What motivates minorities to participate in research?

This study investigates factors that facilitate and impede minority participation in medical and scientific research studies. Four focus group sessions involving 18 participants aged 18 to 55 years were conducted. Participants, all members of minority groups, were asked a series of questions about why minorities in the Twin Cities area might or might not participate in medical research. Focus group participants indicated they would be willing to participate as research subjects if study findings were shored with them and their primary care physician and if results would benefit their community. Participants cited 4 major barriers to their participation in research: limited knowledge of health studies, mistrust of researchers, limited community involvement in the design of health studies, and use of invasive procedures. Results from this study suggest that researchers seeking to include minority subjects need to use more participatory or community-centered approaches to research.     

Can we use biomarkers in combination with self-reports to strengthen the analysis of nutritional epidemiologic studies?

Background

In epidemiologic studies, cancer stage is an important predictor of outcomes. However, cancer stage is typically unavailable in medical insurance claims datasets, thus limiting the usefulness of such data for epidemiologic studies. Therefore, we sought to develop an algorithm to predict cancer stage based on covariates available from claims-based data.

Methods

We identified a cohort of 77,306 women age ≥ 66 years with stage I-IV breast cancer, using the Surveillence Epidemiology and End Results (SEER)-Medicare database. We formulated an algorithm to predict cancer stage using covariates (demographic, tumor, and treatment characteristics) obtained from claims. Logistic regression models derived prediction equations in a training set, and equations' test characteristics (sensitivity, specificity, positive predictive value (PPV), and negative predictive value [NPV]) were calculated in a validation set.

Results

Of the entire sample of women diagnosed with invasive breast cancer, 51% had stage I; 26% stage II; 11% stage III; and 4% stage IV disease. The equation predicting stage IV disease achieved sensitivity of 81%, specificity 89%, positive predictive value (PPV) 24%, and negative predictive value (NPV) 99%, while the equation distinguishing stage I/II from stage III disease achieved sensitivity 83%, specificity 78%, PPV 98%, and NPV 31%. Combined, the equations most accurately identified early stage disease and ascertained a sample in which 98% of patients were stage I or II.

Conclusions

A claims-based algorithm was utilized to predict breast cancer stage, and was particularly successful when used to identify early stage disease. These prediction equations may be applied in future studies of breast cancer patients, substantially improving the utility of claims-based studies in this group. This method may similarly be employed to develop algorithms permitting claims-based epidemiologic studies of patients with other cancers.     

Can we trust population surveys to count Medicaid enrollees and the uninsured?

Health foundations, such as the Robert Wood Johnson Foundation (RWJF), make multimillion-dollar investments in programs to expand insurance coverage. These efforts are driven largely by estimates of the number of uninsured people derived from population surveys, which might overestimate the number of uninsured people if they under-count people enrolled in Medicaid. This paper reports the results of the RWJF-funded California Medicaid Undercount Experiment (CMUE) to estimate the extent of underreporting of Medicaid in the California Health Interview Survey (CHIS) and its effect on estimates of uninsurance. Although some over- and underreporting occurs, overall CHIS Medicaid estimates match administrative counts for adults.     

Do patients have an obligation to participate in student teaching?

Context  Patients may participate in teaching in many ways, in different settings and with different degrees of expert supervision. The majority of patients are generally very willing to participate in teaching. At times, however, patients may decline to see students because they are too sick, wish to maintain their privacy, prefer to have more expert care, or simply wish to have no involvement with students. This raises the question as to whether patients have any obligation to participate in education.
Methods  A number of arguments are advanced to justify the claim that patients have an obligation to participate in student teaching. These include: that patients should participate in training for the benefit of others if they wish to benefit from the care of those who have learnt from others; that, without patient participation in teaching, the entire health system would collapse; that participation in education provides a benefit over and above the provision of individual care; that, as we all benefit from the presence of a functioning health system, we should all be prepared to contribute to it, and that patients should 'pay' for free public health care by participating in teaching.
Conclusions  None of the arguments that patients have an obligation to participate in medical education are convincing. We believe that patients participate in training largely out of altruism rather than obligation. Where possible, sick patients should be substituted for by healthy patients or simulations.     

Bundles: an opportunity to align incentives for continuing care in Canada?

Over the past three decades, diagnosis related groups (DRG) have revolutionized hospital funding by successfully focusing hospitals attention on the 'production' process. However, using DRG for funding acute hospitals does little to create incentives outside of the hospital, or coordinate health care across providers and settings. With many health care quality and efficiency issues stemming from failures at the 'seams' in the system, there is increasing interest in creating new 'bundles' of care which includes acute and post-acute care services that align economic incentives for care coordination. Analysis of Ontario (Canada) datasets demonstrates that linking existing sources of clinical, administrative and cost data to create 'bundles' is technically feasible. However, key implementation challenges need to be addressed, such as administrative and contractual arrangements across multiple provider organizations, pricing and relations with physicians. Nonetheless, this analysis of Ontario data demonstrates that bundles provide an alternative policy option to DRG's in Canada's move toward activity-based funding.     

Can self-reported dieting and dietary restraint identify underreporters of energy intake in dietary surveys?

Underreporting is endemic in most dietary studies and ways to reliably identify individuals who may underreport energy intake are needed. Whether questions on self-reported dieting and dietary restraint, in addition to weight status, would identify individuals who may underreport energy intakes was examined in a United Kingdom representative survey. Mean daily energy intake was calculated from the 7-day dietary record of 668 men and 826 women. Reported physical activity was used to assign each subject's activity level and to calculate estimated energy requirements from published equations. Underreporting was calculated as estimated energy requirements minus energy intake with adjustment for daily variation. The Dutch Eating Behavior Questionnaire assessed dietary restraint. Underreporting was higher in men and women reporting current dieting than nondieters (P<0.001) and higher in high-restrained (P<0.001) than low-restrained. When stratified by body mass index category, in men these associations were only significant in the overweight (P<0.001). Dieting was associated with greater underreporting in both lean (P<0.01) and overweight women (P<0.001). Underreporting was higher in lean high-restrained women than low-restrained (P=0.02), but similar in overweight women regardless of restraint score. Questions to assess dietary restraint and current dieting may be useful tools to identify and evaluate underreporting at an individual level in dietary surveys.     

Managed competition in the Netherlands: Do insurers have incentives to steer on quality?

In health care systems based on managed competition, insurers are expected to negotiate with providers about price, quantity, and quality of care. The Dutch experience shows that this expectation may be justified with regard to price and quantity, but for quality the results are less conclusive. To examine the incentives insurers face for enhancing quality of care, we conducted in-depth interviews with CEOs and organised separate focus groups with purchasers and marketers of five Dutch health insurers. Jointly these insurers account for more than 90 percent of the market. We distinguished three categories of both positive and negative incentives to steer on quality: social, competitive and financial incentives. The overall picture emerging is that insurers are caught in a struggle between positive and negative incentives, with CEOs being more positive about the incentives to steer on quality than purchasers and marketers. At present, the social mission perceived by insurers seems to be their most important driver to invest in quality enhancement. However, whether or not the role of the social mission is sustainable in a competitive market remains unclear. Improving publicly available information on quality therefore seems to be crucially important for reinforcing the positive as well as counteracting the negative incentives insurers face with respect to enhancing quality of care.     

Understanding motivations to participate in an observational research study: Why do patients enroll?

By understanding common motivations for participating in observational research studies, clinicians may better understand the perceived benefits of research participation from their clients’ perspective. We enrolled 164 cardiac patients in a study about the effects of gratitude and optimism. Two weeks post-enrollment, participants completed a four-item questionnaire regarding motivations for study enrollment. Altruistic motivation ranked highest, while intellectual, health-related, and financial motivations rated lower. Four subgroups of participants emerged, each with distinct characteristics and different priorities for participating. These findings may help front-line clinicians to understand which motivations for participation apply to their clients who enroll in non-treatment-based research projects.     

Can accurate data on birthweight be obtained from health interview surveys?

BACKGROUND: Because hospital records rarely exist for a representative sample of the population in developing countries, researchers frequently rely on birthweight data from surveys. Yet, the quality of these data has rarely been evaluated. This study explores the accuracy of birthweight information in six demographic and health surveys in Latin America conducted in the early 1990s: two in Guatemala, and one each in Bolivia, Costa Rica, El Salvador and Peru. METHODS: The quality of the birthweight reports is assessed by examining the plausibility of estimates of the proportion of newborns reported to have been weighed and estimates derived from the numerical weights, by characteristics of the delivery and maternal education. RESULTS: The estimates suggest that a substantial proportion of women whose newborns were probably never weighed report a birthweight. For all of the surveys, with the possible exception of Costa Rica, the average birthweights appear to be too high, and the estimates of the prevalence of low birthweight too low. In addition, the data reveal anomalous patterns, such as higher birthweights for home as compared with hospital deliveries. CONCLUSIONS: These findings suggest that estimates of low birthweight derived from surveys in developing countries are likely to portray an overly optimistic picture of children's and women's health status. More information about the underlying source of these data are needed not only to provide additional insight into the degree of error characterizing existing estimates, but also to improve data collection strategies in future health interview surveys.     

Does questionnaire structure influence response in postal surveys?

This study tested the effect of questionnaire structure on response, speed of return, and content of answers in a postal survey. All 259 patients aged 30-59 years who consulted with back pain at four UK general practices from March to June 2001 were randomly allocated to receive either a traditionally or chronologically structured self-completion questionnaire. The response was higher and the returns quicker (P =.05) for the chronologic questionnaire. There were no statistically significant differences in completion rates or scores on the SF-36, Chronic Pain Grade, Hospital Anxiety and Depression Scale, or Roland-Morris Disability Questionnaire between the two types of questionnaire, and test-retest reliability was high for all scales. Changing questionnaire structure to make questions chronologic does not substantially affect the answers given, but may make a questionnaire more acceptable and easier to complete and speed up returns.     

Are young injection drug users ready and willing to participate in preventive HCV vaccine trials?

Trials to evaluate the efficacy of preventive HCV vaccines will need participation from high risk HCV seronegative injection drug users (IDUs). To guide trial planning, we assessed willingness of young IDU in San Francisco to participate in HCV vaccine efficacy trials and evaluate knowledge of vaccine trial concepts: placebo, randomization and blinding. During 2006 and 2007, a total of 67 participants completed the survey. A substantial proportion (88%) would definitely (44%) or probably (44%) be willing to participate in a randomized trial, but knowledge of vaccine trial concepts was low. Reported willingness to participate in an HCV vaccine trial decreased with increasing trial duration, with 67% of participants surveyed willing to participate in a trial of 1 year duration compared to 43% of participants willing to participate in a trial of 4 years duration. Willingness to enroll in HCV vaccine trials was higher in young IDU than reported by most at-risk populations in HIV vaccine trials. Educational strategies will be needed to ensure understanding of key concepts prior to implementing HCV vaccine trials.     

Will donations to their learned college increase surgeons' participation in surveys? A randomized trial

Effective strategies to maximize response rates to self-administered surveys of clinicians are crucial to minimize response bias. Offers of charitable donations have been assessed for their potential to promote participation of community samples but not in the context of medical specialist samples. We randomized all Australian colorectal surgeons (n = 219) to whom we mailed a survey about clinical practice guidelines to receive either a standard covering letter or one promising a donation to their peak professional organization upon our receipt of their completed survey. Contrary to expectations, surgeons advised that their participation would secure a donation to their college were significantly less likely to return their questionnaire (84.3%, 95% CI 76.0-90.5%) than those receiving a standard letter (93.7%, 95% CI 87.4-97.4%). They also were more tardy in their response (Hazard Ratio = 0.75, 95% CI 0.57-1.00) (P = 0.047). In this context, offering donations to surgeons was counterproductive in enhancing response rates.