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Patient 2008; 1 (3): 147-150 PIONEER PROFILE 1178-1661/08/0003-0147/$48.00/0 © 2008 Adis Data Information BV. All rights reserved. Erik Rifkin, PhD Writer, Researcher, Patient, and Citizen Advocate Jennifer Chang School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, New York, USA health risks from exposure to environmental pollu- tants did not accurately reflect the true nature of these risks. After conducting a review of the litera- ture, he also noted that the communication of medical health risks and benefits suffered from the same problem. In light of this situation, he set out to devise a novel method to convey health-risk infor- mation associated with common medical interven- tions. Rifkin and co-author Edward Bouwer, PhD, a Professor of Environmental Engineering at the Johns Hopkins University in Baltimore, have writ- ten a book, The Illusion of Certainty: Health Bene- fits and Risks, [5] a guide for both patients and practi- Erik Rifkin, PhD, is the president of Rifkin and tioners on evaluating health risks and benefits asso- Associates, an environmental consulting firm in ciated with medical procedures, with an emphasis Baltimore, Maryland, USA. Erik holds a PhD in on the degree of uncertainty attributed to many of Zoology, and began his career as a research scientist the decisions made in the medical profession. To- characterizing pathogens in molluscs. [1] As a con- gether, they have devised a graphic image or tool for sultant, he provided advice and guidance on human relaying risk and benefit information associated health and ecological risk assessment to federal and with common medical procedures such as mam- state environmental regulatory agencies, including mography, prostate cancer screening, and choles- the Environmental Protection Agency (EPA), and terol-lowering medications, to the general public. the Maryland Department of the Environment. His They tried to come up with a familiar and easily work focused on assessing toxicity from exposure to understood image that would illustrate health risks environmental contaminants in soil, water, and air, to humans and aquatic organisms. He has written and benefits – the selected graphic was called the numerous articles on dioxin toxicity [2-4] and risks ‘risk characterization theater,’ which situates a pa- from exposure to chromium. tient in a hypothetical theater of risk for any given clinical outcome. It is a technique that has the poten- Over the years, it became apparent to Erik that tial to accurately display risk information in terms of the characterization and communication of human

Erik Rifkin, PhD

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Page 1: Erik Rifkin, PhD

Patient 2008; 1 (3): 147-150PIONEER PROFILE 1178-1661/08/0003-0147/$48.00/0

© 2008 Adis Data Information BV. All rights reserved.

Erik Rifkin, PhDWriter, Researcher, Patient, and Citizen Advocate

Jennifer Chang

School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, New York, USA

health risks from exposure to environmental pollu-tants did not accurately reflect the true nature ofthese risks. After conducting a review of the litera-ture, he also noted that the communication ofmedical health risks and benefits suffered from thesame problem. In light of this situation, he set out todevise a novel method to convey health-risk infor-mation associated with common medical interven-tions.

Rifkin and co-author Edward Bouwer, PhD, aProfessor of Environmental Engineering at theJohns Hopkins University in Baltimore, have writ-ten a book, The Illusion of Certainty: Health Bene-fits and Risks,[5] a guide for both patients and practi-Erik Rifkin, PhD, is the president of Rifkin andtioners on evaluating health risks and benefits asso-Associates, an environmental consulting firm inciated with medical procedures, with an emphasisBaltimore, Maryland, USA. Erik holds a PhD inon the degree of uncertainty attributed to many ofZoology, and began his career as a research scientistthe decisions made in the medical profession. To-characterizing pathogens in molluscs.[1] As a con-gether, they have devised a graphic image or tool forsultant, he provided advice and guidance on humanrelaying risk and benefit information associatedhealth and ecological risk assessment to federal andwith common medical procedures such as mam-state environmental regulatory agencies, includingmography, prostate cancer screening, and choles-the Environmental Protection Agency (EPA), andterol-lowering medications, to the general public.the Maryland Department of the Environment. HisThey tried to come up with a familiar and easilywork focused on assessing toxicity from exposure tounderstood image that would illustrate health risksenvironmental contaminants in soil, water, and air,

to humans and aquatic organisms. He has written and benefits – the selected graphic was called thenumerous articles on dioxin toxicity[2-4] and risks ‘risk characterization theater,’ which situates a pa-from exposure to chromium. tient in a hypothetical theater of risk for any given

clinical outcome. It is a technique that has the poten-Over the years, it became apparent to Erik thattial to accurately display risk information in terms ofthe characterization and communication of human

Page 2: Erik Rifkin, PhD

148 Chang

absolute, rather than relative, risk measurements, companies, and medical and scientific publicationsbased on available scientific data. often relate risk in terms of a relative percentage

change, which does not inform the audience of the1. A Parent’s Dilemma sample size of a medical study. For example, if a

medical study reports a 200% increase in the num-Although Erik’s professional work has largelyber of deaths due to a certain disease, it is impossiblefocused on devising assessment methods for deter-to know whether the 200% signifies two additionalmining toxicity, and communicating environmentaldeaths in a sample size of three, or a change fromrisk information, his work in healthcare also derivesone to three in a million. The increased relative riskfrom his personal experiences as a father. In 1980, aof death is 200% in either case. These methods oflump was discovered on the calf of Jason Rifkin, hisreporting information, especially in the mass media,7-year-old son. Erik and his wife, Elaine, were re-have the potential to create unnecessary panic. Inferred to an orthopedic surgeon for immediate care.The Illusion of Certainty,[5] Erik and co-author Ed-While waiting anxiously for their appointment, Erikward Bouwer explain that this particular lapse inwas struck by the general lack of scientific data oncommunicating health-risk information to the publicwhat this lump meant – and literature at the timerequires novel methods for conveying risk informa-indicated a plethora of possibilities: perhaps a cyst,tion to patients.or a benign adipose tumor, or a fatty deposit, or a

cancerous growth.[5] Although the surgeon recom-3. A Visual Solutionmended immediate surgery, Erik and Elaine were

faced with a formidable choice. Prior to imaging As mentioned above, Erik envisions a more evi-techniques such as magnetic resonance imaging dence-based dialogue between patients and provi-(MRI), there was little data on the adverse risks of ders, and has created a novel graphical representa-surgery versus the risk of the lump being malignant. tion of changes in absolute risk for any givenWas the risk of cancer 1 in 1 000 000? The chance medical procedure, or data finding, of a scientificof nerve damage from surgery 1 in 100? Or some- medical study. The graphic is a 1000-seat risk char-where in between? In a move that led to weeks of acterization theater, which represents a random sam-anxiety and self-doubt, Erik and his wife opted not pling of a given population of 1000 people. Dark-to agree with surgery, a choice that ran counter to the ened seats represent total deaths in a population duesurgeon’s advice. to a disease or medical condition (or benefits from

Weeks later, Jason Rifkin’s lump ruptured, re- drugs or screening tests), compared with either aleasing the fluid that had been contained in the cyst. normal population or an untreated population ofHis parents’ judgment had served him well, al- diseased individuals. The conditions of the graphicthough the surgeon later said that he would not may be manipulated according to the variables of achange his advice if the same incident were to occur study. One example of a correlational study[6] ofagain. serum cholesterol and premature death from corona-

ry heart disease is shown in figure 1.2. Current Methods of Conveying RiskThere are two ways to look at the diagram in

One of the central weaknesses in current methods figure 1, from the patient’s perspective. One choicefor reporting health-risk information is the heavy is to elect to take a cholesterol-lowering medicationreliance on communicating relative rather than ab- to prevent the 1 in 1000 additional deaths annuallysolute risk. Newspaper reports, pharmaceutical due to significantly elevated cholesterol level. An-

© 2008 Adis Data Information BV. All rights reserved. Patient 2008; 1 (3)

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Pioneer Profile: Erik Rifkin 149

medicine. Rather, it is based on a value judgment onhow comfortable a patient is with taking on the riskof a negative outcome, or the chance to be cured of apathological condition. Do the risks, in the patient’sview, outweigh the benefits? In this light, the role ofthe physician becomes akin to an educator through-out this decision-making process – neither an ulti-mate arbiter, nor an oracle. For, as difficult as it isfor some doctors to admit, there is as much uncer-tainty in the medical sciences as in any other scien-tific endeavor. As one observer has written of Rifkinand Bouwer’s work, “the theme throughout the bookis how much uncertainty in research is acceptable toenable decision making, and how this uncertaintyshould be made more explicit when results are beingdescribed to the public.”[9] With the introduction of amore accessible graphic, the art of medicine may

Fig. 1. Of 1000 people with a significantly elevated mean totalserum cholesterol level of 280 mg/dL, there will be one additionaldeath per year from coronary heart disease (represented by asingle darkened seat) compared with 1000 people with an essen-tially healthy mean total serum cholesterol level (210–220 mg/dL).

move towards one where the choices for medicalother choice is to elect not to take the cholesterol- intervention are clearly relayed, and a patient’s deci-lowering medication, due to possible adverse effects sions are heard.(and/or costs) that have been reported.[7]

The potential for the risk characterization theaterFigure 1 may be contrasted with figure 2, which to positively impact the way communities receive

shows the data of the Seven Countries Study,[8] alongitudinal study on the association of cigarettesmoking with an elevated risk of mortality, in theform of a risk characterization theater.

In both cases, it is in the best interest of publichealth officials to reduce the number of individualswith elevated cholesterol or cigarette smoking be-havior. However, the choice to either lower one’scholesterol, or quit smoking, must be a partnershipbetween healthcare practitioners and patients. Afterbeing informed of the health risks, benefits, andlevel of uncertainty associated with any course ofaction, the final decision regarding acceptable risksand/or medical intervention should rest with thepatient.

4. With Knowledge Comes Responsibility

The decision to elect or abstain from a medicalprocedure, in the end, is not based on science or

Fig. 2. The Seven Countries Study[8] – the darkened seats in thistheater of male smokers represent the 198 extra deaths observedover 25 years compared with a theater of male non-smokers. Ofthese 198 extra deaths, 52 were from heart disease, 49 were fromlung cancer, 40 were from other kinds of cancer, 21 were fromchronic obstructive pulmonary disease, and the remaining 36 werefrom a variety of other causes.

© 2008 Adis Data Information BV. All rights reserved. Patient 2008; 1 (3)

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150 Chang

3. Rifkin E, LaKind J. Dioxin bioaccumulation: key to a sound riskand interpret health-risk information extends be-assessment methodology. J Toxicol Environ Health 1991; 33:

yond the doctor’s office. The risk characterization103-12

theater is a method for relaying risk information in4. Rifkin E, Bouwer E. A proposed approach for deriving national

absolute values and the sample sizes of studies on sediment criterion for dioxin. Environ Sci Technol 1994; 14

(9): 441-3which current medical practices are based. The5. Rifkin E, Bouwer E. The illusion of certainty: health benefitsmethod improves the autonomy of the patient, and

and risks. New York: Springer Science and Business Media,allows patients to question the degree of uncertainty2007in many common medical decisions – such as the

6. Stamler J, Wentworth D, Neaton JD. Is the relationship betweensurvival benefit of electing for a screening exam,

serum cholesterol and risk of premature death from coronarywhich may not have sufficient epidemiological evi- heart disease continuous and graded? Findings in 356 222

dence upon which to base decisions. Better commu- primary screenees of the Multiple Risk Factor Intervention

Trial (MRFIT). JAMA 1986; 256 (2): 2823-8nication of health risks and benefits, and allowing7. Golomb BA, Criqui MH, White H, et al. Conceptual founda-patients to take charge of their own healthcare and

tions of the UCSD statin study: a randomized controlled trialmake judgments for their own bodies based on relia-assessing the impact of statins on cognition, behavior, and

ble and clearly presented data, empowers the patientbiochemistry. Arch Intern Med 2004; 164 (2): 153-62

to become his or her own best provider. 8. Jacobs DR, Adachi H, Mulder I, et al. Cigarette smoking and

mortality risk: twenty-five-year follow-up of the Seven Coun-

tries Study. Arch Intern Med 1999; 159: 733-40

9. Jarvelin M. The illusion of certainty: health benefits and risksReferences[review]. N Engl J Med 2008 Mar; 358: 10

1. Rifkin E, Cheng T. The origin, structure and histochemicalcharacterization of encapsulating cysts in the oyster Crassos-trea virginica parasitized by the cestode Tyocephalum sp. Correspondence: Jennifer Chang, School of Medicine andJ Invertebr Pathol 1968; 10: 54-64

Biomedical Sciences, University at Buffalo, Buffalo, NY2. LaKind J, Rifkin E. Current method for setting dioxin limits in

14215, USA.water requires reexamination. Environ Sci Technol 1990; 24(7): 963-5 E-mail: [email protected]

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