Daniella A. Zipkin, MD; Craig A. Umscheid, MD, MS; Nancy L. Keating, MD, MPH; Elizabeth Allen, MD; KoKo Aung, MD, MPH; Rebecca Beyth, MD, MSc; Scott Kaatz, DO, MSc; Devin M. Mann, MD, MS; Jeremy B. Sussman, MD, MS; Deborah Korenstein, MD; Connie Schardt, MLS; Avishek Nagi, MS; Richard Sloane, MPH; David A. Feldstein, MD
Note: This review was performed by the Society of General Internal Medicine's Evidence-Based Medicine Task Force to inform the development of the Bottom Line evidence summaries available in the Web-only section of the Journal of General Internal Medicine. The Bottom Line evidence summaries are single-page tools that distill current, high-effect research findings for health care providers to facilitate patient discussions. Each summary addresses new evidence relevant to general internal medicine that has been covered in the media and may affect patient care. Summaries visually present key information about the potential benefits and harms of a test or treatment along with a clinical “bottom line” recommendation. They are designed to foster clearer and more accurate communication between patients and their doctors while enhancing patient understanding and satisfaction. To learn more about the Bottom Line evidence summaries, visit www.sgim.org/web-only/bottom-line.
Acknowledgment: The authors thank John Williams, MD, and Eugene Oddone, MD, for conceptual and logistic support and Patricia Duren for assistance with graphic design.
Disclosures: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M14-0295.
Requests for Single Reprints: Daniella A. Zipkin, MD, Duke University Medical Center, Box 2992, Durham, NC 27710; e-mail, email@example.com.
Current Author Addresses: Dr. Zipkin: Duke University Medical Center, Box 2992, Durham, NC 27710.
Dr. Umscheid: Center for Evidence-based Practice, University of Pennsylvania, 3535 Market Street, Mezzanine, Suite 50, Philadelphia, PA 19104.
Dr. Keating: Department of Health Care Policy, Harvard Medical School, 180 Longwood Avenue, Boston, MA 02115.
Dr. Allen: Portland Veterans Affairs Medical Center, P3-Med, 3710 SW US Veterans Hospital Road, Portland, OR 97207.
Dr. Aung: University of Texas Health Science Center, 7703 Floyd Curl Drive, MC 7879, San Antonio, TX 78229.
Dr. Beyth: North Florida/South Georgia Veterans Health System Geriatric Research Education and Clinical Centers T2 (182), 1601 Southwest Archer Road, Gainesville, FL 32608.
Dr. Kaatz: Hurley Medical Center, One Hurley Plaza, Flint, MI 48503.
Dr. Mann: Boston University School of Medicine, 801 Massachusetts Avenue, Suite 470, Boston, MA 02118.
Dr. Sussman: Center for Clinical Management Research, North Campus Research Center, 2800 Plymouth Road, Building 16/343E, Ann Arbor, MI 48109-2800.
Dr. Korenstein: American College of Physicians, 190 N. Independence Mall West, Philadelphia, PA 19106.
Ms. Schardt: School of Library & Information Science, Manning Hall, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599.
Mr. Nagi: Veterans Affairs Medical Center, 508 Fulton Street, Durham, NC 27705.
Mr. Sloane: Center for the Study of Aging, Duke University Medical Center, Box 3003, Durham, NC 27710.
Dr. Feldstein: University of Wisconsin School of Medicine and Public Health, 310 North Midvale Boulevard, Suite 205, Madison, WI 53705.
Author Contributions: Conception and design: D.A. Zipkin, C.A. Umscheid, N.L. Keating, E. Allen, S. Kaatz, D.M. Mann, J.B. Sussman, D. Korenstein, D.A. Feldstein.
Analysis and interpretation of the data: D.A. Zipkin, C.A. Umscheid, N.L. Keating, E. Allen, K. Aung, R. Beyth, S. Kaatz, D.M. Mann, J.B. Sussman, R. Sloane, D.A. Feldstein.
Drafting of the article: D.A. Zipkin.
Critical revision of the article for important intellectual content: D.A. Zipkin, C.A. Umscheid, N.L. Keating, E. Allen, K. Aung, R. Beyth, S. Kaatz, D.M. Mann, J.B. Sussman, D. Korenstein, R. Sloane, D.A. Feldstein.
Final approval of the article: D.A. Zipkin, C.A. Umscheid, N.L. Keating, E. Allen, K. Aung, R. Beyth, S. Kaatz, D.M. Mann, J.B. Sussman, D. Korenstein.
Statistical expertise: J.B. Sussman, R. Sloane.
Administrative, technical, or logistic support: C. Schardt, A. Nagi.
Collection and assembly of data: D.A. Zipkin, C.A. Umscheid, N.L. Keating, E. Allen, K. Aung, R. Beyth, S. Kaatz, D.M. Mann, D. Korenstein, D.A. Feldstein.
Zipkin D., Umscheid C., Keating N., Allen E., Aung K., Beyth R., Kaatz S., Mann D., Sussman J., Korenstein D., Schardt C., Nagi A., Sloane R., Feldstein D.; Evidence-Based Risk Communication: A Systematic Review. Ann Intern Med. 2014;161:270-280. doi: 10.7326/M14-0295
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Published: Ann Intern Med. 2014;161(4):270-280.
Effective communication of risks and benefits to patients is critical for shared decision making.
To review the comparative effectiveness of methods of communicating probabilistic information to patients that maximize their cognitive and behavioral outcomes.
PubMed (1966 to March 2014) and CINAHL, EMBASE, and the Cochrane Central Register of Controlled Trials (1966 to December 2011) using several keywords and structured terms.
Prospective or cross-sectional studies that recruited patients or healthy volunteers and compared any method of communicating probabilistic information with another method.
Two independent reviewers extracted study characteristics and assessed risk of bias.
Eighty-four articles, representing 91 unique studies, evaluated various methods of numerical and visual risk display across several risk scenarios and with diverse outcome measures. Studies showed that visual aids (icon arrays and bar graphs) improved patients’ understanding and satisfaction. Presentations including absolute risk reductions were better than those including relative risk reductions for maximizing accuracy and seemed less likely than presentations with relative risk reductions to influence decisions to accept therapy. The presentation of numbers needed to treat reduced understanding. Comparative effects of presentations of frequencies (such as 1 in 5) versus event rates (percentages, such as 20%) were inconclusive.
Most studies were small and highly variable in terms of setting, context, and methods of administering interventions.
Visual aids and absolute risk formats can improve patients’ understanding of probabilistic information, whereas numbers needed to treat can lessen their understanding. Due to study heterogeneity, the superiority of any single method for conveying probabilistic information is not established, but there are several good options to help clinicians communicate with patients.
Paul Wicks, PhD
Patients Like Me
August 20, 2014
Conflict of Interest:
Paul Wicks is an employee of PatientsLikeMe and holds stock/options in the company. The PatientsLikeMe R&D Team has received research funding (including conference support and consulting fees) from Abbvie, Accorda, AstraZeneca, Avanir, Biogen, Boehringer Ingelheim, Genzyme, Janssen, Johnson & Johnson, Merck, Novartis, Sanofi, and UCB. The PatientsLikeMe R&D team has received research grant funding from Kaiser Permanente, the Robert Wood Johnson Foundation, Sage Bionetworks, The AKU Society, University of Maryland, and University of Michigan.
In their comprehensive review, Zipkin and colleagues critically analysed a range of numerical techniques to describe risk to patients, such as in the case of a risk of side effect from taking a new drug relative to a placebo.
One aspect that often appears missing in discussions of risk, however, is impact. When I'm playing a hand of poker I don't make my decisions on the basis of the % likelihood of winning a given hand, I weigh that up against the potential winnings in front of me, and other less quantifiable variables like the group of friends I'm playing with and the potential logic table of bragging rights that a great hand will afford me.
Conversely when I'm making a decision as a patient, I don't simply look at the % risks of a negative outcome, such as infection or recurrence following a surgical procedure, but since becoming more engaged with my conditions I use the Internet to learn from first-hand accounts of other patients who have been in my shoes. This is important to me, because I have never met anybody else with the same medical condition in person (to my knowledge), nor do I intend to go to a support group for what is a relatively minor (and slightly embarrassing) complaint in the grand scheme of things. While preparing to make a decision about surgery to treat this, I set up a Twitter search and each day saw brief snippets from the lives of other patients like me all around the planet - fellow sufferers in Iran, Sweden, Pakistan, the deep south of the US, all sharing their experiences about recovery from surgery. I would send each a brief message of support and share a link to a comprehensive online resource that I had found helpful.
So when I came to see my surgeon and he dutifully drew out a flowchart of our possible options, A, B, and C, and went through it a second time to ensure I was following along, I was not just thinking in terms of percentages. I was multiplying those percentages by the words, images, and even videos of my fellow sufferers, who each represented some possible future for me should I choose to go down one of their paths. These were no longer just dry statistics on the page, but a choose-your-own-adventure story in which I now had a much more qualitative and emotional feel than my doctor could have provided me. As skilled as he was, he's never had a chunk of flesh cut out of him in quite the way he was offering me - he could tell me the odds but not the impact. Clearly my sample was biased, and the most unpleasant images certainly the most striking, but I certainly felt more informed than if I had not sought out their experiences. Through our work at PatientsLikeMe we have attempted to make it easier for patients to more systematically seek out and find similar patients, but there is still a long way to go. An individual's impression of what "stroke" means to them could vary dramatically based on their understanding, personal experiences, even media exposure to well known cases.
As the authors have cited the IOM report (http://www.iom.edu/~/media/Files/Perspectives-Files/2012/Discussion-Papers/VSRT-Evidence.pdf) on which I collaborated I thought it might also be helpful to highlight a few "information wrappers" which can help the information proffered by a clinician to be more easily received by a patient:
* "Every patient is different"
* "What is proven to work best"
* "The most up-to-date medical evidence, including information about the risks
and benefits, about what works best"
* "Making sure you get the best possible care starts with you and your doctor making the
best decision for you"
* "Understanding the best types of care based on the most recent medical evidence"
* "Your doctor needs to listen to you, understand your needs and concerns, and answer your
The use of such phrases can certainly help patients to appreciate that the information proffered has been done so from a position of thought, consideration, and respect. Finally, though I would also highlight from the same report that while patients who were satisfied with their healthcare certainly endorsed the importance of having the risks and benefits of their options explained, the two most important characteristics were to use clear language that the patient can understand, and "listens to me". In my own case I decided to take the most conservative route and self-manage without surgery. At that point my doctor said the most reassuring thing - that if I ever changed my mind, whether it was next week or next year or next decade, he and his team would always be there for me. It was the best consultation I'd ever experienced and I wish the same for everyone else who walks in my shoes to come.
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