, journal staff, or members of professional organizations. The purposes served by the embargo system of medical journals should be evaluated by the journals and members of the press. The purposes served by the embargo system of medical journals should be evaluated by the journals and members of the press.

More rec’s Concerns that research data will be misinterpreted by the media are best addressed by providing members of the media with easily understood explanations; withholding the information may promote even greater misunderstanding. I don’t think intentional withholding is very prevalent. Is it? Concerns that research data will be misinterpreted by the media are best addressed by providing members of the media with easily understood explanations; withholding the information may promote even greater misunderstanding. I don’t think intentional withholding is very prevalent. Is it? Those who understand the complexities of newsworthy issues in medicine and public health should work with the media proactively to prevent distortions and to make news coverage more comprehensive. Those who understand the complexities of newsworthy issues in medicine and public health should work with the media proactively to prevent distortions and to make news coverage more comprehensive. The academic medical community should act to protect its members from intimidation by industry. These actions may include alerting members of the media to the intimidation of scientists. The academic medical community should act to protect its members from intimidation by industry. These actions may include alerting members of the media to the intimidation of scientists. Medical journals should revise their policies so that scientists who explain a study to reporters do not necessarily jeopardize their chances of publishing their work. Medical journals should revise their policies so that scientists who explain a study to reporters do not necessarily jeopardize their chances of publishing their work.