Elissa M. Ozanne

BACKGROUND: Making evidence-based decisions often requires comparison of two or more options. Research-based evidence may exist which quantifies how likely the outcomes are for each option. Understanding these numeric estimates improves patients' risk perception and leads to better informed decision making. This paper summarises current "best practices" in communication of evidence-based numeric outcomes for developers of patient decision aids (PtDAs) and other health communication tools. METHOD: An expert consensus group of fourteen researchers from North America, Europe, and Australasia identified eleven main issues in risk communication. Two experts for each issue wrote a "state of the art" summary of best evidence, drawing on the PtDA, health, psychological, and broader scientific literature. In addition, commonly used terms were defined and a set of guiding principles and key messages derived from the results. RESULTS: The eleven key components of risk communication were: 1) Presenting the chance an event will occur; 2) Presenting changes in numeric outcomes; 3) Outcome estimates for test and screening decisions; 4) Numeric estimates in context and with evaluative labels; 5) Conveying uncertainty; 6) Visual formats; 7) Tailoring estimates; 8) Formats for understanding outcomes over time; 9) Narrative methods for conveying the chance of an event; 10) Important skills for understanding numerical estimates; and 11) Interactive web-based formats. Guiding principles from the evidence summaries advise that risk communication formats should reflect the task required of the user, should always define a relevant reference class (i.e., denominator) over time, should aim to use a consistent format throughout documents, should avoid "1 in x" formats and variable denominators, consider the magnitude of numbers used and the possibility of format bias, and should take into account the numeracy and graph literacy of the audience. CONCLUSION: A substantial and rapidly expanding evidence base exists for risk communication. Developers of tools to facilitate evidence-based decision making should apply these principles to improve the quality of risk communication in practice.

OBJECTIVE: Measuring the process of shared decision making is a challenge, which constitutes a barrier to research and implementation. The aim of the study was to report the development of CollaboRATE, brief patient-reported measure of shared decision making. METHODS: We used the following stages: (1) item formulation; (2) cognitive interviews; (3) item refinement; and (4) pilot testing of final items. Participants were over 18 years old, recruited from the public areas of the Dartmouth-Hitchcock Medical Center. RESULTS: The key finding of this study is that developing a brief patient-reported measure of shared decision making requires a move away from terms such as 'decisions', 'options' and 'preferences'. Although technically correct, these terms act as barriers. They are often unfamiliar, and they also implicitly assume that patients are willing to take active roles in decision making; whereas patients are often unaware that decisions are required, or have taken place, never mind feel that they could or should have participated in them. CONCLUSION: These methods have allowed us to develop a brief, patient-reported measure of shared decision making that is highly accessible to intended users. PRACTICE IMPLICATIONS: The potential strength of the CollaboRATE will be the ability for completion in less than 30s, and across a range of routine settings.

BACKGROUND: Patient-centered health care is a central component of current health policy agendas. Shared decision making (SDM) is considered to be the pinnacle of patient engagement and methods to promote this are becoming commonplace. However, the measurement of SDM continues to prove challenging. Reviews have highlighted the need for a patient-reported measure of SDM that is practical, valid, and reliable to assist implementation efforts. In consultation with patients, we developed CollaboRATE, a 3-item measure of the SDM process. OBJECTIVE: There is a need for scalable patient-reported measure of the SDM process. In the current project, we assessed the psychometric properties of CollaboRATE. METHODS: A representative sample of the US population were recruited online and were randomly allocated to view 1 of 6 simulated doctor-patient encounters in January 2013. Three dimensions of SDM were manipulated in the encounters: (1) explanation of the health issue, (2) elicitation of patient preferences, and (3) integration of patient preferences. Participants then completed CollaboRATE (possible scores 0-100) in addition to 2 other patient-reported measures of SDM: the 9-item Shared Decision Decision Making Questionnaire (SDM-Q-9) and the Doctor Facilitation subscale of the Patient's Perceived Involvement in Care Scale (PICS). A subsample of participants was resurveyed between 7 and 14 days after the initial survey. We assessed CollaboRATE's discriminative, concurrent, and divergent validity, intrarater reliability, and sensitivity to change. RESULTS: The final sample consisted of 1341 participants. CollaboRATE demonstrated discriminative validity, with a significant increase in CollaboRATE score as the number of core dimensions of SDM increased from zero (mean score: 46.0, 95% CI 42.4-49.6) to 3 (mean score 85.8, 95% CI 83.2-88.4). CollaboRATE also demonstrated concurrent validity with other measures of SDM, excellent intrarater reliability, and sensitivity to change; however, divergent validity was not demonstrated. CONCLUSIONS: The fast and frugal nature of CollaboRATE lends itself to routine clinical use. Further assessment of CollaboRATE in real-world settings is required.

BACKGROUND: Shared decision making requires evidence to be conveyed to the patient in a way they can easily understand and compare. Patient decision aids facilitate this process. This article reviews the current evidence for how to present numerical probabilities within patient decision aids. METHODS: Following the 2013 review method, we assembled a group of 9 international experts on risk communication across Australia, Germany, the Netherlands, the United Kingdom, and the United States. We expanded the topics covered in the first review to reflect emerging areas of research. Groups of 2 to 3 authors reviewed the relevant literature based on their expertise and wrote each section before review by the full authorship team. RESULTS: Of 10 topics identified, we present 5 fundamental issues in this article. Although some topics resulted in clear guidance (presenting the chance an event will occur, addressing numerical skills), other topics (context/evaluative labels, conveying uncertainty, risk over time) continue to have evolving knowledge bases. We recommend presenting numbers over a set time period with a clear denominator, using consistent formats between outcomes and interventions to enable unbiased comparisons, and interpreting the numbers for the reader to meet the needs of varying numeracy. DISCUSSION: Understanding how different numerical formats can bias risk perception will help decision aid developers communicate risks in a balanced, comprehensible manner and avoid accidental "nudging" toward a particular option. Decisions between probability formats need to consider the available evidence and user skills. The review may be useful for other areas of science communication in which unbiased presentation of probabilities is important.