Democratizing health system data to impact social and environmental health contexts: a novel collaborative community data-sharing model.

BACKGROUND: Community health data are infrequently viewed in the context of social and environmental health determinants. We developed a novel data-sharing model to democratize health system data and to facilitate community and population health improvement. METHODS: Durham County, the City of Durham in North Carolina, Durham health systems and other stakeholders have developed a data-sharing model to inform local community health efforts. Aggregated health system data obtained through clinical encounters are shared publicly, providing data on the prevalence of health conditions of interest to the community. RESULTS: A community-owned web platform called the Durham Neighborhood Compass provides aggregate health data (e.g. on diabetes, heart disease, stroke and other conditions of interest) in the context of neighborhood social (e.g. income distribution, education level, demographics) and environmental (e.g. housing prices, crime rates, travel routes, school quality, grocery store proximity) contexts. Health data are aggregated annually to help community stakeholders track changes in health and health contexts over time. CONCLUSIONS: The Durham Neighborhood Compass is among the first collaborative public efforts to democratize health system data in the context of social and environmental health determinants. This model could be adapted elsewhere to support local community and population health improvement initiatives.

Development of a Telehealth Intervention to Improve Access to Live Donor Kidney Transplantation.

BACKGROUND: Live donor kidney transplantation (LDKT) is underutilized by patients with end-stage kidney disease due to knowledge, communication, and logistical barriers. MATERIAL AND METHODS: The Talking About Live Kidney Donation Social Worker Intervention (TALK-SWI) is a previously validated intervention demonstrated to improve patients' access to and pursuit of LDKT through in-person delivery of education and social support. To help overcome logistical barriers to LDKT, we adapted TALK-SWI into a telehealth intervention employing digital (ie, tablet, smartphone) and telephone technologies. We studied the usability and acceptability of both the mobile device and telephone counseling portions of the intervention among people with kidney disease. For the digital portion, we assessed critical (ie, inability to complete a task) and non-critical (ie, ability to complete a task utilizing an alternative method) errors participants encountered when using the program and their preferences regarding digital materials. Simultaneously, we assessed participants' satisfaction with telephone-adapted counseling compared to the original, in-person counseling. RESULTS: The 15 participants testing the digital technology made 25 critical errors and 29 non-critical errors, while they easily completed 156 tasks (out of 210). A majority of participants (73%) preferred the tablet/smart phone education application over traditional materials, and most (80%) indicated they would be more likely to utilize the mobile platform over traditional materials. Participants testing the telephone-adapted (n = 45) and in-person (n = 125) social worker counseling all reported high satisfaction with the intervention. CONCLUSION: We successfully adapted a validated educational and behavioral intervention to improve access to LDKT into a usable and acceptable telehealth intervention.

Access and outcomes among minority transplant patients, 1999-2008, with a focus on determinants of kidney graft survival.

Coincident with an increasing national interest in equitable health care, a number of studies have described disparities in access to solid organ transplantation for minority patients. In contrast, relatively little is known about differences in posttransplant outcomes between patients of specific racial and ethnic populations. In this paper, we review trends in access to solid organ transplantation and posttransplant outcomes by organ type, race and ethnicity. In addition, we present an analysis of categories of factors that contribute to the racial/ethnic variation seen in kidney transplant outcomes. Disparities in minority access to transplantation among wait-listed candidates are improving, but persist for those awaiting kidney, simultaneous kidney and pancreas and intestine transplantation. In general, graft and patient survival among recipients of solid organ transplants is highest for Asians and Hispanic/Latinos, intermediate for whites and lowest for African Americans. Although much of the difference in outcomes between racial/ethnic groups can be accounted for by adjusting for patient characteristics, important observed differences remain. Age and duration of pretransplant dialysis exposure emerge as the most important determinants of survival in an investigation of the relative impact of center-related versus patient-related variables on kidney graft outcomes.

Impact of Medicare coverage on disparities in access to simultaneous pancreas and kidney transplantation.

In the setting of disparities in access to simultaneous pancreas and kidney transplantation (SPKT), Medicare coverage for this procedure was initiated July 1999. The impact of this change has not yet been studied. A national cohort of 22 190 type 1 diabetic candidates aged 18-55 for kidney transplantation (KT) alone or SPKT was analyzed. Before Medicare coverage, 57% of Caucasian, 36% of African American and 38% of Hispanic type 1 diabetics were registered for SPKT versus KT alone. After Medicare coverage, these proportions increased to 68%, 45% and 43%, respectively. The overall increase in SPKT registration rate was 27% (95% CI 1.16-1.38). As expected, the increase was more substantial in patients with Medicare primary insurance than those with private insurance (Relative Rate 1.18, 95% CI 1.09-1.28). However, racial disparities were unaffected by this policy change (African American vs. Caucasian: 0.97, 95% CI 0.87-1.09; Hispanic vs. Caucasian: 0.94, 95% CI 0.78-1.05). Even after Medicare coverage, African Americans and Hispanics had almost 30% lower SPKT registration rates than their Caucasian counterparts (95% CI 0.66-0.79 and 0.59-0.80, respectively). Medicare coverage for SPKT succeeded in increasing access for patients with Medicare, but did not affect the substantial racial disparities in access to this procedure.

The association of state and national legislation with living kidney donation rates in the United States: a national study.

The effect of state legislation and federal policies supporting living donors on living kidney donation rates in the United States is unknown. We studied living kidney donation rates from 1988 to 2006, and we assessed changes in donation before and after the enactment of state legislation and the launch of federal initiatives supporting donors. During the study, 27 states enacted legislation. Among states enacting legislation, there was no statistically significant difference in the average rate of increase in overall living kidney donations after compared to before state legislation enactment (annual increase in donations per 1 000 000 population [95% confidence interval] 2.39 [1.94-2.84] compared to 1.68 [0.89-2.47] respectively, p > 0.05). Among states not enacting legislation, there was a statistically significantly greater annual increase in overall donation rates from 1997 to 2002 compared to before 1997 when federal initiatives commenced, but there was no growth in annual rates after 2002. State and federal legislation were associated with increases in living-unrelated donation. These findings suggest that although existing public policies were not associated with improvements in the majority of donations from living-related donors, they may have had a selective effect on barriers to living-unrelated kidney donation.

Perceived transparency and fairness of the organ allocation system and willingness to donate organs: a national study.

The influence of perceptions of organ allocation on willingness to donate organs is unclear. We performed a national study assessing the relation of public perceptions of organ allocation to willingness to donate organs, and we assessed the contribution of beliefs regarding discrimination in health care to observed associations. Among 845 participants, a majority (65%) reported that they less than "mostly" understand allocation, and most (71%) reported that they believe allocation is "unfair" or are "unsure" of its fairness. Participants reporting less understanding were less willing to donate (56%) than persons reporting greater understanding (67%) (p < 0.01). Participants believing allocation is "unfair" or who are "unsure" about fairness were less willing to donate (54%) than persons believing allocation is "fair" (68%) (p < 0.01). Associations were stronger among certain demographic subgroups. Participants with the least favorable perceptions of allocation were more likely than their counterparts to believe that race and income discrimination occur in transplantation and to believe that they personally experienced income discrimination in health care. Adjustment for these beliefs partially attenuated associations between perceptions regarding allocation and willingness to donate. Interventions enhancing transparency and perceived fairness of organ allocation may improve willingness to donate, particularly if they address concerns regarding discrimination in transplantation and health care.

Public attitudes toward incentives for organ donation: a national study of different racial/ethnic and income groups.

Attitudes toward monetary and nonmonetary incentives for living (LD) and deceased donation (DD) among the U.S. general public and different racial/ethnic and income groups have not been systematically studied. We studied attitudes via a telephone questionnaire administered to persons aged 18-75 in the continental United States. Among 845 participants (85% of randomized households), less than one-fifth participants were in favor of incentives for DD (range 7-17%). Most persons were in favor of reimbursement of medical costs (91%), paid leave (84%) and priority on the waiting list (59%) for LD. African Americans and Hispanics were more likely than Whites to be in favor of some incentives for DD. African Americans were more likely than Whites to be in favor of monetary incentives for LD. Whites with incomes less than $20 000 were more likely than Whites with greater incomes to be in favor of reimbursement for deceased donors' funeral expenses or medical expenses. The U.S. public is not generally supportive of incentives for DD, but is supportive of limited incentives for LD. Racial/ethnic minorities are more supportive than Whites of some incentives. Persons with low income may be more accepting of certain monetary incentives.

The contribution of sociodemographic, medical, and attitudinal factors to blood donation among the general public.

BACKGROUND: Few studies have simultaneously assessed the relative importance of sociodemographic, medical, and attitudinal factors in explaining which individuals are more likely to donate blood. STUDY DESIGN AND METHODS: A cross-sectional telephone survey of households in Maryland was conducted to identify the relation of sociodemographic, medical, and attitudinal factors to blood donation history among the general public. Random digit dialing was used to identify households; individuals aged 18 to 75 years were randomly selected within households. In multivariate analyses, the independent relationship of these factors with prior history of blood donation was assessed, and the amount of variation in prior history of blood donation among the study population that could be explained by these factors was determined. RESULTS: Of 385 participants (84% of randomized homes), 228 (59%) had donated blood at least once in the past. After adjusting for potential confounders, women, black participants, and those agreeing with the statement "I am afraid of hospitals" had 60 to 80 percent lower odds of prior donation when compared with men, white participants, and those who did not agree with the statement (OR [95% CI]: 0.2 [0.1-0.4], 0.4 [0.2-0.8], and 0.3 [0.2-0.6], respectively). The effect of fear of hospitals was consistent across sex and race. Trust, fear, and suspicion of hospitals were among factors contributing most to variation in prior donation history. CONCLUSION: Female sex, black race, and fear of hospitals are three major factors negatively associated with prior history of blood donation. Fear of hospitals affects blood donation patterns across race and sex groups. Future study is needed to determine whether recruitment of blood donors may be more efficient if focused toward women, minorities, and donors' fears of healthcare facilities or hospitals.

An evidence-based review of patient-centered behavioral interventions for hypertension.

INTRODUCTION: While behavioral interventions may be viewed as important strategies to improve blood pressure (BP), an evidence-based review of studies evaluating these interventions may help to guide clinical practice. METHODS: We employed systematic review and meta-analysis of the literature (1970-1999) to assess the independent and additive effects of three behavioral interventions on BP control (counseling, self-monitoring of BP, and structured training courses). RESULTS: Of 232 articles assessing behavioral interventions, 15 (4072 subjects) evaluated the effectiveness of patient-centered counseling, patient self-monitoring of BP, and structured training courses. Pooled results revealed that counseling was favored over usual care (3.2 mmHg [95% CI, 1.2-5.3] improvement in diastolic blood pressure [DBP] and 11.1 mmHg [95% CI, 4.1-18.1] improvement in systolic blood pressure [SBP]) and training courses (10 mmHg improvement in DBP [95% CI, 4.8-15.6]). Counseling plus training was favored over counseling (4.7 mmHg improvement in SBP [95% CI, 1.2-8.2]) and afforded more subjects hypertension control (95% [95% CI, 87-99]) than those receiving counseling (51% [95% CI, 34-66]) or training alone (64% [95% CI, 48-77]). CONCLUSIONS: Evidence suggests that counseling offers BP improvement over usual care, and that adding structured training courses to counseling may further improve BP. However, there is not enough evidence to conclude whether self-monitoring of BP or training courses alone offer consistent improvement in BP over counseling or usual care. The magnitude of BP reduction offered by counseling indicates this may be an important adjunct to pharmacologic therapy.

A computerized tool for evaluating the effectiveness of preventive interventions.

In identifying appropriate strategies for effective use of preventive services for particular settings or populations, public health practitioners employ a systematic approach to evaluating the literature. Behavioral intervention studies that focus on prevention, however, pose special challenges for these traditional methods. Tools for synthesizing evidence on preventive interventions can improve public health practice. The authors developed a literature abstraction tool and a classification for preventive interventions. They incorporated the tool into a PC-based relational database and user-friendly evidence reporting system, then tested the system by reviewing behavioral interventions for hypertension management. They performed a structured literature search and reviewed 100 studies on behavioral interventions for hypertension management. They abstracted information using the abstraction tool and classified important elements of interventions for comparison across studies. The authors found that many studies in their pilot project did not report sufficient information to allow for complete evaluation, comparison across studies, or replication of the intervention. They propose that studies reporting on preventive interventions should (a) categorize interventions into discrete components; (b) report sufficient participant information; and (c) report characteristics such as intervention leaders, timing, and setting so that public health professionals can compare and select the most appropriate interventions.