Schwitzer keynote to ISDM 2013 Lima, Peru


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International Shared Decision Making Conference
Lima, Peru
June, 2013

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  • We’ve been talking about this for a long time. Gordon Guyatt, another of our conference keynote speakers, along with Andy Oxman and others, wrote 20 years ago
  • Fast forward to today and the internet and social media present new challenges. This David Henry piece in PLoS One looked at news stories driving people to the web – perhaps for more harm. This Health Communication piece looked at confusing news coverage driving people to the web – again with the potential for Good or Harm.
  • 16 years ago this Roper survey
  • Ask for show of hands
  • We have an increasing number of media organizations actually partnering with screening advocates for non-evidence-based promotions. State Fairs big in MN where Victor and I come from…Not sure if this last photo depicts anything about the screening process itself
  • Sometimes if the “Just Say NO” story is going to be told, you have to tell it yourself, as nurse practitioner Veneta Masson did in several media formats
  • The NYT and USNWR were two of the only news orgs to tell this story
  • Like robotic surgery….or
  • Schwitzer keynote to ISDM 2013 Lima, Peru

    1. 1. What Consumer-Centered Journalism Could Do to Promote Patient-Centered Care Gary Schwitzer Publisher
    2. 2. Index of Scientific Quality for Health Reports in the Lay Press - Andy Oxman, Gordon Guyatt et al, J Clin Epidemiol, 1993 “Medical news reports may increase or diminish the willingness of individuals to present themselves for care or for clinical trials, may raise expectations (sometimes falsely), may dash hopes or may provoke alarm (sometimes unnecessarily.”
    3. 3. A Prompt to the Web: The Media & Health Information Seeking Behavior - PLoS One 2012 “longstanding concerns about quality of info in traditional media and growing concern about quality of info available on internet and newer social media.” ------------------------------------ Behavioral Consequences of Conflict-Oriented Health News Coverage: 2009 Mammography Guideline Controversy & Online Information Seeking - Health Comm 2011 “compelling evidence that news coverage can impact people’s health information-seeking behavior, which may be the first step toward actual health behavior.”
    4. 4. We review stories that include claims about… • Medical treatments • Tests • Products • Procedures
    5. 5. 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? • Are there alternative choices? • Is the condition exaggerated? • Is this really a new approach? • Is it available? • Who’s promoting this? • Do they have a financial conflict of interest? 69%  66%  65%  61%  57%  Percent unsatisfactory after 1,900 story reviews – 7 years
    6. 6. News stories often paint a kid-in-candy-store picture of U.S. health care Terrific Risk-free Without a price tag
    7. 7. “75% of Americans pay at least a moderate amount of attention to medical/health news, but only half say they get the right amount to keep them well informed.” • 15% say they get so much such news that they have trouble sorting through all of it. • 58% say they have changed their behavior or taken some action as a result of health care news stories • 76% of them say they “took the advice offered in the news stories” Americans Talk About Science and Medical News: The National Health Council Report Roper Starch survey of 2,256 adults – December 1997
    8. 8. “More than half of the public says that national, local, or cable news is their most important source of health information.” - Kaiser Family Foundation Harvard School of Public Health, 2001
    9. 9. Agenda Building, Source Selection & Health News at Local Television Stations - Science Communication 2004 • > half the local TV health reporters surveyed said they receive most of their ideas from a PR person or press release. • > half said their health reports were sponsored • 13% said the sponsor affected their decision to cover a story but qualitative research suggests some feel obligated to ue the story ideas pitched by their sponsor or use sources only from the sponsor.
    10. 10. If significant % of consumers believe everything they hear in the news, what impact may that have on SDM? • Use of statins for primary prevention in low-risk people? • Choice of robotic surgery for you-name-it? • Screening tests for you-name-it? • Use of coronary calcium scans? • Faith in vaccines? • Attitudes about imaging for low back pain? • Diets? • Advance directives, end-of-life issues? • “Cures..breakthroughs…dramatic…promising” interventions
    11. 11. How many of you have had patients come in asking about such things they heard in the news?
    12. 12. Common flaws: too much stenography – not independent vetting of studies in journals Not ready for prime time – journals meant for conversation among scientists Never intended to be sources of daily news. So if journalists are going to use them that way, they must be aware of the landscape: • retractions, research fraud, fabrication, falsification of data • unpublished data, ghostwriting
    13. 13. Learn from John Ioannidis about pitfalls of steady diet of journal stories PLoS Med 2005; 2(8): e124
    14. 14. Journals complicit in miscommunication • Editors of the HEART Group journals 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]
    15. 15. Reporting on papers presented at scientific meetings - Even more problematic than reporting on journals 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). Tyranny of the anecdote – telling success stories but rarely profiling dropouts, dissatisfied, those who choose conservative route or lifestyle change instead of treatment Common flaws
    16. 16. Ignore or Minimize Potential Harms
    17. 17. “Media’s most troublesome trend” award THE WINNER IS: (often involving this gland) Award for best supporting roles: • Breasts • Lungs • Arteries
    18. 18. “All screening programs do harm; some do good as well.” - Dr. Muir Gray All screening stories would be better if they simply stated:
    19. 19. Anecdotes of those who make a rational choice not to be screened – or those who were screened and regret it The tyranny of the anecdote in screening news stories: Whom do we model?
    20. 20. Prizes for Prostates
    21. 21. What is the quality of the shared decision- making encounter… …as mammograms are promoted with wine, cheese, fondue, chocolate fountains, pink treats, pink lemonade, massages, facials, manicures/ped icures, paraffin hand treatments, beauty consultations, etc. ?
    22. 22. Sharon Begley reported for Newsweek magazine: “Dr. Rita Redberg, professor of medicine at the University of California, San Francisco, and editor of the prestigious Archives of Internal Medicine, has no intention of having a screening mammogram even though her 50th birthday has come and gone. That’s the age at which women are advised to get one. But, says Redberg, they detect too many false positives (suspicious spots that turn out, upon biopsy, to be nothing) and tumors that might regress on their own, and there is little if any evidence that they save lives.”
    23. 23. • Reported on woman with DCIS – ductal carcinoma in situ • Reported on her choice to pursue active surveillance rather than immediate aggressive intervention such as bilateral prophylactic mastectomy • Reported on the shared decision-making program at UCSF that helped her understand the tradeoffs. THAT IS GOOD JOURNALISM
    24. 24. Men who didn’t have SDM prostate screening experience: Tim Glynn, lawyer, age 47 when his doctor “decided I’d have a PSA test without consulting me…..Men should be aware of the truly terrible consequences. As a screening tool, you could do as well by throwing dice on a table.” Profiled by Shannon Brownlee in New York Times magazine piece, “Can Cancer Ever Be Ignored?”
    25. 25. Sharon Begley in Newsweek: “Dr. Stephen Smith, Professor emeritus of family medicine at Brown University School of Medicine, tells his physician not to order a PSA blood test for prostate cancer or an annual electrocardiogram to screen for heart irregularities, since neither test has been shown to save lives. Rather, both tests frequently find innocuous quirks that can lead to a dangerous odyssey of tests and procedures.”
    26. 26. The marketing of screening In 2010 after the National Lung Screening Trial results were released, the American Cancer Society said: "It's only been a few days since researchers released preliminary results… our greatest fear was that forces with an economic interest in the test would sidestep the scientific process and use the release of the data to start promoting CT scans. Frankly, even we are surprised how quickly that has happened."
    27. 27. Interviewed Otis Brawley: “We really need to weigh the harms associated with screening. The scientific community still needs to digest this…A lot of people run out when there is a new announcement and get the new test. We’re very frightened some people are going to be harmed because of this.”
    28. 28. • Began with virtual colonoscopy – after routine physical. • But scan also showed something on kidney, liver, and lungs. • Kidney and liver issues benign after liver biopsy, PET scan and more CT scans. But lung questions led to major lung surgery “I awoke in the recovery room after 5 hours, with a chest tube, a Foley catheter, a subclavian central venous catheter, a nasal oxygen catheter, an epidural catheter, an arterial catheter, subcutaneously administered heparin, a constant infusion of prophylactic antibiotics, and patient-controlled analgesia with intravenously administered narcotics…..Excruciating pain.” • No malignant disease – all “incidentalomas” • Total cost > $50,000 • All precipitated by a screening test
    29. 29. If we don’t improve discussion on screening, we may never improve public dialogue on expensive new technologies – “Gizmo Idolatry”
    30. 30. JOSH BILLINGS (PEN NAME OF HUMORIST HENRY WHEELER SHAW, 1818 – 1885) Why? Because there are harms in making people more hopeful or more frightened than evidence and rational thinking would warrant.
    31. 31. Consumers believe more health care = better care. “Clearly, consumers will revolt if evidence-based efforts are perceived as rationing or as a way to deny them needed treatment. … A necessary condition for effective communication, after all, is to start where your audience is—even if that is not where you hoped or expected it to be.” Evidence that consumers are skeptical about evidence-based health care. Carman KL et al. Health Affairs 2010
    32. 32. Consumer-centered journalism – like patient-centered care – can 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
    33. 33. @Thank you