International Symposium on Understanding Health Benefits and Risks
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The 1st International Symposium on Understanding Health Benefits and Risks: Empowering Patients and Citizens
Charles Commons Conference Center: Johns Hopkins University
May 28, 2009 – May 29, 2009
This SYMPOSIUM will be held on the campus of Johns Hopkins University in Baltimore, MD, USA on May 28-29, 2009. This two day event will provide a forum for professionals from different disciplines to discuss a timely and increasingly important issue – the communication of health benefits and risks to patients and citizens.
The primary purpose of this Symposium is to open a dialogue among policy-makers, physicians, journalists, nurses, the media, the pharmaceutical industry, government agencies, environmental and social scientists, attorneys and academia on how to clearly communicate health risks to the public.
One of the objectives is to discuss and explore specific approaches which have been effective in assisting the public in comprehending and interpreting health risk information. The overall goal is to come to “common ground” so that the public can begin to participate in decisions regarding what constitute acceptable risks and benefits.
Experts from different fields (e.g., medicine, journalists, risk assessors) have been invited and will discuss concepts and present “case studies” pertinent to the theme of this Symposium. Attendees will have an opportunity to discuss and share their views and perspectives.
The decision to hold this Symposium was based, in large part, on positive responses to our book (The Illusion of Certainty-Health Benefits and Risks) from physicians, journalists, other professionals and the general public. The book attempts to put the complexities of risk analysis in terms the general public can understand, thereby, empowering individuals to make well-informed decisions about their health.
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Recent Submissions
Item How and Why Too Much Health Journalism Lead the Public Astray: Case Studies from a Former Medical Reporter.(2009-11-20T16:13:03Z) Voiland, AdamEvery day, consumers are bombarded by countless medical stories touting the latest research published in The New England Journal of Medicine, the Journal of the American Medical Association, and other leading medical journals. Occasionally, such articles are true to the state of the science and make honest and thorough efforts to present the complexity of the research, offer context on the findings, and break-down the degree of risk to consumers in a concise and accessible fashion. More often, however, consumers are left with simplistic and misleading news reports that do as much to mislead as to inform. This presentation will look at case studies including prostate cancer, bisphenol A, accident safety, and others to explore how and why mistakes are made in medical news reports and how journalists and scientists can work together more effectively to prevent them.Item The Protestant Reformation in Health Communication: Why Science Needs A Standard Way To Talk To Non-Scientists(2009-11-20T16:11:05Z) Strauss, StephenMy presentation will discuss how we have embarked on what you might term a Protestant Reformation when it comes to the relationship of doctors to patients. At one time patients went to the priestly doctors with questions and expected him or her to interpret illnesses by consulting holy, Latinate text. The interpretation was necessary both because the texts were difficult to come by – you had to go to a medical school library – and because they were written in what amounted to the patients to be scientific Latin. Now patients go the Internet and consult the texts themselves. Accordingly, when they enter the doctors’ offices patients they more and more expect to be treated as peers. But in order for the information revolution to be truly effective the holy texts – think scientific papers – have to be made more understandable to the lay person. One way of accomplishing this is by translating their most Latin-like elements – statistics – into a language ordinary people can easily understand. In this regard it would make sense for there to be a universal, representational, easy-to-understand statistical language into which the findings of all medical papers are presented when the papers are abstracted on the Internet.Item Judgment Day: What Do We Know About HRT? What Should We Know?(2009-11-20T16:08:54Z) Bluming, Avrum Z.The purpose of clear communication about the possible risks of any medicine or treatment is to help consumers make informed decisions, but much of the professional and journalistic reporting of the data on HRT and health have been anything but clear. In the years from 2002 through 2008, reports from the Women’s Health Initiative (WHI), claiming that Hormone Replacement Therapy (HRT) significantly increases the risks of breast cancer development, cardiac events, Alzheimer’s disease, and stroke, alarmed the public and many health professionals, causing an almost immediate and sharp decline in the numbers of women on HRT. Yet the actual data in the published WHI articles reveal that the findings reported by the principal investigators were often distorted, oversimplified, or wrong. A critical review of available studies that have and have not found a link between HRT and breast cancer, cardiovascular disease, cognitive functioning and improved quality of life will be presented as part of a discussion of how to distinguish important, robust findings from those that are trivial. On this complicated matter, physicians, the media and the general public must be cautious about accepting “findings by press release” in determining whether or not to prescribe or take HRT.Item Foundations for the Illusion of Certainty Pertaining to Health Risks and Benefits(2009-11-20T16:07:08Z) Rifkin, Erik; Bouwer, EdwardHealth benefits and risks are part of our everyday language and get extensive media coverage. Daily we are presented with information about effects from exposure to environmental contaminants and reports from public health and medical groups about the benefits and risks from medical screening tests and drugs. Are these statements accurate? If so, are they meaningful? We seek medical intervention and make dramatic lifestyle changes hoping they will provide benefits. The management of environmental contamination and exposures involves costs. The benefit and risk statements are usually presented as if they are authoritative, definitive, and based on clear and unequivocal evidence. This leads to an illusion of certainty. Risk assessment is a valid and important scientific discipline, but the uncertainty in this process tends to be forgotten. Unfortunately, ignoring uncertainty has serious results: errors of interpretation, communication of misleading information, even dissemination of deceptive statements. The chance of a health benefit or risk can be reported as a relative number or an absolute number. It can be presented as a rate, probability, or the cause of a positive or adverse effect. Since the use of risk assessment has become common-place, proper interpretation of health benefit and risk values is essential. The goal of this presentation is to provide an understanding and appreciation of the risk assessment process and to provide tools to interpret health benefit and risk values objectively. Included will be an explanation of the uncertainty inherent in the assessment of health benefits and risks, as well as an explanation of how communication and characterization can dramatically alter how these benefits and risks are perceived. An innovative and straight-forward visual aid (RCT:Risk Characterization Theater) will be used to explain the benefits of medical screening tests (e.g., mammography, prostate and colorectal cancer screening, cholesterol screening) and drugs (e.g., statins, Vioxx) and the risks associated with exposure to environmental contaminants (e.g., drinking water pathogens and radon). The intent of this presentation is to help patients and their families get more involved in making medical decisions, and citizens face critical questions about the environment. By putting the complexities of risk analysis in terms the general public can relate to, the principles presented in this talk will empower people to make well-informed decisions.Item Overtreated: Why Too Much Care is as Bad as Too Little(2009-11-20T16:04:49Z) Brownlee, ShannonAmericans worry about not getting medical care they need, because they are uninsured or underinsured. They are far less likely to consider the risks of getting unnecessary care, which accounts for 20 to 30 percent of the care delivered in the U.S. Overtreatment puts patients at significant risk of medical error, adverse events, and suffering unnecessary pain and discomfort, especially at the end of life. Overtreatment is also costing us between $600 and $800 billion annually. What are the factors that encourage the delivery of unnecessary care? How can we redesign the system to give patients what they need, when they need it, and no more? And will health care reform efforts in Washington address this issue?Item Understanding the Concept of Acceptable Health Risks and Benefits(2009-11-20T16:03:15Z) Rifkin, ErikThe notion of acceptable health risks or benefits is not easy to define. Acceptable risk is essentially the measure of harm or disease that is considered acceptable by a person or an organization (e.g., EPA, CDC, FDA). Whether a risk is acceptable depends upon the benefits derived from taking the risk, the magnitude of the risk, and various economic, political and social factors. We tend to rely on others when we have to determine acceptable health risks, be they risks from exposure to contaminants, or risks and benefits from screening tests and drugs. We often assume that experts in environmental science, biology, medicine, statistics and other disciplines are more qualified to make decisions as to what constitutes an acceptable health risk or benefit. Why don’t we want to make our own decisions? Largely because there is a prevailing view that acceptable risk values are based on the analysis and interpretation of scientific data and results. But this is simply not the case. Acceptable risks and benefits are based, in large part, on public acceptance, political agenda and economic considerations. It may seem counterintuitive, but there is no science involved in this process. Having the proper data available in a user-friendly format will enable each of us to determine the level of benefits and risks which we are willing to accept. We have a right to this information, and an acknowledgement of this right will serve to empower patients and citizens. This presentation will use specific examples (e.g., cancer screening tests, lowering cholesterol, exposure to environmental contaminants) and a unique graphic (Risk Characterization Theater) to illustrate how patients and citizens can become empowered to determine their own level of acceptable risk.Item Differences in Family and Financial Stress and the Decision to Donate in Black and White Living Renal Donors(2009-11-20T16:01:35Z) Nolan, Marie T.Background: Blacks have one of the highest rates of end stage renal disease in the U.S. but receive living kidney donations at a far lower rate than Whites. Transplant programs in the U.S. work to promote autonomous decision making in living organ donors. However, there may be racial differences in preferences for involving family in important decisions such as donation and in the amount of family stress prior to donation. Purpose: To explore differences in preferred family involvement in the decision to donate and to examine differences in family and financial stress between Black and White kidney donor candidates. Methods: In interviews during donor evaluation, we asked how donors preferred to involve family in the decision to donate. We also measured family stress and family income. Three months after donation we interviewed donors about their satisfaction with their care while in the hospital and after discharge. Results: Among 174 living kidney donors, Blacks who made up 21% of the sample, were younger (p = .01), had higher levels of family stress in the year before donation, p = .01) and were more likely to report a total household annual income of 40,000 or less (p = .001) than Whites. Blacks were more likely to donate to a family member than a non-family member but were more likely to say that they made the decision to donate without family input (p = .01) than Whites. At three months, there were no significant differences in satisfaction with care during and after hospitalization between Blacks and Whites respectively. Conclusions: Transplant professionals should be aware that Black donor candidates may have greater levels of family stress than White donors. The lack of racial differences in the experience of donation may provide some reassurance to Black donor candidates who worry that they might have a more negative experience compared to White donor candidates. Financial risks should be carefully explained or support considered for donors with limited income who might more readily suffer negative financial consequences if recovery takes longer than anticipated.Item The Evolution of the Assessment of Health and Environmental Risks by the U.S. Environmental Protection Agency(2009-11-20T15:59:31Z) Bourdeau, Karl S.The U.S. Environmental Protection Agency (“EPA”) has been at the forefront of human health and ecological risk assessment within the federal government since the 1970s. Over time, EPA’s risk assessment methodology has evolved considerably. In some respects, that methodology has become more “conservative,” e.g., through the evaluation of synergistic and cumulative risks and the focus on additional protection needed for sensitive populations like children. In other respects, EPA’s approach to the assessment of risks from environmental contaminants has become less “conservative,” e.g., by focusing on current and reasonably expected land use and exposures rather than all potential uses and exposures. Throughout this evolution, two common - and related - criticisms of EPA’s use of risk assessment in setting environmental policy and protecting against environmental exposures have been (i) a lack of transparency in how risks and actions to protect against those risks are determined, and (ii) a failure to communicate to the public the uncertainty attendant to EPA’s assessment of risks and the value of the risk reduction achieved in addressing them. The Agency has been criticized in many quarters for its failure to disclose adequately the numerous - and often highly conservative - assumptions upon which its risk assessments typically rest and its inadequate communication of the policy judgments that form the predicate for how much risk EPA considers “acceptable.” This session will address the basis and nature of these criticisms of EPA’s assessment and communication of human health risks associated with environmental contamination and how the Agency has responded to those criticisms.Item A Beach Head on an Untamed Shore--A Physician-Ethicist Addresses a Living Kidney Donor Selection.(2009-11-20T15:57:31Z) Steiner, Robert W.The risks and benefits of living kidney donation are complicated and variable, and potential donors may be driven by emotion or feel pressured to donate. Transplant centers strive to be ethical, but debate continues over appropriate donor selection practices. Improved communication and involvement of potential donors in decision making has resulted from an effort to clarify the ethics of this emotionally charged area by Bernard Gert and myself. Our initial focus on donors with special medical risks led to a selection protocol that recognized a continuum of risk and new donor counseling techniques that were appropriate for all donors. So donors could provide valid informed consent and meet morally acceptable selection standards, explicit risk data were developed in a teachable form. In addition to teaching risk quantitatively (e.g., “1 out of 100”) using stick figure diagrams, we also advocate use of true/false questions for donors and employ structured testing for rational decision-making. This approach has been adopted by some centers and has increased center confidence in donor selection. It also invites a more sympathetic understanding of centers that have been criticized for paternalism when the applicable ethical principles have been unclear or when donation has been thought to be “too risky” because the risks were unknown, not because risks were known to be high.Item Medical Journalism: A Look Inside the Television Tent(2009-11-20T15:55:41Z) Soden, Kevin J.Whether we like it or not, most Americans get a great deal of their medical information from television. This can be both good and bad. Who determines what news gets on TV? Who reports medical news…and how competent are these reporters? Learn the answers to these questions and in the process take a peek inside the television tent. Discover how TV news really works and how television can be a two-edged sword. Find out how stories get on the news and what four factors are important in making news meaningful to viewers. Physicians need to take the lead in communicating important health information to the public especially in the area of risk. Learn what it takes to engage your audience or your patients. In addition, learn the proven techniques the best communicators use to get their key messages across and to appear both warm and credible to those watching. Good communicators are made and not born. Learn the secrets that will make you a great communicator.Item The Psychometric Paradigm Meets The Real World. A View on Risk Perception Psychology and Risk Communication from a Former Journalist(2009-11-20T15:53:49Z) Ropeik, DavidThe challenge of effectively communicating risks and benefits in the area of personal health is complex. Much attention is rightly focused on the tasks of making information clear, and coping with problems of numeracy. But a more profound challenge lies at the heart of this type of risk communication; the challenge of understanding the underlying psychological patterns by which people interpret risk information, and applying that understanding to communicating risk information in ways that are relevant to the affective realities of the patient. Human risk perception is composed of several cognitive components. Some involve conscious reasoning. Others involve subconscious affective responses based not solely on the facts but also on feelings, instincts, values, and life circumstances. The Psychometric Paradigm research of Paul Slovic et. al., and 25 years of experience as a journalist reporting on risk issues, has helped identify key characteristics of risk circumstances that subconsciously raise or lower the degree of concern about the threat. These will be explained and offered as insights into how to communicate about risk more effectively.Item Communicating Benefit and Risk: A View from the Pharmaceutical Industry(2009-11-20T15:50:09Z) Goldhammer, AlanThere is a general expectation among the public that all drugs should be safe for all and result in a favorable clinical outcome. The clinical development process for a new drug is both costly (over $1 billion per successful licensed drug) and lengthy (10-15 years). Despite this investment the complete knowledge of a new drug’s safety and efficacy profile does not emerge until it has been on the market for several years. The Food and Drug Administration (FDA) is consulted during drug development as research protocols to assess benefit and risk are developed. The collected clinical data (as well information on how the drug will be manufactured) is reviewed by the FDA who make a decision based on the expected benefit/risk profile of the drug. The overall assessment of risk is dependent on the benefit (and the severity of the medical indication being treated). The relevant prescribing information for healthcare providers is synthesized in the drug label and this has recently been reformatted by regulation in an attempt to provide better clarity. A wide variety of information is available to patients some of which is regulated by the FDA (patient package inserts, Medication Guides, company-sponsored direct to consumer advertising which also includes drug specific websites) and some that is not (consumer medication information leaflets handed out at the pharmacy, other non-company sponsored Internet sites, blogs, chat rooms, etc.). PhRMA’s research regarding benefit/risk perception and communication will be the topic of this presentation.Item Uninformed Patient Choice: The American Way of Making Medical Decisions(2009-11-20T15:48:03Z) Fowler, Floyd J. Jr.The model of delegating medical decisions to doctors is alive and well in the U.S. When patients describe interactions with physicians around decisions, they clearly are doctor driven. More importantly, most of the “discussion” is aimed at getting the patient to do something: take a pill, get tested, have surgery, rather than weighing the pros and cons. Doctors are by far the main source of information for patients. Only a minority use the Internet to get information for any particular decision, and even those patients that do say the doctor is more important. However they try to get information, patients end up with very little information about the options they face and basically are in no position to exercise an informed choice. They usually do what doctors recommend. Most physicians report that it would be good if patients had good information. However, doctors do not think highly of the information patients are currently getting, and they report that lack of time and patient ability to understand key information are barriers to their trying to inform patients themselves. Finally, there is a variety of opinions among physicians about whether having patients play an active role in decision making is a good idea.Item Decision Making in Geriatrics(2009-11-20T15:44:26Z) Machado, EugenioThe geriatric population has the most extensive use of medical services. Their medical issues are complex and often aggravated by the need for surrogate decision making. The Erickson Health Medical Group’s model of geriatric practice will be described. Broad introduction to decision making in Geriatrics will be presented.Item COMMUNICATING HEALTH INFORMATION TO DISADVANTAGED POPULATIONS(2009-11-20T15:38:36Z) Newman, Sandra; Beacom, Amanda M.