Addressing the Ethical Morass at the Intersection of Media, Medicine and Public Health

Gary SchwitzerPublisher

16th Annual Mates David and Hinna Stahl Memorial Lecture in BioethicsRobert Wood Johnson Medical School, UMDNJ

1974: I wanted to do sports

1984: an epiphany

AIDS

Artificial Heart

Alzheimer’s

“The limits of what doctors can do to human beings in the name of science are a matter for public decision and public accountability.”

- George Annas, NYT op-ed, 2001

April 1984 news conference at which HHS secretary Margaret Heckler named American Robert Gallo as discoverer of the AIDS virus with no mention of the work of Frenchman Luc Montagnier (who was awarded 2008 Nobel Prize for discovery of HIV). Worse, she announced that a

vaccine would be ready within two years.

Jay Winsten in Health Affairs:“Alzheimer’s disease became a hot story in the fall of 1984. Five weeks before the presidential election, HHS Secretary Heckler announced five new federal grants creating centers for research on the disease. The NY Times carried page-one stories on new developments in Alzheimer’s research.”

It was in this climate that researchers published the results of a feasibility study of a potential therapy in the journal Neurosurgery. • 4 patients• Relied on patients’ families’ subjective assessment of

improvement.• The authors wrote that “results must be interpreted

cautiously” but that “We have had repeated reports of decreased confusion, increased initiative and improvement in activities of daily living.”

December 3, 1984

• The medical center held a news conference at which a patient was made available. ABC, CBS, CNN, NBC, PBS and newspapers and magazines across the country covered it.

• Print headlines: – Alzheimer’s Treatment Found Successful– Scientists Find First Breakthrough Against Alzheimer’s– Researchers Believe Treatment for Alzheimer’s Disease is Near– Researchers describe possible Alzheimer’s cure

30 years later

April 1, 2013

Critic Seth Mnookin:“The result of this succession of grandiose promises is similar to that of the boy who cried wolf: Eventually, it becomes hard to take even realistic claims seriously. …the real problem with Time’s headline, which is not that it’s wrong…is that in the context of a fatal disease with excruciatingly painful treatment options, it’s simply cruel.”

And within the pages of that TIME cover story are 9 mentions of MD Anderson Cancer Center, including mention of their “Moon Shots” program to cure cancer… and this full-page ad insert.

Paul Raeburn of the Knight Science Journalism Tracker points out that this violates The American Society of Magazine Editors guidelines that state:

“Editors and publishers should avoid positioning advertisements near editorial pages that discuss or show the same or similar products sold by the advertiser (a rule of thumb used by many magazines is, the reader must turn the page at least twice between related ad and edit).”

TIME Warner owns CNN

7 months earlier, CNN had a “breaking news exclusive” on the MD Anderson Moon Shots program

What CNN didn’t report…

• Resignations, questions about conflicts of interest and fraud probes of the program in question.

• Not likely to be the kinds of angles and issues one pursues when there are “exclusive” reporting arrangements between a news organization and a medical center.

Gupta attempted to defend the live coverage. “We didn’t know what they were going to say,” he explained. “They didn’t tell us. We didn’t know whether they were going to have any proof. We didn’t think they were.”

Yet they chose to carry it live.

Unverifiable claims were broadcast to a worldwide audience, leaving viewers to figure out whether the claim had any meaning or not.

Gupta also defended five interviews CNN had aired with two leaders of Raelian group, in one of which Connie Chung addressed one of the leaders as “Your Holiness.”

Holy sh-- !!!

Alzheimer’s today?

NBC: “For the first time ever an experimental drug is showing great promise of slowing the progression of Alzheimer’s disease.”

First time ever?

In 5-minute web search, we found 6 different approaches reported to slow the progression of Alzheimer’s disease in just the past 4 years:

July 17, 2012: New Alzheimer’s Drug Slowing Progression of the Disease (CBS)March 8, 2012: Alzheimer’s treatment in late stages of disease does slow progression (The Independent)October 20, 2011: Antiviral Drugs May Slow Alzheimer’s Progression (Science Daily)May 11, 2009: Can New Drug Slow Progress of Alzheimer’s? (ThirdAge.com)August 3, 2008: Drugs May Slow Progress Of Alzheimer’s (NPR on two drugs)

Lots of excitement – not much evidence - about expensive new technologies

Every day for 7 years3,500 media messages reviewed

We review stories that include claims about…

• Medical treatments• Tests• Products• Procedures

Our criteria: Does the story explain…

• What’s the total cost?• How often do benefits occur?• How often do harms occur?• How strong is the evidence?• Is the condition exaggerated?• Is this really a new approach?• Is it available?• Are there alternative choices?• Who’s promoting this?• Do they have a financial conflict of interest?

After 1,900 stories over 7 years

60-70% of stories fail to:

✔ Discuss costs

✔Quantify potential benefits

✔ Quantify potential harms

✔ Evaluate the quality of the evidence

News stories often paint a kid-in-candy-store picture

of U.S. health care

TerrificRisk-freeWithout a price tag

Drowning from a firehose of infoxication

Common flaws: too much stenography – not independent vetting of studies in journals

Glorifying big names/big journals - Publication in a medical journal does not guarantee the findings are true (or even important).

Not ready for prime time – journals meant for conversation among scientists

Never intended to be sources of daily news. So if you’re going to use them that way, you simply must be aware of the landscape:

• retractions, research fraud, fabrication, falsification of data

• unpublished data (BMJ special edition on “the extent, causes and consequences of unpublished evidence”)

• ghostwriting of journal articles (The Public Library of Science hosts a “Ghostwriting Collection” on its website.)

Failure to evaluate inherently weak science

Idolatry of the surrogate – Not understanding or simply not reporting that surrogate outcomes (like tumor shrinkage) may not translate into clinically meaningful outcomes (longer life).

Reckless extrapolation - Predicting what may happen in humans – and soon - based on very preliminary animal / lab science.

Lack of awareness of conflicts of interest & other ethical issues

Going soft on business stories or on local stories

Common flaws

Exaggerate or emphasize benefits

Ignoreor

Minimize Potential Harms

“Most troublesome trend” award

THE WINNER IS:

SCREENING TESTS(often involving this gland)

Award for best supporting roles:• Breasts• Lungs• Arteries

“All screening programmes do harm; some do good as well.”

- Dr. Muir Gray

False positives suggest a problem that’s really not there. Requires more testing, some of it more invasive carrying its own harms (biopsies)

Incidentalomas – finding things you didn’t need to/want to find Emory radiologist after his virtual colonoscopy found suspicious spots:

“I awoke in the recovery room after 5 hours, with chest tube, Foley catheter, subclavian central venous catheter, nasal oxygen catheter, epidural catheter, arterial catheter, subcutaneously administered heparin, constant infusion of prophylactic antibiotics, and patient-controlled analgesia with intravenously administered narcotics. Excruciating pain.” Cost: > $50,000. All incidentalomas.

Anxiety. Labeling. You are now “a patient.” You “have something.”

Cost

Prizes for Prostates

I am not anti-screening

• I do oppose imbalanced, incomplete messages on screening tests

• I do oppose messages that emphasize benefits and minimize or ignore harms

• I do oppose messages that only tell anecdotes of those who claim their life was saved by screening – something that can never be proven.

Crossing line from journalism to advocacy

A physician wrote to me after seeing this:

"Could a political reporter say 'Vote for Obama?'!"

“The 5-year survival rates for breast cancer diagnosed early is 98 percent…and this is largely due to screening and early diagnosis.”

Crusading advocacy on CBS News

Left CBS, left “journalism,” recently joined ABC

Can you imagine a TV political reporter wearing a button saying, “Vote for Romney” ?

JOSH BILLINGS (PEN NAME OF HUMORIST HENRY WHEELER SHAW, 1818 – 1885)

“I honestly believe it is better to know nothing than to know what ain’t so.”

Cheerleading

“The press, on its own, if it chooses, can make the transition from cheerleaders of science to independent observers. The journalistic trumpeting of medical cures, even though accompanied by sober cautions against optimism, deserves to be severely throttled back in recognition of an unfortunate reality: though news is sold around the clock, major advances in medicine come along infrequently.”

-- Daniel Greenberg: Science, Money, and Politics, 2001

We should strive to be independent from the agendas and timetables of journals, advocates, industry and government agencies. We should nourish and encourage original and analytical reporting that provides audiences/readers with context. Given that thousands of journal articles and conference presentations appear each year, and that relatively few are immediately relevant to our audiences/readers, health journalists have a responsibility to be selective so that significant news is not overwhelmed by a blizzard of trivial reports. We are the eyes and ears of our audiences/readers; we must not be mere mouthpieces for industry, government agencies, researchers or health care providers.

- Am J Bioeth, 2004 Fall;4(4):W9-13.A statement of principles for health care journalists

- Website of Assoc. of Health Care Journalists

Every second spent reporting on “new stuff” in health care is a second not spent on helping people understand:

• The social determinants of health• Affordable Care Organizations• Medical homes• Concepts they need to navigate

the health care system of this era.

Health journalism ethics issues

• National Press Fdn. offers Pfizer-pfunded all expense paid trips to workshops on issues affecting Pfizer’s product line.

• Retired S. Carolina newspaper columnist got his column back, now sponsored by his new employer, local medical center.

• Many local TV stations air gee-whiz medical news that is actually produced and written by the very hospital being touted.

• TV MD-“journalists” who report on themselves delivering care. • Many radio news anchors solicit advertising and then read ads for

health care advertisers they solicited. • Many magazine writers have told me they are ordered to avoid

certain topics or go soft on others so as not to offend advertisers. Often in women’s magazines.

Read John Ioannidis to learn pitfalls of a steady diet of journal stories

PLoS Med 2005; 2(8): e124

Journals complicit in miscommunication

• Editors of the HEART Group journals recently stated that “inappropriate word choice to describe results can lead to scientific inaccuracy.”

– J AM COLL CARDIOL, Vol. 60, No. 23, 2012

• “Are we making a mountain out of a mole hill? A call to appropriate interpretation of clinical trials and population-based studies”

– Am J Obstet Gynecol, published online 11/29/12

• “Spin and Boasting in Research Articles.”- Commentary in Arch Pediatr Adolesc Med:

[published online October 2012]

Annals of Oncology: “Bias in reporting of end points of efficacy and toxicity in randomized, clinical trials for women with breast cancer”

(published online January 9, 2013)

Reuters: “Doctors relying on studies published in top journals for guidance about how to treat women with breast cancer may not be getting the most accurate information.”

What the authors point out:

• “Investigators go overboard to make their studies look positive.”

• In 2/3 of studies, that meant not listing serious side effects in the abstract – which is all many may read

• In 1/3 of studies, if the treatment didn’t work as hoped, researchers reported results the study was not designed to test – “secondary endpoints”

September 2012

Positive “spin” was identified in about half of press releases and news stories. The main factor associated with “spin” in press releases was the presence of “spin” in the journal article abstract conclusion.

In other words, a direct link from published study news release news story

Readers/consumers/patients left behind in this food chain

Public Misunderstanding of Cancer Risk

• Studies have consistently shown people overestimate their own risk of cancer

• Other studies show people overestimate risk factors that have not been proven and underestimate risk factors that are well-established

“Unrealistic Optimism in Early-Phase Oncology Trials”

People tended to overestimate the benefits of the trial they were enrolled in and underestimate its risks.

-- IRB: Ethics & Human Research 2011

Many cooks in this stew…

Editors wrote:

“Schwitzer's alarming report card of the trouble with medical news stories is thus a wake-up call for all of us involved in disseminating health research—researchers, academic institutions, journal editors, reporters, and media organizations—to work collaboratively to improve the standards of health reporting.”

We hold up a mirror to all who communicate about health care

• Are you guilty of infoxication?• Are you helping people

navigate this confusing system?

• Are you fostering an environment of shared decision-making between patients and doctors?

• What kind of grades would you get on our 10 criteria?

• If you don’t accept or agree with our 10 criteria, what criteria do you use?

First, do no harmIncluding in the messages we convey

We must help people understand and deal with the clash between:

• Science• Evidence• Data• Recommendations for

entire population• What we can prove• Grasping uncertainty and

helping people apply critical thinking to decision-making issues

Intuition Emotion Anecdote Decision-making by an

individual What we believe, wish, or

hope Promoting false certainty

where it does not exist

Will this be our legacy as well?

Gary@HealthNewsReview.org

Thank you