The Effect of Framing and Placement on Linkage Consent.

Numerous surveys link interview data to administrative records, conditional on respondent consent, in order to explore new and innovative research questions. Optimizing the linkage consent rate is a critical step toward realizing the scientific advantages of record linkage and minimizing the risk of linkage consent bias. Linkage consent rates have been shown to be particularly sensitive to certain design features, such as where the consent question is placed in the questionnaire and how the question is framed. However, the interaction of these design features and their relative contributions to the linkage consent rate have never been jointly studied, raising the practical question of which design feature (or combination of features) should be prioritized from a consent rate perspective. We address this knowledge gap by reporting the results of a placement and framing experiment embedded within separate telephone and Web surveys. We find a significant interaction between placement and framing of the linkage consent question on the consent rate. The effect of placement was larger than the effect of framing in both surveys, and the effect of framing was only evident in the Web survey when the consent question was placed at the end of the questionnaire. Both design features had negligible impact on linkage consent bias for a series of administrative variables available for consenters and non-consenters. We conclude this research note with guidance on the optimal administration of the linkage consent question.

The role of perceived benefits and costs in patients' medical decisions.

BACKGROUND: Many decisions can be understood in terms of actors' valuations of benefits and costs. The article investigates whether this is also true of patient medical decision making. It aims to investigate (i) the importance patients attach to various reasons for and against nine medical decisions; (ii) how well the importance attached to benefits and costs predicts action or inaction; and (iii) how such valuations are related to decision confidence. METHODS: In a national random digit dial telephone survey of U.S. adults, patients rated the importance of various reasons for and against medical decisions they had made or talked to a health-care provider about during the past 2 years. Participants were 2575 English-speaking adults age 40 and older. Data were analysed by means of logistic regressions predicting action/inaction and linear regressions predicting confidence. RESULTS: Aggregating individual reasons into those that may be regarded as benefits and those that may be regarded as costs, and weighting them by their importance to the patient, shows the expected relationship to action. Perceived benefits and costs are also significantly related to the confidence patients report about their decision. CONCLUSION: The factors patients say are important in their medical decisions reflect a subjective weighing of benefits and costs and predict action/inaction although they do not necessarily indicate that patients are well informed. The greater the difference between the importance attached to benefits and costs, the greater patients' confidence in their decision.

Informed Consent for Web Paradata Use.

Survey researchers are making increasing use of paradata - such as keystrokes, clicks, and timestamps - to evaluate and improve survey instruments but also to understand respondents and how they answer surveys. Since the introduction of paradata, researchers have been asking whether and how respondents should be informed about the capture and use of their paradata while completing a survey. In a series of three vignette-based experiments, we examine alternative ways of informing respondents about capture of paradata and seeking consent for their use. In all three experiments, any mention of paradata lowers stated willingness to participate in the hypothetical surveys. Even the condition where respondents were asked to consent to the use of paradata at the end of an actual survey resulted in a significant proportion declining. Our research shows that requiring such explicit consent may reduce survey participation without adequately informing survey respondents about what paradata are and why they are being used.

Incentives for college student participation in web-based substance use surveys.

The purpose of this study was to examine the effects of two incentive conditions (a $10 pre-incentive only vs. a $2 pre-incentive and a $10 promised incentive) on response rates, sample composition, substantive data, and cost-efficiency in a survey of college student substance use and related behaviors. Participants were 3000 randomly-selected college students invited to participate in a survey on substance use. Registrar data on all invitees was used to compare response rates and respondents, and web-based data collection on participants was used to compare substantive findings. Participants randomized to the pre-incentive plus promised incentive condition were more likely to complete the survey and less likely to give partial responses. Subgroup differences by sex, class year, and race were evaluated among complete responders, although only sex differences were significant. Men were more likely to respond in the pre-incentive plus promised incentive condition than the pre-incentive only condition. Substantive data did not differ across incentive structure, although the pre-incentive plus promised incentive condition was more cost-efficient. Survey research on college student populations is warranted to support the most scientifically sound and cost-efficient studies possible. Although substantive data did not differ, altering the incentive structure could yield cost savings with better response rates and more representative samples.

Deficits and variations in patients' experience with making 9 common medical decisions: the DECISIONS survey.

BACKGROUND: Although many researchers have examined patient involvement and patient-provider interactions within specific clinical environments, no nationally representative data exist to characterize patient perceptions of decision making and patient-provider communications across multiple common medical decisions. OBJECTIVE: To identify deficits and variations in the patient experience of making common medical decisions about initiation of prescription medications for hypertension, hypercholesterolemia, or depression; screening tests for colorectal, breast, or prostate cancer; and surgeries for knee or hip replacement, cataracts, or lower back pain, as well as to identify factors associated with patient confidence in the decisions. SETTING: National sample of US adults identified by random-digit dialing. DESIGN: Cross-sectional survey conducted from November 2006 to May 2007. PARTICIPANTS: Included 2473 English-speaking adults age 40 and older who reported undertaking 1 or more of the above 9 medical actions or discussing doing so with a health care provider within the past 2 years. MEASUREMENTS: Patients reported who initiated discussions and made the final decisions, how much discussion of pros and cons occurred, whether they were asked about their preferences, and their confidence that the decision "was the right one." RESULTS: The proportion of patient-driven decisions varied significantly across decisions (range: blood pressure: 16% to knee/hip replacement: 48%). Most patients (78%-85%) reported that providers made a recommendation, and such recommendations generally favored taking medical action. Fewer patients reported that providers asked them about their preferences (range: colon cancer screening: 34% to knee/hip replacement: 80%) or discussed reasons not to take action (range: breast cancer screening: 20% to lower back surgery: 80%). Decision confidence was higher among patients who reported primarily making the decision themselves (odds ratio [OR] = 14.6, P < 0.001) or having been asked for their preference (OR = 1.32, P < 0.01) and was lower among patients whose patient-provider discussions included cons (OR = 0.74, P = 0.008). LIMITATIONS: Recall biases may affect patients' memories of their decision-making processes. CONCLUSIONS: DECISIONS participants reported wide variations in the proportion of discussions that included a conversation about reasons not to take action or a conversation about patients' preferences about what they would like to do. These factors appear directly related to patients' confidence that the decision was "right."

How does feeling informed relate to being informed? The DECISIONS survey.

BACKGROUND: An important part of delivering high-quality, patient-centered care is making sure patients are informed about decisions regarding their health care. The objective was to examine whether patients' perceptions about how informed they were about common medical decisions are related to their ability to answer various knowledge questions. METHODS: A cross-sectional survey was conducted November 2006 to May 2007 of a national sample of US adults identified by random-digit dialing. Participants were 2575 English-speaking US adults aged 40 and older who had made 1 of 9 medication, cancer screening, or elective surgery decisions within the previous 2 years. Participants rated how informed they felt on a scale of 0 (not at all informed) to 10 (extremely well-informed), answered decision-specific knowledge questions, and completed standard demographic questions. RESULTS: Overall, 36% felt extremely well informed (10), 30% felt well informed (8-9), and 33% felt not at all to somewhat informed (0-7). Multivariate logistic regression analyses showed no overall relationship between knowledge scores and perceptions of being extremely well informed (odds ratio [OR] = 0.94, 95% confidence interval [CI] 0.63-1.42, P = 0.78). Three patterns emerged for decision types: a negative relationship for cancer screening decisions (OR = 0.58, CI 0.33-1.02, P = 0.06), no relationship for medication decisions (OR = 0.99, CI 0.54-1.83, P = 0.98), and a positive relationship for surgery decisions (OR = 3.07, 95% CI 0.90-10.54, P = 0.07). Trust in the doctor was associated with feeling extremely well-informed for all 3 types of decisions. Lower education and lower income were also associated with feeling extremely well informed for medication and screening decisions. Retrospective survey data are subject to recall bias, and participants may have had different perspectives or more factual knowledge closer to the time of the decision. CONCLUSIONS: Patients facing common medical decisions are not able to accurately assess how well informed they are. Clinicians need to be proactive in providing adequate information to patients and testing patients' understanding to ensure informed decisions.

Patients' knowledge about 9 common health conditions: the DECISIONS survey.

BACKGROUND: To make informed decisions, patients must have adequate knowledge of key decision-relevant facts. OBJECTIVE: To determine adults' knowledge about information relevant to common types of medication, screening, or surgery decisions they recently made. SETTING: National sample of US adults identified by random-digit dialing. DESIGN: Cross-sectional survey conducted between November 2006 and May 2007. PARTICIPANTS: A total of 2575 English-speaking adults aged 40 y or older who reported having discussed the following medical decisions with a health care provider within the previous 2 y: prescription medications for hypertension, hypercholesterolemia, or depression; screening tests for colorectal, breast, or prostate cancer; or surgeries for knee/hip replacement, cataracts, or lower back pain. MEASUREMENTS: Participants answered knowledge questions and rated the importance of their health care provider, family/friends, and the media as sources of information. RESULTS: Accuracy rates varied widely across questions and decision contexts. For example, patients considering cataract surgery were more likely to correctly estimate recovery time than those patients considering lower back pain or knee/hip replacement (78% v. 29% and 39%, P < 0.001). Similarly, participants were more knowledgeable of facts about colorectal cancer screening than those who were asked about breast or prostate cancer. Finally, respondents were consistently more knowledgeable on comparable questions about blood pressure medication than cholesterol medication or antidepressants. The impact of demographic characteristics and sources of information also varied substantially. For example, blacks had lower knowledge than whites about cancer screening decisions (odds ratio [OR] = 0.57; 95% confidence interval [CI] = 0.43, 0.75; P = 0.001) and medication (OR = 0.77; 95% CI = 0.60, 0.97; P = 0.03) even after we controlled for other demographic factors. The same was not true for surgical decisions. LIMITATIONS: The questions did not measure all knowledge relevant to informed decision making, were subject to recall biases, and may have assessed numeracy more than knowledge. CONCLUSIONS: Patient knowledge of key facts relevant to recently made medical decisions is often poor and varies systematically by decision type and patient characteristics. Improving patient knowledge about risks, benefits, and characteristics of medical procedures is essential to support informed decision making.

Use of the Internet and ratings of information sources for medical decisions: results from the DECISIONS survey.

BACKGROUND: The rise in Internet use for seeking health information raises questions about the role the Internet may play in how patients make medical decisions. OBJECTIVE: To examine Internet use and perceived importance of different sources of information by patients making 9 specific medical decisions covering prescription medication initiation, cancer screening, and elective surgery. SETTING: National sample of US adults identified by random-digit dialing. DESIGN: Cross-sectional survey conducted between November 2006 and May 2007. PARTICIPANTS: The final sample comprised 2575 English-speaking US adults aged 40 y and older who had either undergone 1 of 9 medical procedures or tests or talked with a health care provider about doing so during the previous 2 y. MEASUREMENTS: Participants indicated if they or other family members used the Internet to seek information related to each of the specific medical decisions and rated how important the health care provider, the Internet (if used), family and friends, and the media (newspapers, magazines, and television) were in providing information to help make the medical decision. RESULTS: Use of the Internet for information related to specific decisions among adults 40 y and older was generally low (28%) but varied across decisions, from 17% for breast cancer screening to 48% for hip/knee replacement. Internet use was higher at younger ages, rising from 14% among those aged 70 y and older to 38% for those aged 40 to 49 y. Internet users consistently rated health care providers as the most influential source of information for medical decisions, followed by the Internet, family and friends, and media. LIMITATIONS: Telephone surveys are limited by coverage and nonresponse. The authors excluded health-related Internet use not associated with the 9 target decisions. CONCLUSIONS: A minority of patients reported using the Internet to make specific common medical decisions, but use varied widely by type of decision. Perhaps reflecting perceived risk and uncertainty, use was lowest for screening decisions and highest for surgical decisions.

Communicating disclosure risk in informed consent statements.

For several years, we have experimented with various ways of communicating disclosure risk and harm to respondents in order to determine how these affect their willingness to participate in surveys. These experiments, which used vignettes administered to an online panel as well as a mail survey sent to a national probability sample, have demonstrated that (a) the probability of disclosure alone has no apparent effect on people's willingness to participate in the survey described, (b) the sensitivity of the survey topic has such an effect, and (c) making explicit the possible harms that might result from disclosure also reduces willingness to participate, in both the vignette and the mail experiments. As a last study in this series, we experimented with different ways of describing disclosure risk in informed consent statements that might more plausibly be used in real surveys, again using vignettes administered to an online panel. As suggested by our earlier work, we found that the precise wording of the confidentiality assurance had little effect on respondents' stated willingness to participate in the hypothetical survey described. However, the experimental manipulations did have some effect on perceptions of the risks and benefits of participation, suggesting that they are processed by respondents. And, as we have found in our previous studies, the topic of the survey has a consistent and statistically significant effect on stated willingness to participate. We explore some implications of these findings for researchers seeking to provide adequate information to potential survey respondents without alarming them unnecessarily.

The DECISIONS study: a nationwide survey of United States adults regarding 9 common medical decisions.

BACKGROUND: Patient involvement is required before patients' preferences can be reflected in the medical care they receive. Furthermore, patients are a vital link between physicians' assessments of patients' needs and actual implementation of appropriate care. Yet no study has specifically examined how and when a representative sample of patients considered, discussed, and made medical decisions. OBJECTIVE: To identify decision prevalence and decision-making processes regarding 1) initiation of prescription medications for hypertension, hypercholesterolemia, or depression; 2) screening tests for colorectal, breast, or prostate cancer; and 3) surgeries for knee or hip replacement, cataracts, or lower back pain. DESIGN: Computer-assisted telephone interview survey. SETTING: Nationally representative sample of US adults in households with telephones. PARTICIPANTS: 3010 English-speaking adults age 40 and older identified using a stratified random sample of telephone numbers. MEASUREMENTS: Estimated prevalence of medical decisions, defined as the patient having initiated medications, been screened, or had surgery within the past 2 years or having discussed these actions with a health care provider during the same interval, as well as decision-specific data regarding patient knowledge, attitudes and patient-provider interactions. RESULTS: 82.2% of the target population reported making at least 1 medical decision in the preceding 2 years. The proportion of decisions resulting in patient action varied dramatically both across decision type (medications [61%] v. screening [83%] v. surgery [44%]; P < 0.001), and within each category (e.g., blood pressure medications [76%] v. cholesterol medications [55%] vs. depression medications [48%]; P < 0.001). Respondents reported making more decisions if they had a primary care provider or poorer health status and fewer decisions if they had lower education, were male, or were under age 50. Limitations. Retrospective self-reports may incorporate recall biases. CONCLUSIONS: Medical decisions with significant life-saving, quality of life, and cost implications are a pervasive part of life for most US adults. The DECISIONS dataset provides a rich research environment for exploring factors influencing when and how patients make common medical decisions.

The Effect of Question Framing and Response Options on the Relationship between Racial Attitudes and Beliefs about Genes as Causes of Behavior.

Prior research suggests that the attribution of individual and group differences to genetic causes is correlated with prejudiced attitudes toward minority groups. Our study suggests that these findings may be due to the wording of the questions and to the choice of response options. Using a series of vignettes in an online survey, we find a relationship between racial attitudes and genetic attributions when respondents are asked to make causal attributions of differences between racial groups. However, when they are asked to make causal attributions for characteristics shown by individuals, no such relationship is found. The response scale used appears to make less, if any, difference in the results. These findings indicate that the way questions about genetic causation of behavior are framed makes a significant contribution to the answers obtained because it significantly changes the meaning of the questions. We argue that such framing needs to be carefully attended to, not only in posing research questions but also in discourse about genetics more generally.

Experimental Studies of Disclosure Risk, Disclosure Harm, Topic Sensitivity, and Survey Participation.

This article extends earlier work (Couper et al. 2008) that explores how survey topic and risk of identity and attribute disclosure, along with mention of possible harms resulting from such disclosure, affect survey participation. The first study uses web-based vignettes to examine respondents' expressed willingness to participate in the hypothetical surveys described, whereas the second study uses a mail survey to examine actual participation. Results are consistent with the earlier experiments. In general, we find that under normal survey conditions, specific information about the risk of identity or attribute disclosure influences neither respondents' expressed willingness to participate in a hypothetical survey nor their actual participation in a real survey. However, when the possible harm resulting from disclosure is made explicit, the effect on response becomes significant. In addition, sensitivity of the survey topic is a consistent and strong predictor of both expressed willingness to participate and actual participation.

The role of numeracy in informed consent for surveys.

If empirical estimates of disclosure risk are included in informed consent statements for surveys or other forms of research, participants must be able to understand the information provided. Using data from an online vignette-based experiment, this article explores the role that numeracy or quantitative literacy may play in comprehension of disclosure risk. Results suggest that less numerate persons are less sensitive to extreme differences in the disclosure risk described in the hypothetical vignettes.

Do incentives exert undue influence on survey participation? Experimental evidence.

MONETARY INCENTIVES ARE INCREASINGLY used to help motivate survey participation. Research Ethics Committees have begun to ask whether, and under what conditions, the use of monetary incentives to induce participation might be coercive. The article reports research from an online vignette-based study bearing on this question, concluding that at present the evidence suggests that larger incentives do not induce research participants to accept higher risks than they would be unwilling to accept with smaller ones.

Risk of Disclosure, Perceptions of Risk, and Concerns about Privacy and Confidentiality as Factors in Survey Participation.

This article reports on a web-based vignette experiment investigating how likely subjects would be to participate in surveys varying in topic sensitivity and risk of disclosure. A total of 3,672 participants each responded to a series of eight vignettes, along with a variety of background questions, concerns about confidentiality, trust in various institutions, and the like.Vignettes were randomly assigned to respondents, such that each respondent was exposed to four levels of disclosure risk for each level of topic sensitivity (high versus low). Half the sample was assigned to receive a confidentiality statement for all eight vignettes, while the other half received no mention of confidentiality in the vignettes. The order of presentation of vignettes was randomized for each respondent.Respondents were also asked for their subjective perceptions of risk, harm, and social as well as personal benefits for one of the eight vignettes. Adding these questions permits us to examine how objective risk information presented by the researcher relates to the subjective perception of risk by the participant, and to assess the importance of both for their willingness to participate in the surveys described.Under conditions resembling those of real surveys, objective risk information does not affect willingness to participate. On the other hand, topic sensitivity does have such effects, as do general attitudes toward privacy and survey organizations as well as subjective perceptions of risk, harm, and benefits. We discuss the limitations and implications of these findings.

Trends in U.S. Attitudes Toward Genetic Testing, 1990-2004.

This research note examines changes in beliefs and attitudes over a 14-year period, from 1990, when the revolution in genomic science was just beginning, to 2004, the most recent time point for which data are available. The analysis makes clear that there is no simple causal path from changes in technology to changes in values and beliefs, at least over the period of time during which we have been able to track this process. At the same time, claimed awareness about the new technology is slowly and gradually diffusing throughout the society.

Incentives for survey participation when are they "coercive"?

Monetary incentives are increasingly used to help motivate survey participation. This article summarizes several theories underlying the use of incentives and briefly reviews research demonstrating their intended and unintended effects on response rates, sample composition, response bias, and response quality. It also considers the evidence for the effectiveness of incentives in reducing nonresponse bias. Institutional review boards have begun to ask whether, and under what conditions, the use of monetary incentives to induce participation might be coercive and to question the use of such incentives in surveys of "vulnerable" populations, including surveys of injury and violence. The article reviews the ethical principles underlying the requirement for voluntary informed consent as well as current regulations and a broad theoretical and empirical literature bearing on this question, concluding that incentives are never coercive. The question of whether they exert "undue influence" in a specific situation is more difficult, but it may be the wrong question to ask. The article concludes with several recommendations designed to ensure the ethical use of incentives in surveys on violence and injury.

Racial and ethnic variations in knowledge and attitudes about genetic testing.

This study was designed to shed light on whether differences in utilization of genetic testing by African-Americans, Latinos, and non-Hispanic Whites are due primarily to different preferences, or whether they instead reflect other values and beliefs or differential access. It explores the values, attitudes, and beliefs of African-Americans, Latinos, and non-Hispanic Whites with respect to genetic testing by means of a telephone survey of representative samples of these three groups. The study finds clear evidence that Latinos and African-Americans are, if anything, more likely to express preferences for both prenatal and adult genetic testing than White respondents. At the same time, they hold other beliefs and attitudes that may conflict with, and override, these preferences in specific situations. African-Americans and Latinos are also less knowledgeable about genetic testing than non-Hispanic Whites, and they are less likely to have the financial resources or insurance coverage that would facilitate access to testing.