Communicating the Harms and Communicating the Harms and Benefits of Medical Benefits of Medical

Treatments: a look from both Treatments: a look from both sides of the aisle… sides of the aisle…

Prepared by michael wilkes and richard kravitzPrepared by michael wilkes and richard kravitz

We learn about medicine We learn about medicine through the mediathrough the media

Press coverage is too often inaccurate, Press coverage is too often inaccurate, superficial, or sensationalized.superficial, or sensationalized.

Some of the most important medical issues are Some of the most important medical issues are not covered not covered

Inaccurate reporting can generate false hopes Inaccurate reporting can generate false hopes and unwarranted fears. and unwarranted fears.

Need to recognize the limitations of languageNeed to recognize the limitations of language Human beings are not good at statistical Human beings are not good at statistical

reasoning reasoning – Very difficult to communicate about very low risks, small Very difficult to communicate about very low risks, small

differences between risks, and uncertainty around risksdifferences between risks, and uncertainty around risks

Public ExpectationsPublic Expectations

Public believes that “newer is better” Public believes that “newer is better” and “more is better”and “more is better”

Public wants to believe the hype they Public wants to believe the hype they hear from manufacturers, doctors, hear from manufacturers, doctors, hospitals and journals;hospitals and journals;

Public believes promotions about Public believes promotions about health and believes it is held to a health and believes it is held to a higher standard than say Volvo ads or higher standard than say Volvo ads or coke adscoke ads

Deyo’s common myths about Deyo’s common myths about the media’s coverage of the media’s coverage of

health:health: Standard care is well defined Standard care is well defined Newer is always betterNewer is always better Doctors adopt medical advances only Doctors adopt medical advances only

on the basis of good scienceon the basis of good science Medical test are always good – how Medical test are always good – how

can information be bad? can information be bad? Getting tested to detect cancer early Getting tested to detect cancer early

is one of the best ways to stay is one of the best ways to stay healthy--or is it? healthy--or is it?

Conceptual framework and Conceptual framework and flow of media informationflow of media information

Communication is the process by Communication is the process by which information is transferred which information is transferred from a source to a receiver. from a source to a receiver.

SMCR model which involves a SMCR model which involves a ssource ource sending a sending a mmessage via different essage via different cchannels to the hannels to the receiversreceivers). ).

Source message channels receiver Source message channels receiver

Chain of medical Chain of medical informationinformation

Starts with a source (scientist)Starts with a source (scientist) Norms usually dictate that "peers" are the first to Norms usually dictate that "peers" are the first to

receive new informationreceive new information Professional organizations are the next in the chainProfessional organizations are the next in the chain

– usually disseminated via medical journals, meetings or usually disseminated via medical journals, meetings or society news letters, government reports, detail people society news letters, government reports, detail people and word of mouth. and word of mouth.

The news media then receives the information The news media then receives the information (through the above sources or through press (through the above sources or through press releases)releases)

At the media source an editorial decision is made At the media source an editorial decision is made about the appropriateness of the material for the about the appropriateness of the material for the public.public.

In the news room…In the news room…

If selected, the material is assigned If selected, the material is assigned to a journalist who translates and to a journalist who translates and explains it to the public.explains it to the public.

The final step is the reader who The final step is the reader who selectively chooses what to engage selectively chooses what to engage withwith

Smooth CommunicationSmooth Communication In order for the communication chain to In order for the communication chain to

function with any degree of sophistication function with any degree of sophistication each link must be compatible with each link must be compatible with adjacent links. adjacent links.

In medicine, the problems involve two In medicine, the problems involve two primary forces – primary forces –

– the medical research community the medical research community (researchers, institutions, clinicians)(researchers, institutions, clinicians)

and and – the journalism community (journalists, the journalism community (journalists,

editors, and publishers). editors, and publishers).

Problems with Problems with communicationcommunication

The interaction of these two groups has The interaction of these two groups has effected the timely and accurate effected the timely and accurate dissemination of medical research to dissemination of medical research to the general public. the general public.

There are three controversial barriers There are three controversial barriers to the dissemination of medical to the dissemination of medical information information – peer review, peer review, – journal editorial policy (the Ingelfinger journal editorial policy (the Ingelfinger

Rule), Rule), – and the news embargo. and the news embargo.

Examples of getting it Examples of getting it wrong….wrong….

The public is poorly served by the coverage The public is poorly served by the coverage of medical science in the general press:of medical science in the general press:– Hospitals promoted knee arthroscopy centers to Hospitals promoted knee arthroscopy centers to

patients with arthritis. Only to find that a clever patients with arthritis. Only to find that a clever RCT showed the procedure to be no better than RCT showed the procedure to be no better than a sham operation a sham operation

– HealthNet gets sued, and loses, for not providing HealthNet gets sued, and loses, for not providing BMT coverage to women with late stage breast BMT coverage to women with late stage breast cancer. They argue that the treatment was cancer. They argue that the treatment was never proven effective. The press coverage of never proven effective. The press coverage of the trial paints HealthNet as a big boogieman the trial paints HealthNet as a big boogieman that is careless and cheap with regard to women that is careless and cheap with regard to women dying of breast cancer.dying of breast cancer.

More examples…More examples… In Aug (2006) Cathy DeAngelis wrote an In Aug (2006) Cathy DeAngelis wrote an

editorial, “The influence of money on editorial, “The influence of money on medical science” medical science” – In it she admitted to several failures by authors In it she admitted to several failures by authors

to disclose conflicts of interest. to disclose conflicts of interest. – She also announced that industry funded studies She also announced that industry funded studies

would need to hire independent outside data would need to hire independent outside data analysts to give an added layer to peer review. analysts to give an added layer to peer review.

– There were also claims that in response, industry There were also claims that in response, industry pushed their funded researchers boycott JAMA.pushed their funded researchers boycott JAMA.

More examples…More examples…

The government has no central data The government has no central data base of IRBs, despite a proposed rule base of IRBs, despite a proposed rule requiring registration in 2004. requiring registration in 2004. – The field is ripe with for-profit IRBs that The field is ripe with for-profit IRBs that

are affiliated with for profit contract are affiliated with for profit contract research institutions;research institutions;

More examples….More examples…. In 1998 researchers thought they hit the mother-In 1998 researchers thought they hit the mother-

load with data suggesting that tamoxifen, used to load with data suggesting that tamoxifen, used to treat breast cancer, could actually prevent it in 50% treat breast cancer, could actually prevent it in 50% of women. of women. – despite being widely covered by the press, the promise despite being widely covered by the press, the promise

never panned out. The side effects – hot flashes and other never panned out. The side effects – hot flashes and other menopause-like symptoms, increased rates of uterine menopause-like symptoms, increased rates of uterine cancer and blood clots – outweighed the slight benefits;cancer and blood clots – outweighed the slight benefits;

– In April 2006 the NCI again promised a new drug to prevent In April 2006 the NCI again promised a new drug to prevent breast cancer – raloxifene –breast cancer – raloxifene – claimed it had fewer side effects claimed it had fewer side effects claimed it could prevent 2 million cases of breast cancer.claimed it could prevent 2 million cases of breast cancer. raloxifene is already used to prevent bone loss after menopauseraloxifene is already used to prevent bone loss after menopause NCI used relative risk reductions in their promotion rather than NCI used relative risk reductions in their promotion rather than

absolute risk reductionsabsolute risk reductions At the press release and conference call no data was given to At the press release and conference call no data was given to

scientists or reporters and it had not been published in a scientists or reporters and it had not been published in a journal. journal.

Blaming the press…Blaming the press…

Scientists and physicians blame the Scientists and physicians blame the presspress

Claim reporters are careless about Claim reporters are careless about how they present medical research. how they present medical research.

Claim ignorant of the scientific Claim ignorant of the scientific processprocess

Claim competition between Claim competition between journalists limits accuracy and depth journalists limits accuracy and depth

Blaming the scientistsBlaming the scientists Journalists accuse the medical community Journalists accuse the medical community

of:of: Obstructing, misguiding, or failing to alert Obstructing, misguiding, or failing to alert

the press to important details;the press to important details; Being competitive about media coverageBeing competitive about media coverage Failing to disclose conflictsFailing to disclose conflicts Protecting those who do not work to Protecting those who do not work to

promote accurate reportingpromote accurate reporting Not being able or willing to speak in plain Not being able or willing to speak in plain

EnglishEnglish

Both parties share the Both parties share the responsibility for accurate responsibility for accurate

communication to the public. communication to the public.

SensationalismSensationalism

Too often, journalists pursue medical Too often, journalists pursue medical news as if they are reporting on a news as if they are reporting on a hostage crisis. hostage crisis.

Information is delivered rapidly, but Information is delivered rapidly, but little time is taken to provide a little time is taken to provide a context for the story.context for the story.

Instead, the reporting is Instead, the reporting is sensationalized: sensationalized:

Sensationalism continued…Sensationalism continued…– The journalist overstates a scientific findingThe journalist overstates a scientific finding– scientists and scientific institutions contribute to scientists and scientific institutions contribute to

sensationalism. sensationalism. Scientists have understandable desires for publicity: Scientists have understandable desires for publicity:

– Helps them get fundingHelps them get funding– is valued by institutionsis valued by institutions– efforts of scientists to attract media attention, however, can efforts of scientists to attract media attention, however, can

result in flawed coverage.result in flawed coverage. press releases are issued that are inaccurate or press releases are issued that are inaccurate or

incomplete incomplete press conferences are held even though the data being press conferences are held even though the data being

discussed are preliminary.discussed are preliminary. Scientific organizations invite the media to their Scientific organizations invite the media to their

presentations without providing explanations of presentations without providing explanations of epidemiologic and statistical concepts or access to epidemiologic and statistical concepts or access to scientistsscientists

Bayesian ReportingBayesian Reporting

We’d all be better off if the media We’d all be better off if the media took the same approach to new took the same approach to new research as the wise clinician -- in a research as the wise clinician -- in a Bayesian framework. Bayesian framework. – Examine what was known before, Examine what was known before,

evaluate the strength of the new evaluate the strength of the new information, form tentative conclusions, information, form tentative conclusions, make an informed decision pending make an informed decision pending better (more definitive information)better (more definitive information)

Negative Studies (-)Negative Studies (-)

– Media and the medical community Media and the medical community against negative studies;against negative studies; The media do not mention negative studies, The media do not mention negative studies,

perhaps because they seem to be perhaps because they seem to be inconsequential;inconsequential;

This omission is then compounded because This omission is then compounded because medical journals, who place an extremely medical journals, who place an extremely high value on media coverage, are less likely high value on media coverage, are less likely to publish studies that have negative results;to publish studies that have negative results;

scientists are less likely to submit them for scientists are less likely to submit them for publication.publication.

Biases and Conflicts of Biases and Conflicts of interestinterest

reporters need to examine the credibility and reporters need to examine the credibility and biases of scientific sources. biases of scientific sources. – Reporters are misled when the public relations efforts of Reporters are misled when the public relations efforts of

scientists, institutions, or the pharmaceutical industry scientists, institutions, or the pharmaceutical industry turn into blatant boosterism.turn into blatant boosterism.

– The Press Release The Press Release – MMedical news reporters being barraged by press kits and edical news reporters being barraged by press kits and

other materials from corporate sources, academic other materials from corporate sources, academic institutions, medical journals, and professional institutions, medical journals, and professional organizationsorganizations

– These materials can be misleading and even deceptive, These materials can be misleading and even deceptive, sometimes amounting to nothing more than sometimes amounting to nothing more than sensationalism.sensationalism.

Access to ScientistsAccess to Scientists

The major sources for a reporter's The major sources for a reporter's story on a research article or story on a research article or presentation are generally the presentation are generally the authors or presenters themselves.authors or presenters themselves.– Reporters who wish to verify such Reporters who wish to verify such

stories, however, should also speak to stories, however, should also speak to persons who can criticize the work.persons who can criticize the work.

Disclosing Conflicts of Disclosing Conflicts of InterestInterest

A journalist's audience should be told A journalist's audience should be told explicitly whether the journalist's source of explicitly whether the journalist's source of information could benefit financially from information could benefit financially from the media attention or whether the source the media attention or whether the source is funded or employed by an institution that is funded or employed by an institution that will benefit.will benefit.– such conflicts of interest are often not apparent such conflicts of interest are often not apparent

to reporters or their audiences;to reporters or their audiences;– Reporters have become more aware of conflicts Reporters have become more aware of conflicts

of interest because of policies of medical of interest because of policies of medical journals that require conflicts to be revealed. journals that require conflicts to be revealed.

Public Relations DisguisesPublic Relations Disguises

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

Lack of Follow-upLack of Follow-up

The public is generally unaware of the The public is generally unaware of the scientific processscientific process

Journalist have a responsibility to help Journalist have a responsibility to help explain the scientific process. explain the scientific process.

Journalists should spend more time Journalists should spend more time following ongoing stories and following ongoing stories and returning to subjects that were first returning to subjects that were first covered when only preliminary covered when only preliminary findings were available. findings were available.

Complex terminologyComplex terminology

E.g.,meta-analysis, E.g.,meta-analysis, writing is poorwriting is poor the scientific meaning of certain the scientific meaning of certain

words is different than their common words is different than their common usage (negative study);usage (negative study);

Stories That Are Not Stories That Are Not CoveredCovered

Narrow Focus on a few journalsNarrow Focus on a few journals Journalists have been criticized for having a Journalists have been criticized for having a

limited focus;limited focus; Each week, medical reporters feel obliged to Each week, medical reporters feel obliged to

glance at the lead articles or press releases from glance at the lead articles or press releases from only three or four peer-reviewed journals;only three or four peer-reviewed journals;

This sense of obligation to cover particular This sense of obligation to cover particular articles can discourage reporters from following articles can discourage reporters from following an area of research, a process that might involve an area of research, a process that might involve contacting scientists, scanning specialty journals, contacting scientists, scanning specialty journals, or reading papers other than lead articles. or reading papers other than lead articles.

Information That Is Information That Is Withheld or Not ExplainedWithheld or Not Explained

Issues sometimes go unreported in Issues sometimes go unreported in the media because the medical the media because the medical community does not want to discuss community does not want to discuss problems publicly or fears that problems publicly or fears that journalists will not understand the journalists will not understand the issues;issues;

Corporate Pressures To Remain Corporate Pressures To Remain QuietQuiet

Journal Pressures Control Journal Pressures Control DisseminationDissemination

Medical journals further discourage openness Medical journals further discourage openness by refusing to publish research that has by refusing to publish research that has already been presented to the public. already been presented to the public.

Although the advantages and disadvantages Although the advantages and disadvantages of such a policy can be debated, it has had a of such a policy can be debated, it has had a strong negative effect on the access that strong negative effect on the access that reporters have to working scientists.reporters have to working scientists.

Researchers who are aware of the policy Researchers who are aware of the policy regularly refuse to discuss their findings with regularly refuse to discuss their findings with the press; journalists who have heard of a the press; journalists who have heard of a certain study then find themselves unable to certain study then find themselves unable to interview its authors. interview its authors.

Is the public partially to Is the public partially to blame?blame?

Some suggest that the difficulty lies with Some suggest that the difficulty lies with the audience: the audience: – People must be more attentive and more People must be more attentive and more

skeptical when they interpret news about skeptical when they interpret news about health;health;

– Again, part of the problem is the lack of Again, part of the problem is the lack of education in statistics from grammar school on education in statistics from grammar school on up. up. Arguably, understanding statistics is much more Arguably, understanding statistics is much more

important for good citizenship than knowing algebra.important for good citizenship than knowing algebra.How can we understand this process?How can we understand this process?

Why are risks minimized?Why are risks minimized?

Don’t know risksDon’t know risks Poor technology assessmentPoor technology assessment Role of industryRole of industry The medical community doesn’t The medical community doesn’t

get it;get it; Marketing and media hype often Marketing and media hype often

triumph over scientific evidencetriumph over scientific evidence

Examples of poor medicineExamples of poor medicine

– Pts given expensive anti HTN pills that they can’t Pts given expensive anti HTN pills that they can’t afford over cheaper pills that are more effective;afford over cheaper pills that are more effective;

– Given surgical implants when a similar operation Given surgical implants when a similar operation without implants works better;without implants works better;

– Doctors order diagnostic tests (PSA or mammo in Doctors order diagnostic tests (PSA or mammo in older women) that are useless or even older women) that are useless or even dangerous;dangerous;

– Far too little technology assessment or research Far too little technology assessment or research that compares a new treatment with the that compares a new treatment with the standard treatment. standard treatment. NICE (National Institute of Clinical Excellence) in UK NICE (National Institute of Clinical Excellence) in UK

evaluates drugs and devices and makes evaluates drugs and devices and makes recommendations about their use.recommendations about their use.

OdysseyOdyssey

Remember the Sirens – Remember the Sirens – – called out seductive messages to passing called out seductive messages to passing

sailorssailors– sailors turned their ships toward the Sirenssailors turned their ships toward the Sirens– would inevitably become ship wreckedwould inevitably become ship wrecked

Similar seductive calls regularly go out Similar seductive calls regularly go out to patients and doctors. We are pulled to patients and doctors. We are pulled to the seductive calls of new to the seductive calls of new technology without recognizing the technology without recognizing the risks. risks.

Safe PassageSafe Passage

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

Do we need to invest in ear Do we need to invest in ear wax?wax?

Or do we need some rope toOr do we need some rope to

attach to the mast?attach to the mast?

Examples of new tools..Examples of new tools..

Internet offers new possibilitiesInternet offers new possibilities

Tools to help patients Tools to help patients better understand the better understand the

health care system and riskhealth care system and risk

RecommendationsRecommendations Researchers who present papers at meetings Researchers who present papers at meetings

or publish them in journals should be or publish them in journals should be available to the press to clarify and explain available to the press to clarify and explain their findings.their findings.

Journalists should “triangulate” by seeking Journalists should “triangulate” by seeking out critics and commentators on the out critics and commentators on the research.research.

Journals should make efforts to interest the Journals should make efforts to interest the press equally in negative and positive studies. press equally in negative and positive studies.

To increase reporters' access to critical To increase reporters' access to critical sources, medical journals could release the sources, medical journals could release the names of peer reviewers who are willing to names of peer reviewers who are willing to speak with them. speak with them.

More rec’sMore rec’s When the press is invited to meetings at which When the press is invited to meetings at which

peer-reviewed abstracts are presented, sponsoring peer-reviewed abstracts are presented, sponsoring organizations could also provide reviewers' names organizations could also provide reviewers' names (if reviewers agree to this practice). Alternatively, (if reviewers agree to this practice). Alternatively, journals could provide the names of experts who journals could provide the names of experts who have published widely in the relevant field. have published widely in the relevant field.

The medical community could do even more to The medical community could do even more to promote disclosure of conflicts of interest. They promote disclosure of conflicts of interest. They should also be prepared to place sanctions on should also be prepared to place sanctions on those who mislead or fail to disclosure conflicts. those who mislead or fail to disclosure conflicts. For example, more journals could require authors For example, more journals could require authors to reveal conflicts of interest and refuse to publish to reveal conflicts of interest and refuse to publish those fail to disclosure or are dishonest. those fail to disclosure or are dishonest.

Scientists should check all institutional press Scientists should check all institutional press releases for accuracy and clarity. releases for accuracy and clarity.

More rec’sMore rec’s Medical journals and sponsors of medical Medical journals and sponsors of medical

meetings should provide access to experts who meetings should provide access to experts who can assist journalists to place new information in can assist journalists to place new information in the proper context. Persons ideally suited to this the proper context. Persons ideally suited to this task are those who have peer reviewed a given task are those who have peer reviewed a given article or abstract before its publication or article or abstract before its publication or presentation. presentation.

When financial interest or research sponsorship When financial interest or research sponsorship raises a potential conflict of interest, journalists raises a potential conflict of interest, journalists should be told of the conflict by scientists, journal should be told of the conflict by scientists, journal staff, or members of professional organizations. staff, or members of professional organizations.

The purposes served by the embargo system of The purposes served by the embargo system of medical journals should be evaluated by the medical journals should be evaluated by the journals and members of the press. journals and members of the press.

More rec’sMore rec’s Concerns that research data will be misinterpreted by the Concerns that research data will be misinterpreted by the

media are best addressed by providing members of the media are best addressed by providing members of the media with easily understood explanations; withholding the media with easily understood explanations; withholding the information may promote even greater misunderstanding. I information may promote even greater misunderstanding. I don’t think intentional withholding is very prevalent. Is it? don’t think intentional withholding is very prevalent. Is it?

Those who understand the complexities of newsworthy Those who understand the complexities of newsworthy issues in medicine and public health should work with the issues in medicine and public health should work with the media proactively to prevent distortions and to make news media proactively to prevent distortions and to make news coverage more comprehensive. coverage more comprehensive.

The academic medical community should act to protect its The academic medical community should act to protect its members from intimidation by industry. These actions may members from intimidation by industry. These actions may include alerting members of the media to the intimidation include alerting members of the media to the intimidation of scientists. of scientists.

Medical journals should revise their policies so that Medical journals should revise their policies so that scientists who explain a study to reporters do not scientists who explain a study to reporters do not necessarily jeopardize their chances of publishing their necessarily jeopardize their chances of publishing their work. work.

The End