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PCORI at 3 Years

Naomi Aronson, Ethan Basch, Alfred Berg,David Flum, Mark Helfand, John Ioannidis,Michael Lauer, David Meltzer, Brian Mitt-man, Sally Morton, Sebastian Schneeweiss,Jean Slutsky, Mary Tinetti, and Clyde Yancy.

1. Washington AE, Lipstein SH. The Patient-Centered Outcomes Research Institute promoting better information, decisions,

and health. N Engl J Med 2011;365(15):e31.2. Selby JV, Beal AC, Frank L. The Patient-Centered Outcomes Research Institute(PCORI) national priorities for research and

initial research agenda. JAMA 2012;307:1583-4.3. Beal AC. PCORIs first advisory panels:celebrating a talented and diverse group.Washington, DC: Patient-Centered OutcomesResearch Institute, April 8, 2013 (http://www.pcori.org/blog/pcoris-first-advisory-panels-celebrating-a-talented-and-diverse-group/).4. Beal AC, Sheridan S, Schrandt S. PCORIs

engagement awards: a new opportunity tobuild new research partnerships. Washing-ton, DC: Patient-Centered Outcomes Re-search Institute, June 17 2013 (http://www

.pcori.org/blog/pcoris-engagement-awards-a-new-opportunity-to-build-new-research-partnerships/).5. Promising practices of meaningful en-gagement in the conduct of research. Wash-ington, DC: Patient-Centered Outcomes Re-search Institute, September 19, 2013 (http://www.pcori.org/events/promising-practices-of-meaningful-engagement-in-the-conduct

-of-research/).

DOI: 10.1056/NEJMp1313061

Copyright 2014 Massachusetts Medical Society.

Misfearing Culture, Identity, and Our Perceptionsof Health RisksLisa Rosenbaum, M.D.

During my cardiology fellow-

ship, I worked at a womenscardiovascular clinic where weasked every new patient thesame question: What do youthink is the number-one killerof women? Most women saideither breast cancer or heart dis-ease. But Ms. S., a middle-agedwoman with high blood pres-sure and hyperlipidemia, answeredin a way that sticks with me: Iknow the right answer is heartdisease, she said, eyeing me asif facing an irresistible tempta-tion, but Im still going to saybreast cancer.

If helping women understandtheir cardiovascular risk wereabout right answers, I wouldsimply have reiterated the factsabout heart disease that ittakes more womens lives eachyear than all types of cancer

combined (see graphs), that it isin many ways preventable, andthat, despite what many womenbelieve, multivitamins and anti-oxidants do not reduce the risk.But Ms. S.s response short-cir-cuited my statistical litany. Hersense of risk was clearly lessabout fact than about feeling.

Would more facts really address

those feelings?Data on campaigns to educate

women about heart disease rein-forced my sense that our effortsto provide women with the factsabout heart disease were missingsomething critical. Although thefirst decade of educational cam-paigns led to a near doubling ofwomens knowledge about heartdisease, in the past few yearssuch efforts have failed to reapfurther gains. Moreover, persis-tent gaps in perceptions remainamong minority women, who areoften at greatest risk.1

If the next frontier in prevent-ing cardiovascular disease amongwomen is less about disseminat-ing evidence than about under-standing why the evidence maybe hitting a wall, the criticalquestion is why women might

feel more fearful of other diseas-es, particularly breast cancer, de-spite ample evidence suggestingthat heart disease poses a fargreater threat.

Misfearing, the term CassSunstein uses to describe the hu-man tendency to fear instinctivelyrather than factually, is not unique

to womens perceived health

threats.2Decades of research onrisk perception have revealed themany factors feeding our mis-fears and associated perceptions.Tornadoes. Terrorist attacks. Hom-icides. The big, the dramatic, andthe memorable occupy far moreof our worry budget than thethings that kill with far greaterfrequency: strokes, diabetes, heartdisease. But interacting withmany of these fear factors is an-other force we rarely associatewith our individual health per-ceptions: our commitment to ourcultural groups.

Our desire to belong to some-thing bigger than ourselves is asfundamental to our nature as ourdesire for individual success. Hu-man nature is both selfish andgroupish, according to the mor-al psychologist Jonathan Haidt:

Our minds contain a variety ofmental mechanisms that make usadept at promoting our groupsinterests. . . . We are not saints,but we are sometimes good teamplayers.3

If you survived middle school,you know how powerful the de-sire to belong to a group can be.

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But psychologists since Freudhave emphasized that maintain-ing our group identities drives usunconsciously throughout life. Thedesire has particular implicationsfor our health because it shapesthe information we seek andour willingness to accept it.

Scholars such as Dan Kahan,who leads the Cultural CognitionProject at Yale, call our denial, inthis context, identity protectivecognition.4 Kahans researchemphasizes that we often dontjudge empirical data on the basisof accuracy. Rather, we pick andchoose evidence that reinforces

our sense of who we are or ourallegiances to our tribes.

Our group allegiances may bemany. I, for one, am a Jew, anOregonian, and a member of thesmall band of doctors who feardentists (misfearing does not dis-

criminate). I am also a woman.Although being a woman meansdifferent things to different peo-ple, might there be some sharedintuitions about female identitythat shape our interpretation ofhealth-related information andour consequent behavior?

The ongoing controversy sur-rounding mammography screen-ing highlights the clash of iden-tity and data at the social level.

In 2009, the U.S. Preventive Ser-vices Task Force recommendeddecreased frequency of mammog-raphy for most women youngerthan 50 years old, noting thatthe potential harms outweighedthe benefits. Although the recom-mendations were based on anunbiased review of decades worthof data, a public outcry ensued.The recommendations were crit-icized as an assault on womenshealth, and a 2009 USA Todaypoll found that 84% of women35 to 49 years of age planned toignore them.

So intense was the outrageover these evidence-based recom-mendations that a provision wasadded to the Affordable Care Actspecifying that insurers were tobase coverage decisions on theprevious screening guidelines.

Rather than acknowledge thisblatant dismissal of new guide-lines, many political leaders, phy-sicians, and advocacy organiza-tions argued that we simply didnthave enough data to justify thenew recommendations. But datahave shown for years that earlymammography screening doesnt

save lives, just as data show thatpreventing heart disease, throughcertain lifestyle modificationsand appropriate use of medica-tions, does. So why do we resistthese data?

Have pink ribbons and Races

for the Cure so permeated ourculture that the resulting femalesolidarity lends mammography asacred status? Is the issue thatbreast cancer attacks a body partthat is so fundamental to femaleidentity that, to be a woman, onemust join the war on this dis-ease? In an era when womensreproductive rights remain underassault, is reduced screening in-evitably viewed as an attempt to

take something away? Or is theissue one of a tragic story we haveall heard a young womanslife destroyed, the children whowatch her suffer and are then leftbehind?

On the other hand, what is itabout being at risk for heart dis-ease that is emotionally disso-nant for women? Might we viewheart disease as the consequenceof having done something bad,whereas to get breast cancer is tohave something bad happen toyou? In a culture obsessed withthe natural, are risk-reducingmedications anathema to our vi-sion of healthy living? Or are weheld up by our ideal of beauty?We can each summon the im-ages of beautiful young womenwith breast cancer. Where are allthe beautiful women with heart

disease?If the consequences of thesemisfears were limited to the realmof insurance coverage and healthlaw, the answer would be easier:legislate on the basis of fact rath-er than feeling. But although ourlaws can sometimes nudge us to-ward health-promoting behaviors,

Misfearing

Breast cancer Heart disease

Prevalence(millions)

14

2

4

6

0

8

10

12

13

1

3

5

7

9

11

2006 2007 2008 20102009

Mortality(thousands

)

450

50

0

150

250

350

400

100

200

300

2006 2007 2008 20102009

A Prevalence among American Females (18 yr of age)

B Mortality among American Females (all ages)

Prevalence of Breast Cancer and Heart Disease

among Female Americans (Panel A) and Related

Mortality (Panel B).Data are from the Centers for Disease Controland Prevention.




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they cannot tell us what to be-lieve. For a woman to reduce hercardiovascular risk, she first hasto believe it exists. So how mightwe make it easier for women inour society to feel like womenand yet to believe theyre at risk

for heart disease?Although the stigma associat-

ed with heart disease reflects thereality that cigarettes, obesity, andunhealthy behaviors often con-tribute, we may temper the forceof denial by emphasizing that,like cancer, heart disease can alsoresult from bad luck. We canseek effective ways to challengethe dogma that natural is bet-ter, to increase the appeal of tak-

ing medications to control bloodpressure and cholesterol levels.And we can try to move beyonddisease wars toward the creationof communities of women inwhich stories about living withheart disease are as celebrated asstories of surviving breast cancer.

As a recent report from theInstitute of Medicine and the Na-tional Research Council pointsout, we can also prioritize thestudy of how values and groupnorms inform health perceptionsand associated behaviors.5 Thereport explores the reasons why,despite spending more per capitathan any other country, the UnitedStates lags behind other developedcountries in health outcomes, adisparity that affects even the

wealthy and well-insured. Afterdiscussing some clear system-level contributors to poor healthoutcomes, such as lack of accessand poor-quality care, the authorsspeculate about whether a moreupstream root cause exists, one

related to our sense of what itmeans to be an American. Al-though the notion that our socialvalues contribute to our laggingperformance on health metrics iscurrently speculative, calling at-tention to their potential role is acritical f irst step toward motivat-ing investigation and the de-velopment of more targeted in-terventions.

Whether were aware of our

group commitments or not, wecannot shed our deeply rootedherd mentality nor change ourvisceral allegiances to our tribe.Indeed, when I read AngelinaJolies New York Timeseditorial lastMay about her decision to under-go prophylactic double mastec-tomy, my own limbic and cogni-tive systems went to war. Thewoman in me got goose bumps.Shes beautiful and brave,I thought,and I want to be like her.The cardi-ologist in me, however, said, Ohno will this make it even hard-er for us to help women believetheyre at risk for cardiovasculardisease?

Among those of us in thebusiness of evidence-based riskreduction, terms such as social

values and group identities mayelicit a collective squirm. But de-veloping an understanding of howsuch factors inform our percep-tions of disease is critical to im-proving the health of our popula-tion. Certainly, understanding of

ones risk for any disease mustbe anchored in facts. But if wewant our facts to translate intobetter health, we may need to starttalking more about our feelings.

Disclosure forms provided by the authorare available with the full text of this articleat NEJM.org.

From the Philadelphia Veterans Affairs Med-ical Center and the Robert Wood JohnsonFoundation Clinical Scholars Program, Uni-versity of Pennsylvania, Philadelphia.

1. Mosca L, Hammond G, Mochari-Green-berger H, Towfighi A, Albert MA. Fifteen-year trends in awareness of heart disease inwomen: results of a 2012 American HeartAssociation national survey. Circulation 2013;127:1254-63.2. Sunstein CR. Misfearing: a reply. HarvardLaw Review, 2006. U Chicago Law & Eco-nomics, Olin working paper no. 274 (http://ssrn.com/abstract=880123).3. Haidt J. The righteous mind: why goodpeople are divided by politics and religion.New York: Random House, Kindle Edition,2012.4. Kahan DM, Braman D, Gastil J, Slovic P,Mertz CK. Culture and identity-protectivecognition: explaining the white male effect inrisk perception. J Empir Legal Stud 2007;4:465-505. Yale Law School, public law work-ing paper no. 152 (http://ssrn.com/abstract=995634).5. National Research Council. U.S. health ininternational perspective: shorter lives, poor-er health. Washington, DC: National Acade-mies Press, 2013.

DOI: 10.1056/NEJMp1314638

Copyright 2014 Massachusetts Medical Society.

Misfearing




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