Beebe, Timothy J.

AbstractIntroductionThe learning health system (LHS) aligns science, informatics, incentives, stakeholders, and culture for continuous improvement and innovation. The Agency for Healthcare Research and Quality and the Patient‐Centered Outcomes Research Institute designed a K12 initiative to grow the number of LHS scientists. We describe approaches developed by 11 funded centers of excellence (COEs) to promote partnerships between scholars and health system leaders and to provide mentored research training.MethodsSince 2018, the COEs have enlisted faculty, secured institutional resources, partnered with health systems, developed and implemented curricula, recruited scholars, and provided mentored training. Program directors for each COE provided descriptive data on program context, scholar characteristics, stakeholder engagement, scholar experiences with health system partnerships, roles following program completion, and key training challenges.ResultsTo date, the 11 COEs have partnered with health systems to train 110 scholars. Nine (82%) programs partner with a Veterans Affairs health system and 9 (82%) partner with safety net providers. Clinically trained scholars (n = 87; 79%) include 70 physicians and 17 scholars in other clinical disciplines. Non‐clinicians (n = 29; 26%) represent diverse fields, dominated by population health sciences. Stakeholder engagement helps scholars understand health system and patient/family needs and priorities, enabling opportunities to conduct embedded research, improve outcomes, and grow skills in translating research methods and findings into practice. Challenges include supporting scholars through roadblocks that threaten to derail projects during their limited program time, ranging from delays in access to data to COVID‐19‐related impediments and shifts in organizational priorities.ConclusionsFour years into this novel training program, there is evidence of scholars' accomplishments, both in traditional academic terms and in terms of moving along career trajectories that hold the potential to lead and accelerate transformational health system change. Future LHS training efforts should focus on sustainability, including organizational support for scholar activities.

Background In clinical trials and clinical practice, patient-reported outcomes are almost always assessed using multiple patient-reported outcome measures at the same time. This raises concerns about whether patient responses are affected by the order in which the patient-reported outcome measures are administered. Methods This questionnaire-based study of order effects included adult cancer patients from five cancer centers. Patients were randomly assigned to complete questionnaires via paper booklets, interactive voice response system, or tablet web survey. Linear Analogue Self-Assessment, Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, and Patient-Reported Outcomes Measurement Information System assessment tools were each used to measure general health, physical function, social function, emotional distress/anxiety, emotional distress/depression, fatigue, sleep, and pain. The order in which the three tools, and domains within tools, were presented to patients was randomized. Rates of missing data, scale scores, and Cronbach’s alpha coefficients were compared by the order in which they were assessed. Analyses included Cochran–Armitage trend tests and mixed models adjusted for performance score, age, sex, cancer type, and curative intent. Results A total of 1830 patients provided baseline patient-reported outcome assessments. There were no significant trends in rates of missing values by whether a scale was assessed earlier or later. The largest order effect for scale scores was due to a large mean score at one assessment time point. The largest difference in Cronbach’s alpha between the versions for the Patient-Reported Outcomes Measurement Information System scales was 0.106. Conclusion The well-being of a cancer patient has many different aspects such as pain, fatigue, depression, and anxiety. These are assessed using a variety of surveys often collected at the same time. This study shows that the order in which the different aspects are collected from the patient is not important.

AbstractThere is increasing interest in health care organizations functioning as learning health systems (LHSs) to improve the quality and efficiency of health care delivery while generating new knowledge. Individuals must be trained in associated concepts and competencies and subsequently positioned (or embedded) within the delivery system for maximum effect as they perform their scholarship. Potential researchers within LHSs come from many different training backgrounds; therefore, each LHS scholar requires a goal‐directed plan tailored to his or her needs. There are few tools available to guide development, training, or evaluation of individuals interested in becoming leaders of research in LHSs. In this paper, we present a newly developed tool for guiding the training of such researchers, the Learning Health Systems Competency Appraisal Inventory (LHS‐CAI). The LHS‐CAI is modeled after the Clinical Research Appraisal Index (CRAI) used within Clinical and Translational Science Award sites across the United States. The LHS‐CAI is a tool for trainees at all levels to use with their mentors in an interactive manner. The tool can then identify areas in which more training is needed and at what level to ensure success as a researcher within LHSs. We further modified the CRAI format to better leverage the LHS‐CAI as a key part of an LHS scholar's individual development plan. To implement the LHS‐CAI, we have identified key points within the Minnesota Learning Health System Mentored Career Development Program (MN‐LHS) at which assessment of expertise for each competency would be useful to LHS scholars, mentors, and program leaders. Scholars in this program come from various clinical and academic backgrounds but are all targeting their career trajectories toward leading embedded LHS research. They will reevaluate their expertise upon completion of the program, with comparison to baseline serving as a key program evaluation tool. The LHS‐CAI is currently being implemented with the first cohort of scholars in the MN‐LHS program.

Background. Despite extensive evaluation processes to determine candidacy for kidney transplantation, variability in graft failure exists. The role of patient socioeconomic status (SES) in transplantation outcomes is poorly understood because of limitations of conventional SES measures. Methods. This population-based retrospective cohort study assessed whether a validated objective and individual-level housing-based SES index (HOUSES) would serve as a predictive tool for graft failure in patients (n = 181) who received a kidney transplant in Olmsted County, MN (January 1, 1998 to December 8, 2016). Associations were assessed between HOUSES (quartiles: Q1 [lowest] to Q4 [highest]) and graft failure until last follow-up date (December 31, 2016) using Cox proportional hazards. The mean age (SD) was 46.1 (17.2) years, 109 (60.2%) were male, 113 (62.4%) received a living kidney donor transplant, and 40 (22.1%) had a graft failure event. Results. Compared with Q1, patients with higher HOUSES (Q2–Q4) had significantly lower graft failure rates (adjusted hazard ratio, 0.47; 95% confidence interval, 0.24-0.92; P < 0.029), controlling for age, sex, race, previous kidney transplantation, and donor type. Conclusions. Although criteria for kidney transplant recipients are selective, patients with higher HOUSES had lower graft failure rates. Thus, HOUSES may enable transplantation programs to identify a target group for improving kidney transplantation outcomes.

Abstract Introduction Although allogeneic hematopoietic cell transplantation (HCT) is an expensive modality of treatment for hematological disorders, very little is known about the financial burden for the patients themselves. We analyzed factors associated with financial burden and its impact on health behaviors of allogeneic HCT recipients. Patients and Methods A questionnaire was mailed to adult patients who were alive after allogeneic HCT performed between 1/06 to 6/12 at Mayo Clinic to collect information regarding financial concerns, household income, employment status, insurance, out-of-pocket expenses and health and functional status. A multivariable logistic regression analysis was performed to determine socio-demographic and clinical factors associated with financial hardship. Results Of 482 patients, 268 responded (response rate 56%). Respondents were more likely to be older and Non-Hispanic Whites. No significant differences were seen in disease or transplant characteristics between the two groups except that respondents were more likely to have received reduced intensity conditioning. Median follow-up after HCT was 2.3 years (range 0.7-6.7 years). All the patients for whom the insurance information was available (missing n=13) were insured. Median physical and mental component score, as derived from the SF-12, were 36.8 [Interquartile range (IQR) 29.3-49.0] and 53.1 (IQR 42.1-57.1) respectively, where the general population score is 50, and lower scores indicate worse functioning. The proportion of patients that reported being on medical disability increased from 8% prior to HCT to 29% after HCT. 73% of the respondents reported that being sick had hurt them financially. 54% experienced adverse financial consequences such as decrease in household income by &gt;50% due to the HCT, need to sell/mortgage home, withdraw money from retirement accounts or having to pay more for medical care than they could afford. 3% declared bankruptcy. 12% had out-of pocket costs for the past 3 months that were&gt; $5000. Median monthly medication copayments were $100 (range $ 0-3000). 36% patients felt that their insurance coverage was poor which was strongly correlated with adverse financial consequences (p=0.0013). Other risk factors for financial burden were poor physical functioning reflected by the physical component score &lt;40 (OR 3.2; p=0.005), lower household income (OR 3.08; p=0.006) and lack of commercial/private insurance (OR 4.2; p&lt;0.001) while adjusting for patient and transplant related characteristics. Time from transplant was a significant predictor (OR 1.2; p=0.03) in the univariate analysis, but lost its significance in the multivariate analysis. 18 to 27% patients reported deleterious health behaviors due to financial constraints such as not taking prescribed medications, not using a recommended medical service or not making physician appointments. Conclusions A significant proportion of allogeneic HCT survivors experience adverse financial consequences with a few reporting severe outcomes like bankruptcy, despite having health insurance coverage. Future research should investigate potential interventions such as early financial counseling and connecting with sources of financial support to help at-risk patients and prevent long-term adverse financial outcomes after this life-saving procedure. Disclosures: No relevant conflicts of interest to declare.

Objective There exists a paucity of work in the development and testing of theoretical models specific to childhood health disparities even though they have been linked to the prevalence of adult health disparities including high rates of chronic disease. We conducted a systematic review and thematic analysis of existing models of health disparities specific to children to inform development of a unified conceptual framework. Methods We systematically reviewed articles reporting theoretical or explanatory models of disparities on a range of outcomes related to child health. We searched Ovid Medline In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid Embase, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus (database inception to 9 July 2015). A metanarrative approach guided the analysis process. Results A total of 48 studies presenting 48 models were included. This systematic review found multiple models but no consensus on one approach. However, we did discover a fair amount of overlap, such that the 48 models reviewed converged into the unified conceptual framework. The majority of models included factors in three domains: individual characteristics and behaviours (88%), healthcare providers and systems (63%), and environment/community (56%), . Only 38% of models included factors in the health and public policies domain. Conclusions A disease-agnostic unified conceptual framework may inform integration of existing knowledge of child health disparities and guide future research. This multilevel framework can focus attention among clinical, basic and social science research on the relationships between policy, social factors, health systems and the physical environment that impact children's health outcomes.

Objective To compare response rate and nonresponse bias across two mixed‐mode survey designs and two single‐mode designs. Data Sources This experiment was embedded in a clinician survey of knowledge and attitudes regarding HPV vaccination ( n = 275). Study Design Clinicians were randomly assigned one of two mixed‐mode (mail/web or web/mail) or single‐mode designs (mail‐only/web‐only). Differences in response rate and nonresponse bias were assessed. Principal Findings Using a multiple‐contact protocol increased response, and sending a web survey first provided the more rapid response. Overall, the mixed‐mode survey designs generated final response rates approximately 10 percentage points higher than their single‐mode counterparts, although only the final response differences between the mail‐only and web/mail conditions attained statistical significance (32.1 percent vs. 48 percent, respectively; p = .005). Observed differences did not result in nonresponse bias. Conclusions Results support mixing modes of survey administration and web‐based data collection in a multiple contact survey data collection protocol.

Background: Although the Affordable Care Act has been successful in expanding Medicaid to >17 million people, insurance alone may not translate into access to health care. Even among the insured, substantial barriers to accessing services inhibit health care utilization. Objectives: We examined the effect of selected barriers to health care access and the magnitude of those barriers on health care utilization. Research Design: Data come from a 2008 survey of adult enrollees in Minnesota’s public health care programs. We used multivariate logistic regression to estimate the effects of perceived patient, provider, and system-level barriers on past year delayed, foregone, and lack of preventive care. Subjects: A total of 2194 adults enrolled in Minnesota Health Care Programs who were mostly female (66%), high school graduates (76%), unemployed (62%), and living in metro areas (67%) were included in the analysis. Results: Reporting problems across all barriers increased the odds of delayed care from 2 times for provider-related barriers (OR=2.0; 95% CI, 1.2–3.3) to >6 times for access barriers (OR=6.2; 95% CI, 3.8–10.2) and foregone care from 2.6 times for family/work barriers (OR=2.6; 95% CI, 1.3–5.1) to >7 times for access barriers (OR=7.1; 95% CI, 3.9–13.1). Perceived discrimination was the only barrier consistently associated with all 3 utilization outcomes. Conclusions: Multiple types of barriers are associated with delayed and foregone care. System-level barriers and discrimination have the greatest effect on health care seeking behavior.