Perspectives of Decisional Surrogates and Patients Regarding Critical Illness Genetic Research.

BACKGROUND: Critical illness research is challenging due to disease severity and because patients are frequently incapacitated. Surrogates called upon to provide consent might not accurately represent patient preferences. Though commonplace, genetic data collection adds complexity in this context. We undertook this investigation to understand whether surrogate decision makers would be receptive to permitting participation in a critical illness genetics study and whether their decision making was consistent with that of the patient represented. METHODS: We invited individuals identified as surrogates for critically ill adults, if required, as well as patients once recovered to participate in a survey designed to understand attitudes about genetic research. Associations between dependent (receptivity to participation, concordance of responses) and independent variables were tested using bivariate and multivariate logistic regression analyses. RESULTS: Most of the entire surrogate sample (n=439) reported familiarity with research, including genetic research; tended to view research as useful; and were receptive to allowing their family member participate (with 39.6% and 38.1% stating that this would be "very" and "somewhat likely," respectively) even absent direct benefit. Willingness to participate was similar comparing genetic and non-genetic studies (χ2 [1,n=439]=0.00127, p=0.972), though respondents expressed worry regarding lack of confidentiality of genetic data. Responses were concordant in 70.8% of the 192 surrogate-patient pairs analyzed. In multivariate analysis, African American race was associated with less receptivity to genetic data collection (p<0.05). No factors associated with concordance of surrogate-patient response were identified. CONCLUSIONS: Surrogates' receptivity to critical illness research was not influenced by whether the study entailed collection of genetic data. While more than two-thirds of surrogate-patient responses for participation in genetics research were concordant, concerns expressed regarding genetic data often related to breach of confidentiality. Emphasizing safeguards in place to minimize such breeches might prove an effective strategy for enhancing recruitment.

Does difficulty functioning in the surrogate role equate to vulnerability in critical illness research? Use of path analysis to examine the relationship between difficulty providing substituted judgment and receptivity to critical illness research participation.

PURPOSE: Individuals who struggle to provide substitute judgment for the critically ill often find it challenging to engage in decision making for therapeutic interventions. Although essential to the conduct of research, how these individuals respond to requests for clinical trial participation is poorly understood. METHODS: Survey data collected to examine surrogate attitudes toward research provided the conceptual framework to explore influences on decision making. Path analysis was used to derive the final model (nonlatent, fully recursive, 1 indicator/variable). RESULTS: Surrogates with list-wise complete records (406) were analyzed. The following variables were not retained in the final model: education, income, religiosity, decision-making experience, discussion of patient's wishes, number of individuals assisting with decision making, trust in care providers, difficulty making decisions, and responsibility for decision making. Being white and having experience making treatment decisions for the patient during the current intensive care unit encounter affected the likelihood the surrogate would permit participation in research positively (parameter estimates, 0.281 and 0.06, respectively). No variable reflecting difficulty functioning in the surrogate role was associated with permitting research participation. CONCLUSIONS: We were unable to demonstrate a relationship between perceived difficulty in decision making in the surrogate role and receptivity to clinical trial participation.

Surrogate receptivity to participation in critical illness genetic research: aligning research oversight and stakeholder concerns.

BACKGROUND: Collection of genetic biospecimens as part of critical illness investigations is increasingly commonplace. Oversight bodies vary in restrictions imposed on genetic research, introducing inconsistencies in study design, potential for sampling bias, and the possibility of being overly prohibitive of this type of research altogether. We undertook this study to better understand whether restrictions on genetic data collection beyond those governing research on cognitively intact subjects reflect the concerns of surrogates for critically ill patients. METHODS: We analyzed survey data collected from 1,176 patients in nonurgent settings and 437 surrogates representing critically ill adults. Attitudes pertaining to genetic data (familiarity, perceptions, interest in participation, concerns) and demographic information were examined using univariate and multivariate techniques. RESULTS: We explored differences among respondents who were receptive (1,333) and nonreceptive (280) to genetic sample collection. Whereas factors positively associated with receptivity to research participation were "complete trust" in health-care providers (OR, 2.091; 95% CI, 1.544-2.833), upper income strata (OR, 2.319; 95% CI, 1.308-4.114), viewing genetic research "very positively" (OR, 3.524; 95% CI, 2.122-5.852), and expressing "no worry at all" regarding disclosure of results (OR, 2.505; 95% CI, 1.436-4.369), black race was negatively associated with research participation (OR, 0.410; 95% CI, 0.288-0.585). We could detect no difference in receptivity to genetic sample collection comparing ambulatory patients and surrogates (OR, 0.738; 95% CI, 0.511-1.066). CONCLUSIONS: Expressing trust in health-care providers and viewing genetic research favorably were associated with increased willingness for study enrollment, while concern regarding breach of confidentiality and black race had the opposite effect. Study setting had no bearing on willingness to participate.

Exploring determinants of surrogate decision-maker confidence: an example from the ICU.

This article is an exploratory data analysis of the determinants of confidence in a surrogate decision maker who has been asked to permit an intensive care unit (ICU) patient's participation in genetic research. We pursue the difference between surrogates' and patients' confidence that the surrogate can accurately represent the patient's wishes. The article also explores whether greater confidence leads to greater agreement between patients and surrogates. Our data come from a survey conducted in three hospital ICUs. We interviewed 445 surrogates and 214 patients. The only thing that influences patients' confidence in their surrogate's decision is whether they had prior discussions with him or her; however, there are more influences operating on the surrogate's self-confidence. More confident surrogates are more likely to match their patients' wishes. Patients are more likely to agree to research participation than their surrogates would allow. The surrogates whose response did not match as closely were less trusting of the hospital staff, were less likely to allow patient participation if there were no direct benefits to the patient, had given less thought about the way genetic research is conducted, and were much less likely to have a person in their life who they would trust to make decisions for them if they were incapacitated.

Real-time perspectives of surrogate decision-makers regarding critical illness research: findings of focus group participants.

OBJECTIVE: We undertook the current investigation to explore how the pressures of serving as a surrogate decision-maker (SDM) for an acutely ill family member influence attitudes regarding clinical investigation. METHODS: We conducted a prospective study involving SDMs for critically ill patients cared for in the ICUs of two urban hospitals. Measurements included participation in focus groups designed to explore perceptions of ICU care and clinical research. Audiotapes were transcribed and analyzed to identify common patterns and themes using grounded theory. Demographic and clinical data were summarized using standard statistical methods. RESULTS: Seventy-four SDMs (corresponding to 24% of eligible patients) participated. Most SDMs were women and described long-term relationships with the patients represented. SDMs described their role as "overwhelming," their emotions were accentuated by the fatigue of the ICU experience, and they relied on family members, social contacts, and religion as sources of support. Altruism was reported as a common motivation for potential study participation, a sentiment often strengthened by the critical illness episode. Although research was viewed as optional, some SDMs perceived invitation for research participation as tacit acknowledgment of therapeutic failure. SDMs expressed a preference for observational studies (perceived as low risk) over interventional designs (perceived as higher risk). Trust in the ICU team and the research enterprise seemed tightly linked. CONCLUSIONS: Despite significant emotional duress, SDMs expressed interest in investigation and described multiple factors motivating participation. Consent processes that minimize the effects of anxiety may be one strategy to enhance recruitment.

Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research.

Clinical studies conducted in intensive care units are associated with logistical and ethical challenges. Diseases investigated are precipitous and life-threatening, care is highly technological, and patients are often incapacitated and decision-making is provided by surrogates. These investigations increasingly involve collection of genetic data. The manner in which the exigencies of critical illness impact attitudes regarding genetic data collection is unstudied. Given interest in understanding stakeholder preferences as a foundation for the ethical conduct of research, filling this knowledge gap is timely. The conduct of opinion research in the critical care arena is novel. This brief report describes the development of parallel patient/surrogate decision-maker quantitative survey instruments for use in this environment. Future research employing this instrument or a variant of it with diverse populations promises to inform research practices in critical illness gene variation research.

Tightening conflict-of-interest policies: the impact of 2005 ethics rules at the NIH.

PURPOSE: To determine both the intended and unintended effects of the National Institutes of Health (NIH) 2005 ethics rules by examining changes in publishing rates and the frequency of external relationships among NIH scientists. METHOD: After identifying eligible intramural scientists and administrators from institutes' Web pages and central directories, a mailed survey was administered to 900 NIH research faculty between October 2008 and January 2009 (response rate 70.1%). RESULTS: Eighty percent of respondents believed the NIH ethics rules were too restrictive. Whereas 45% of respondents believed the rules positively impacted the public's trust in the NIH, 77% believed the rules hindered the NIH's ability to complete its mission. Implementation of the ethics rules significantly decreased self-reported government-industry relationships among NIH faculty (from 51.8% to 33.2%, P < .01), including significant drops in consulting (33.1% to 7.8%, P < .01) and scientific advisory board membership (31.5% to 16.0%, P < .01), both of which may be allowed under the new regulations in restricted situations with increased oversight. The policy had limited impact on NIH faculty participation in nonindustrial professional service roles and had no detectable change in publishing behavior (5.29 articles per researcher per year from 2002-2005 versus 5.26 from 2005-2008, P = .88). CONCLUSIONS: The NIH ethics rules accomplished much of what they were intended to do, limiting relationships with industry while maintaining NIH researchers' association with external scientific and professional organizations. However, the rules negatively affected personnel morale and the perceived progress of research.

Factors that influence practitioners' interpretations of evidence from alternative medicine trials: a factorial vignette experiment embedded in a national survey.

BACKGROUND: Clinical trial evidence in controversial areas such as complementary and alternative medicine (CAM) must be approached with an open mind. OBJECTIVE: To determine what factors may influence practitioners' interpretation of evidence from CAM trials. RESEARCH DESIGN: In a mailed survey of 2400 US CAM and conventional medicine practitioners we included 2 hypothetical factorial vignettes of positive and negative research results for CAM clinical trials. Vignettes contained randomly varied journal (Annals of Internal Medicine vs. Journal of Complementary and Alternative Medicine) and CAM treatment type (acupuncture, massage, glucosamine, meditation, and reiki). Response items also included randomly varied patient circumstances-chronic refractory symptoms and the patient requesting CAM. MEASURES: All practitioners rated the effectiveness and their willingness to recommend the therapy for a described patient. We used logistic regression to determine the independent influence of the 4 factors on respondents' effectiveness and legitimacy judgments. RESULTS: A total of 1561 practitioners responded (65%). Relative to Reiki, conventional medicine practitioners were most willing to recommend glucosamine (OR = 3.0; 95% CI [1.6-5.4]), than massage (1.9 [1.1-3.3]), acupuncture (1.3 [0.8-2.2]), and meditation (1.2 [0.7-2.0]). CAM practitioners rated acupuncture as effective more than other CAM therapies (OR = 5.8 [2.6-12.8] compared with Reiki), and were more willing to recommend acupuncture (OR = 12.3 [4.8-31.8]). When presented evidence of inefficacy, CAM practitioners were most willing to recommend acupuncture relative to other CAM therapies (OR = 15.5 [9.0-26.9]). CONCLUSIONS: Practitioners' judgments about CAM trial evidence depend on the type of treatments reported. Confirmation bias may play a role in the clinical translation of new evidence from clinical trials.

Participation of academic scientists in relationships with industry.

Relationships between academic researchers and industry have received considerable attention in the past twenty years. However, current data on the prevalence, magnitude, and trends in such relationships are rare. In a mailed survey of 3,080 academic life science researchers conducted in 2007, we found that 52.8 percent have some form of relationship with industry. Life science faculty with industry research support were more productive than faculty without such support on virtually every measure. However, we also found a significant decrease in industry support of university research, which could have major consequences for the academic life science research sector.

Alternative medicine research in clinical practice: a US national survey.

BACKGROUND: Little is known about whether federally funded complementary and alternative medicine (CAM) research is translating into clinical practice. We sought to describe the awareness of CAM clinical trials, the ability to interpret research results, the acceptance of research evidence, and the predictors of trial awareness among US clinicians. METHODS: We conducted a cross-sectional mailed survey of 2400 practicing US acupuncturists, naturopaths, internists, and rheumatologists. RESULTS: A total of 1561 clinicians (65%) responded. Of the respondents, 59% were aware of at least 1 major CAM clinical trial; only 23% were aware of both trials. A minority of acupuncturists (20%), naturopaths (25%), internists (17%), and rheumatologists (33%) were "very confident" in interpreting research results (P < .001). Fewer acupuncturists (17%) and naturopaths (24%) than internists (58%) and rheumatologists (74%) rated the results of randomized controlled trials as "very useful" (P < .001). Twice as many internists (53%) and rheumatologists (64%) rated patient preferences as "least important" compared with acupuncturists (27%) and naturopaths (31%) (P < .001). In multivariate analyses, for clinicians aware of at least 1 trial, male sex (odds ratio [OR], 1.30 [95% confidence interval {CI}, 1.05-1.62]), prior research experience (OR, 1.45 [95% CI, 1.13-1.86]), institutional or academic practice setting (ORs, 1.98 [95% CI, 1.01-3.91], and 1.23 [95% CI, 0.73-2.09], respectively), and rating randomized trials as "very useful" (OR, 1.46 [95% CI, 1.12-1.91]) (P < .001) for clinical decision making were positively associated with CAM trial awareness. Acupuncturists, naturopaths, and internists (ORs, 0.15 [95% CI, 0.10-0.23], 0.15 [95% CI, 0.09-0.24], and 0.18 [95% CI, 0.12-0.28], respectively) were all similarly less aware of CAM trial results compared with rheumatologists. CONCLUSION: For clinical research in CAM to achieve its social value, concerted efforts must be undertaken to train clinicians and improve the dissemination of research results.

Patients' views on identifiability of samples and informed consent for genetic research.

It is unclear whether the regulatory distinction between non-identifiable and identifiable information--information used to determine informed consent practices for the use of clinically derived samples for genetic research--is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know about research being done was important to 72% of patients when samples would be anonymous and to 81% of patients when samples would be identifiable. Only 17% wanted to know about the identifiable scenario but not the anonymous scenario (i.e., following the regulatory distinction). Curiosity-based reasons were the most common (37%) among patients who wanted to know about anonymous samples. Of patients wanting to know about either scenario, approximately 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only. Patients were more likely to support permission (versus notification) in the anonymous scenario if they had more education, were Black, less religious, in better health, more private, and less trusting of researchers. The sample, although not representative of the general population, does represent patients at academic medical centers whose clinical samples may be used for genetic research. Few patients expressed preferences consistent with the regulatory distinction between non-identifiable and identifiable information. Data from this study should cause policy-makers to question whether this distinction is useful in relation to research with previously collected clinically derived samples.

Adverse events during hospitalization: results of a patient survey.

BACKGROUND: A two-stage probability sample of patients recently discharged from 16 general acute care hospitals in Massachusetts were interviewed to determine the rates at which patients experience what they considered to be adverse events, to describe the kinds of events they reported, and to identify the correlates of those reports. METHODS: Eligible respondents were adults, 18 years of age or older, who were medical or surgical patients overnight or longer between April 1 and October 1, 2003, and who were discharged to their homes in Massachusetts. Questions covered perceptions of adverse events during hospitalizations and possible correlates of those events. Telephone interviews were carried out an average of nine months after discharge with 2,582 patients (response rate, 53%-60%). RESULTS: Twenty-nine percent of respondents reported at least one unexpected "negative" event during their hospitalization. After physician review, the revised estimate was that 25% perceived that they had experienced at least one event that met our definition for an adverse event. The most common reported events were reactions to newly prescribed drugs (40%) and the effects of surgery (34%). Physician reviewers coded 57% of the adverse events as "significant" and 18% as "serious" or "life-threatening." The physician reviewers also rated 31% of the reported adverse events as likely to be preventable. DISCUSSION: The estimate that one in four hospital patients experienced an adverse event is considerably higher than the published rates based on hospital record review, indicating the potential value of surveys for studies of patient safety. Because of nonresponse among older patients, that estimate is probably an underestimate. Designs that would reduce lags between discharge and interviews and decrease hospital nonresponses would reduce two key threats to confidence in the survey results.

Integration of the biopsychosocial model: perspectives of medical students and residents.

PURPOSE: To examine residents' and medical students' attitudes toward the incorporation of psychosocial factors in diagnosis and treatment and to identify barriers to the integration of evidence-based, mind-body methods. METHOD: A random sample of third- and fourth-year medical students and residents was drawn from the Masterfiles of the American Medical Association. A total of 661 medical students and 550 residents completed a survey, assessing attitudes toward the role of psychosocial factors and the clinical application of behavioral/mind-body methods. RESULTS: The response rate was 40%. Whereas a majority of students and residents seem to recognize the need to address psychosocial factors, 30%-40% believe that addressing such factors leads to minimal or no improvements in outcomes. The majority of students and residents reports that their training in these areas was ineffective, yet relatively few indicate interest in receiving further training. Females are more likely to believe in the need to address psychosocial factors. Additional factors associated with greater openness to addressing psychosocial factors include (1) the perception that training in these areas was helpful, and (2) personal use of behavioral/mind-body methods to care for one's own health. CONCLUSIONS: There is a need for more comprehensive training during medical school and residency regarding both the role of psychosocial factors in health and the application of evidence-based, behavioral/mind-body methods. The current health care structure-particularly insufficient time and inadequate reimbursement for addressing psychosocial factors-may be undermining efforts to improve patient care through inconsistent or nonexistent application of the biopsychosocial model.

Providing high-quality care for limited English proficient patients: the importance of language concordance and interpreter use.

BACKGROUND: Provider-patient language discordance is related to worse quality care for limited English proficient (LEP) patients who speak Spanish. However, little is known about language barriers among LEP Asian-American patients. OBJECTIVE: We examined the effects of language discordance on the degree of health education and the quality of interpersonal care that patients received, and examined its effect on patient satisfaction. We also evaluated how the presence/absence of a clinic interpreter affected these outcomes. DESIGN: Cross-sectional survey, response rate 74%. PARTICIPANTS: A total of 2,746 Chinese and Vietnamese patients receiving care at 11 health centers in 8 cities. MEASUREMENTS: Provider-patient language concordance, health education received, quality of interpersonal care, patient ratings of providers, and the presence/absence of a clinic interpreter. Regression analyses were used to adjust for potential confounding. RESULTS: Patients with language-discordant providers reported receiving less health education (beta = 0.17, p < 0.05) compared to those with language-concordant providers. This effect was mitigated with the use of a clinic interpreter. Patients with language-discordant providers also reported worse interpersonal care (beta = 0.28, p < 0.05), and were more likely to give low ratings to their providers (odds ratio [OR] = 1.61; CI = 0.97-2.67). Using a clinic interpreter did not mitigate these effects and in fact exacerbated disparities in patients' perceptions of their providers. CONCLUSION: Language barriers are associated with less health education, worse interpersonal care, and lower patient satisfaction. Having access to a clinic interpreter can facilitate the transmission of health education. However, in terms of patients' ratings of their providers and the quality of interpersonal care, having an interpreter present does not serve as a substitute for language concordance between patient and provider.

Do characteristics of HIPAA consent forms affect the response rate?

OBJECTIVE: Under the The Health Insurance Portability and Accountability Act Privacy Rule, researchers are required to obtain written authorization from patients to gain access to protected health information. The purpose of this research was to examine how the characteristics of authorization forms used by hospitals affect the likelihood of consent. METHOD: This work reports on a recent telephone survey (administered January to August 2004) of previously hospitalized patients from 16 Massachusetts hospitals. Respondents were asked to provide authorization for review of their medical records. Those respondents who agreed over the phone to be mailed authorization forms were sent a copy of their hospital's form and were asked to sign and return it. Measured characteristics of the forms included number of pages, number of fields, distinctness of institution's name, whether a witness was required, and requirement of Social Security Number (SSN). RESULTS: We received 1021 signed forms (50.3% of all sent forms). The likelihood of return was affected by the requirement of the SSN, the clarity of the hospital name, and providing an extra copy for respondents' records. In logistic regression analysis, besides age and gender, only the SSN and clarity of the hospital name identification were significant. CONCLUSION: Forms should be clear about the institution from which they come, easy to understand, and should not ask for SSN or other highly sensitive information unrelated to health care.

Financial relationships between institutional review board members and industry.

BACKGROUND: Little is known about the nature, extent, and consequences of financial relationships between industry and institutional review board (IRB) members in academic institutions. We surveyed IRB members about such relationships. METHODS: We surveyed a random sample of 893 IRB members at 100 academic institutions (response rate, 67.2%). The questionnaire focused on the financial relationships that the members had with industry (e.g., employment, membership on boards, consulting, receipt of royalties, and paid speaking). RESULTS: We found that 36% of IRB members had had at least one relationship with industry in the past year. Of the respondents, 85.5% said they never thought that the relationships that another IRB member had with industry affected his or her IRB-related decisions in an inappropriate way, 11.9% said they thought this occurred rarely, 2.4% thought it occurred sometimes, and 0.2% thought it occurred often. Seventy-eight respondents (15.1%) reported that at least one protocol came before their IRB during the previous year that was sponsored either by a company with which they had a relationship or by a competitor of that company, both of which could be considered conflicts of interest. Of these 78 members (62 voting members and 16 nonvoting members), 57.7% reported that they always disclosed the relationship to an IRB official, 7.7% said they sometimes did, 11.5% said they rarely did, and 23.1% said they never did. Of the 62 voting members who reported conflicts, 64.5% reported that they never voted on the protocol, 4.8% said they rarely did, 11.3% said they sometimes did, and 19.4% said they always did. Most respondents reported that the views of IRB members who had experience working with industry were beneficial in reviewing industry-sponsored protocols. CONCLUSIONS: Relationships between IRB members and industry are common, and members sometimes participate in decisions about protocols sponsored by companies with which they have a financial relationship. Current regulations and policies should be examined to be sure that there is an appropriate way to handle conflicts of interest stemming from relationships with industry.

Barriers to the integration of psychosocial factors in medicine: results of a national survey of physicians.

PURPOSE: Examine physicians' attitudes toward the incorporation of psychosocial factors in diagnosis and treatment and identify barriers to the integration of evidence-based mind-body methods. METHOD: Random sample of primary care physicians and physicians from selected non-primary specialties was drawn. A total of 1058 physicians completed a 12-page survey. RESULTS: The response rate was 27%. Although a majority of physicians seem to recognize the importance of addressing psychosocial issues, approximately one third believe that addressing such factors would lead to minimal or no improvements in outcomes. A minority reports their training regarding the role of psychosocial factors was effective, and relatively few indicate interest in receiving further training in these areas. Males were less likely to believe in the importance of addressing psychosocial factors. Additional factors included perceptions that training was poor in these areas; feelings of low self-efficacy to address psychosocial issues and the perception that such factors are difficult to control; lack of knowledge of the evidence-base supporting the role of psychosocial factors; and lack of time and inadequate reimbursement to address the psychosocial domain. CONCLUSIONS: These results suggest the need for more comprehensive training in the role of psychosocial factors in health. In addition, the finding that physicians identify lack of time and inadequate reimbursement as significant barriers suggests that the current health care delivery system may, in many respects, be antithetical to the biopsychosocial model.

Reconciling medications at admission: safe practice recommendations and implementation strategies.

BACKGROUND: Fifty hospitals collaborated in a patient safety initiative developed and implemented by the Massachusetts Coalition for the Prevention of Medical Errors and the Massachusetts Hospital Association. METHODS: A consensus group identified safe practices and suggested implementation strategies. Four collaborative learning sessions were offered, and teams monitored their progress and shared successful strategies and lessons learned. Reports from participating teams and an evaluation survey were then used to identify successful techniques for reconciling medications. RESULTS: For the 50 participating hospitals, implementation strategies most strongly correlated with success included active physician and nursing engagement, having an effective improvement team, using small tests of change, having an actively engaged senior administrator, and sending a team to multiple collaborative sessions. DISCUSSION: Adoption of the reconciling safe practices proved challenging. The process of writing medication orders at patient transfer points is complex. The hospitals' experiences demonstrated that implementing the proposed safe practices requires a team effort with leadership support and vigilant measurement.

Data withholding in genetics and the other life sciences: prevalences and predictors.

PURPOSE: To better understand the variety and prevalence of data withholding in genetics and the other life sciences and to explore factors associated with these behaviors. METHOD: In 2000, a sample of 2,893 geneticists and other life scientists (OLS) at the 100 most research-intensive universities in the United States were surveyed concerning data withholding and sharing. The instrument was developed and pretested in 1999. The two primary outcome measures were withholding in verbal exchanges with colleagues about unpublished research (verbal withholding) and withholding as part of the publishing process (publishing withholding). The independent variables related to the personal characteristics, research characteristics of faculty, and previous experience with data withholding. RESULTS: A total of 1,849 faculty responded (64%): 1,240 geneticists and 600 OLS. Forty-four percent of geneticists and 32% of OLS reported participating in any one of 13 forms of data withholding in the three previous years. Publishing withholding (geneticists 35%, OLS 25%) was more frequent than verbal withholding (geneticists 23%, OLS 12%). In multivariate analyses, male gender, participation in relationships with industry, mentors' discouraging data sharing, receipt of formal instruction in data sharing, and negative past experience with sharing were significantly associated with either verbal or publishing withholding among either geneticists or OLS. CONCLUSIONS: Data withholding is common in biomedical science, takes multiple forms, is influenced by a variety of characteristics of investigators and their training, and varies by field of science. Encouraging openness during the formative experiences of young investigators may be critical to increased data sharing, but the effects of formal training do not appear straightforward.

Complementary and alternative medical therapy use among Chinese and Vietnamese Americans: prevalence, associated factors, and effects of patient-clinician communication.

OBJECTIVE: We examined the use of complementary and alternative medical (CAM) therapies among Chinese and Vietnamese Americans who had limited proficiency with the English language and explore the association between patient-clinician discussions about CAM therapy use and patient assessments of quality of care. METHODS: We surveyed Chinese and Vietnamese Americans who visited 11 community health centers in 8 major cities throughout the United States. RESULTS: Of the 4410 patients surveyed, 3258 (74%) returned completed questionnaires. Two thirds of respondents reported they had "ever used" some form of CAM therapy; however, only 7.6% of these patients had discussed their use of CAM therapies with clinicians. Among patients who had used CAM therapies during the week before their most recent visits, clinician-patient discussions about CAM therapy use were associated with better overall patient ratings of quality of care. CONCLUSION: Use of CAM therapies was common among Chinese and Vietnamese Americans who had limited proficiency with the English language. Although discussions about CAM therapy use with clinicians were uncommon, these discussions were associated with better ratings of quality of care.