Patient-Centered Care Unit 6: Communicating Health Risk Welcome to Patient-Centered Care, Communicating Health Risk. This is Lecture a. Lecture a – Overview This material (Comp 25 Unit 6) was developed by Columbia University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0006. This work is licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-sa/4.0/.

Communicating Health Risk Learning Objectives Objective 1: Define risk and its importance in patient-centered care and decision-making Objective 2: Describe the challenges in communicating risks Objective 3: Describe methods of overcoming those challenges through structured communication and IT The objectives for this unit, Communicating Health Risk are: 1) define risk and its importance in patient-centered care and decision-making; 2) describe the challenges in communicating risks; and 3) describe methods of overcoming those challenges through structured communication and IT.

Risk information Basic definition is information about the probability of future outcomes Is encountered in many aspects of our lives, such as the weather forecast, selecting a stock portfolio, and in health care Benefits and harms of two or more treatment options Accuracy of a screening test Life expectancy, morbidity, or mortality risks Risk information can be defined in a number of ways, but a basic definition of risk information is information about the probability of future outcomes. We all encounter risk information in different aspects of our lives, whether it is a weather forecast, selecting a stock portfolio, or in health care when we talk about things like benefits and harms of two or more treatment options. It also comes up in areas about diagnostic testing. For example, when we talk about how accurate a screening test is. Then there are cases where we're just talking in general about things like life expectancy, morbidity, or mortality risks.

Risk communication Definition: The open two way exchange of information and opinion about risk, leading to better understanding and better decisions about clinical management (Edwards, Elwyn, and Mulley, 2002) Two-way exchange is important if decisions about treatment are to reflect the attitudes to risk of the people who will live with the outcomes An important goal of effective risk communication is to facilitate informed shared decision-making For more information on shared decision-making, see unit 7 Risk communication, or the act of conveying risk information, is defined as the open two-way exchange of information and opinion about risk, leading to better understanding and better decisions about clinical management. This definition moves away from notions that information is communicated only from clinician to patient, and that acceptability (or not) of the risk is communicated back. The two way exchange about information and opinion is important if decisions about treatment are to reflect the attitudes to risk of the people who will live with the outcomes. An important goal of communicating risk information is to facilitate “informed” shared decision-making.

“Informed” shared decision-making Process in which an individual understands what a treatment option involves (such as benefits and risks) Individual uses that information to consider their own preferences in decisions Individual participates in the decision at a level that he / she desires Individual makes a decision consistent with his / her preferences Briefly, informed decision-making is the process in which an individual understands what a treatment option involves, including its benefits, risks, limitations, alternatives, and uncertainties. Then he or she uses that information to consider their own preferences in decisions and participates in a decision at a level that he or she desires and finally makes a decision that's consistent with their preferences. Shared decision-making is a process in which providers and patients share in that process.

Risk communication is key to “informed” shared decision-making Risk information constitutes the evidence-based input both patients and providers have to take into account so that they can understand and make a decision about what is the best course of action Risk communication a key step in “informed” shared decision-making because risk information constitutes the evidence-based input both patients and providers have to take into account so that they can understand and make a decision about what is the best course of action. The problem with effective risk communication is that it is difficult.

Making use of risk and quantitative data Increasing amounts of health information are being made available to patients, with the expectation that they can use it to reduce their risks and make better health decisions HIPAA, through HITECH, set the foundational expectation that patients have rights to their health information It is unclear at this time how this information will affect informed shared decision-making Increasing amounts of health information are being made available to patients, with the expectation that they can use it to reduce their risks and make better health decisions. For example, modifications to HIPAA, the Health Insurance Portability and Accountability Act of 1996, through HITECH, the Health Information Technology for Economic and Clinical Health Act of 2009, set the foundational expectation that patients have a right to an electronic copy of their health information. How this information will affect shared decision-making and risk communication is unknown.  

Numeracy and use of quantitative data Ability to use basic probability and mathematical concepts “Degree to which individuals have the capacity to obtain, process, and understand the quantitative health information and services they need to make appropriate health decisions” Includes a constellation of skills needed to function effectively in the health care environment and act appropriately on health care information (Ratzan and Parker, 2000) (Berkman, Sheridan, Donahue, et al, 2011) Numeracy refers to the ability to use basic probability and mathematical concepts and as “’the degree to which individuals can obtain, process, and understand quantitative health information and services they need to make appropriate health decisions”. Further defined, health numeracy includes a constellation of skills necessary to function effectively in the health care environment and act appropriately on health care information.

Implication of low numeracy skills Less able to derive useful meaning from numerical information presented in health materials Is common in the United States 20% of college-educated adults do not know what is a higher risk between 1%, 5%, or 10% Many patients do no understand statistics well enough to use them as part of informed decision-making (Lipkus, Samsa, and Rimer, 2001) People with low numeracy skills are less able to derive useful meaning from the numerical information often presented in health materials, for example, understanding the risk and benefit statistics of a treatment option. Low numeracy is really common in our society. To put the issue into perspective, approximately half of the adults in the United States are unable to accurately calculate a tip, and 20% of college-educated adults do not know what is a higher risk between1%, 5%, or 10%. So, when an provider tells a patient that his or her five-year risk of disease is 12% or if information informs a patient that the risk of a side effect from a drug is 15%, many patients will not understand such statistics well enough to use them as part of making an informed decision.

Provide numeric information instead of words Risks / benefits of options can be described qualitatively with words, “low chance”, or quantitatively with numbers, 1 out of 100 or 1% For both written and verbal information, patients have a more accurate understanding of risk if probabilistic information is presented as numbers rather than words To make quantitative information easier to understand, it is critical that the information be presented in an understandable way (Trevena, Zikmund-Fisher, Edwards, et al, 2013) Risks and benefits of options can be described qualitatively with words such as “low chance” or “very common”, or quantitatively using numbers. With a qualitative description, a patient might be told there is a “low chance” of a side effect from a surgical procedure. The two approaches, however, are not equally effective. For both written and verbal information, patients have a more accurate understanding of risk if probabilistic information is presented as numbers rather than words, even though some may prefer receiving words. One important concern is the lack of agreement about what terms, such as “low risk”, mean. To one person a low risk may be thought of as a risk of 5%, and to a another person a low risk might be 20%. To make quantitative information easier to understand, it is critical that the information be presented in an understandable way.

Risk communication in patient decision aids Patient decision aids, when developed in accordance with International Patient Decision Aid Standards (IPDAS), help patients better understand numerical information Patient decision aids facilitate greater patient involvement, improve decision quality, and increase knowledge about decision options Cochrane systematic review by Stacey, Bennett, Barry, et al. in 2011 found presenting numeric estimates with a decision aid improved accuracy of risk estimates In the Cochrane collaboration review of patient decision aids for treatment and screening decisions, 16 out of the 86 trials measured the effects of including numeric estimates on patients’ understanding. Presenting numeric estimates within a patient decision aid significantly improved the accuracy of risk comprehension compared with not receiving numerical estimates and had a larger effect size when estimates were presented as numbers versus describing them in words.

Unit 6: Communicating Health Risk, Summary – Lecture a, Overview Risk information is information about the probability of future outcomes An important goal of effective risk communication is to facilitate informed shared decision-making Although numeric information is preferred, low numeracy, which is really common in our society, presents challenges to communicating health risk This concludes Lecture a of Communicating Health Risk. To summarize, risk information is defined as information about the probability of future outcomes. An important goal of effective risk communication is to facilitate informed shared decision-making. Although numeric information is preferred, low numeracy, which is really common in our society, presents challenges to communicating health risk.

Communicating Health Risk References – Lecture a Berkman, ND, Sheridan, SL, Donahue, KE, Halpern, DJ, Viera A, Crotty K, Holland A, Brasure, M, Lohr, KN, Harden, E, Tant, E, Wallace, I, & Viswanathan, M. (2011). Health literacy interventions and outcomes: an updated systematic review. Evidence Report/Technology Assesment No. 199. AHRQ Publication Number 11-E006. Rockville, MD. Agency for Healthcare Research and Quality. Edwards, A, Elwyn, G, & Mulley, A. (2002). Explaining risks: turning numerical data into meaningful pictures. BMJ. 324(7341):827–830. Lipkus, IM, Samsa, G, & Rimer, BK. (2001). General performance on a numeracy scale among highly educated samples. Med Decis Making. 21(1):37–44. Ratzan, SC, & Parker, RM. (2000). Introduction. In National Library of Medicine Current Bibliographies in Medicine: Health Literacy. NLM Pub. No. CBM 2000-1. C. R. Selden, M. Zorn, S. C. Ratzan, and R. M. Parker, Editors. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services. Reyna, VF, Nelson, WL, Han, PK, & Dieckmann, NF. (2009). How numeracy influences risk comprehension and medical decision-making. Psychological Bulletin. 135(6), 943–973. No audio.

Communicating Health Risk References – Lecture a (Cont’d) Stacey D, Bennett CL, Barry MJ, Col NF, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Legare F, & Thomson, R. (2011). Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. p. CD001431 Trevena, LJ, Zikmund-Fisher, BJ, Edwards, A, Gaissmaier, W, Galesic, W, Han, PKJ, King, J, Lawson, ML, Linder, SK, Lipkus, I, Ozanne, E, Peters, E, Timmermans, D, & Woloshin, S. (2013). Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. BMC Medical Informatics and Decision Making. 13(Suppl 2):S7. No audio.

Unit 6: Communicating Health Risk, Lecture a – Overview This material was developed by Columbia University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0006. No audio.