The acceptance of evolution: A developmental view of Generation X in the United States.

The public acceptance of evolution remains a contentious issue in the United States. Numerous investigations have used national cross-sectional studies to examine the factors associated with the acceptance or rejection of evolution. This analysis uses a 33-year longitudinal study that followed the same 5000 public-school students from grade 7 through midlife (ages 45-48) and is the first to do so in regard to evolution. A set of structural equation models demonstrate the complexity and changing nature of influences over these three decades. Parents and local influences are strong during the high school years. The combination of post-secondary education and occupational and family choices demonstrate that the 15 years after high school are the switchyards of life.

Advancing maturity modeling for precision oncology.

Introduction: This study aimed to map the maturity of precision oncology as an example of a Learning Health System by understanding the current state of practice, tools and informatics, and barriers and facilitators of maturity. Methods: We conducted semi-structured interviews with 34 professionals (e.g., clinicians, pathologists, and program managers) involved in Molecular Tumor Boards (MTBs). Interviewees were recruited through outreach at 3 large academic medical centers (AMCs) (n = 16) and a Next Generation Sequencing (NGS) company (n = 18). Interviewees were asked about their roles and relationships with MTBs, processes and tools used, and institutional practices. The interviews were then coded and analyzed to understand the variation in maturity across the evolving field of precision oncology. Results: The findings provide insight into the present level of maturity in the precision oncology field, including the state of tooling and informatics within the same domain, the effects of the critical environment on overall maturity, and prospective approaches to enhance maturity of the field. We found that maturity is relatively low, but continuing to evolve, across these dimensions due to the resource-intensive and complex sociotechnical infrastructure required to advance maturity of the field and to fully close learning loops. Conclusion: Our findings advance the field by defining and contextualizing the current state of maturity and potential future strategies for advancing precision oncology, providing a framework to examine how learning health systems mature, and furthering the development of maturity models with new evidence.

Public attitude toward Covid-19 vaccination: The influence of education, partisanship, biological literacy, and coronavirus understanding.

The Covid-19 pandemic posed new issues about vaccination and contagious diseases that had not been the focus of public policy debate in the United States since the tuberculosis pandemic of the late 19th century and the early 20th century. Using a national address-based probability sample of American adults in 2020 and a structural equation model, this analysis seeks to understand the role of education, age, gender, race, education, partisanship, religious fundamentalism, biological literacy, and understanding of the coronavirus to predict individual intention concerning taking the Covid-19 vaccine. Given the substantial changes in the United States since the tuberculosis pandemic, it is important to understand the factors that drive acceptance and hesitancy about Covid-19 vaccination. We find that education, biological literacy, and understanding of the coronavirus were strong positive predictors of willingness to be vaccinated and religious fundamentalism and conservative partisanship were strong negative predictors of intent to vaccinate. These results should be encouraging to the scientific community.

Public acceptance of evolution in the United States, 1985-2020.

The public acceptance of evolution in the United States is a long-standing problem. Using data from a series of national surveys collected over the last 35 years, we find that the level of public acceptance of evolution has increased in the last decade after at least two decades in which the public was nearly evenly divided on the issue. A structural equation model indicates that increasing enrollment in baccalaureate-level programs, exposure to college-level science courses, a declining level of religious fundamentalism, and a rising level of civic scientific literacy are responsible for the increased level of public acceptance.

Willingness to Participate in Health Information Networks with Diverse Data Use: Evaluating Public Perspectives.

INTRODUCTION: Health information generated by health care encounters, research enterprises, and public health is increasingly interoperable and shareable across uses and users. This paper examines the US public's willingness to be a part of multi-user health information networks and identifies factors associated with that willingness. METHODS: Using a probability-based sample (n = 890), we examined the univariable and multivariable relationships between willingness to participate in health information networks and demographic factors, trust, altruism, beliefs about the public's ethical obligation to participate in research, privacy, medical deception, and policy and governance using linear regression modeling. RESULTS: Willingness to be a part of a multi-user network that includes health care providers, mental health, social services, research, or quality improvement is low (26 percent-7.4 percent, depending on the user). Using stepwise regression, we identified a model that explained 42.6 percent of the variability in willingness to participate and included nine statistically significant factors associated with the outcome: Trust in the health system, confidence in policy, the belief that people have an obligation to participate in research, the belief that health researchers are accountable for conducting ethical research, the desire to give permission, education, concerns about insurance, privacy, and preference for notification. DISCUSSION: Our results suggest willingness to be a part of multi-user data networks is low, but that attention to governance may increase willingness. Building trust to enable acceptance of multi-use data networks will require a commitment to aligning data access practices with the expectations of the people whose data is being used.

Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation.

BACKGROUND: Patient-centered care has been shown to improve patient outcomes, satisfaction, and engagement. However, there is a paucity of research on patient-centered care in the inpatient setting, including an understanding of unmet informational needs that may be limiting patient engagement. Pediatric hematopoietic stem cell transplantation (HSCT) represents an ideal patient population for elucidating unmet informational needs, due to the procedure's complexity and its requirement for caregiver involvement. METHODS: We conducted field observations and semi-structured interviews of pediatric HSCT caregivers and patients to identify informational challenges in the inpatient hospital setting. Data were analyzed using a thematic grounded theory approach. RESULTS: Three stages of the caregiving experience that could potentially be supported by a health information technology system, with the goal of enhancing patient/caregiver engagement, were identified: (1) navigating the health system and learning to communicate effectively with the healthcare team, (2) managing daily challenges of caregiving, and (3) transitioning from inpatient care to long-term outpatient management. DISCUSSION: We provide four practical recommendations to meet the informational needs of pediatric HSCT patients and caregivers: (1) provide patients/caregivers with real-time access to electronic health record data, (2) provide information about the clinical trials in which the patient is enrolled, (3) provide information about the patient's care team, and (4) properly prepare patients and caregivers for hospital discharge. CONCLUSION: Pediatric HSCT caregivers and patients have multiple informational needs that could be met with a health information technology system that integrates data from several sources, including electronic health records. Meeting these needs could reduce patients' and caregivers' anxiety surrounding the care process; reduce information asymmetry between caregivers/patients and providers; empower patients/caregivers to participate in the care process; and, ultimately, increase patient/caregiver engagement in the care process.

A Novel Health Information Technology Communication System to Increase Caregiver Activation in the Context of Hospital-Based Pediatric Hematopoietic Cell Transplantation: A Pilot Study.

BACKGROUND: Pediatric hematopoietic cell transplantation (HCT), commonly referred to as blood and marrow transplantation (BMT), is an intense treatment modality that requires the involvement of engaged caregivers during the patient's (child's) prolonged hospitalization. The ubiquity of electronic health records (EHRs) and a trend toward patient-centered care could allow a novel health information technology (IT) system to increase parental engagement. The paucity of research on acute care, hospital-based (inpatient) health IT applications for patients or caregivers provides an opportunity for testing the feasibility of such applications. The pediatric BMT population represents an ideal patient group to conduct an evaluation due to the lengthy inpatient stays and a heightened need for patient activation. OBJECTIVE: The primary objective of this study is to assess the feasibility of implementing the BMT Roadmap in caregivers as an intervention during their child's inpatient hospitalization. The BMT Roadmap is an inpatient portal prototype optimized for tablet with a user-centered design. It integrates patient-specific laboratory and medication data from the EHR in real-time and provides support in terms of discharge goals, home care education, and other components. Feasibility will be proven if (1) the BMT Roadmap functions and can be managed by the study team without unexpected effort, (2) the system is accessed by users at a defined minimum threshold, and (3) the qualitative and quantitative research conducted provides quality data that address the perceived usefulness of the BMT Roadmap and could inform a study in a larger sample size. METHODS: This will be a single-arm, nonrandomized feasibility study. We aim to enroll 10 adult caregivers (age ≥ 18 years) of pediatric patients (aged 0-25 years) undergoing autologous (self-donor) or allogeneic (alternative donor) BMT. Assenting minors (aged 10-18) will also be invited to participate. Recruitment of study participants will take place in the outpatient pediatric BMT clinic. After signing an informed consent, the research study team will provide participants with the BMT Roadmap, available on an Apple iPad, which will used throughout the inpatient hospitalization. To measure the study outcomes, approximately 6-8 semistructured qualitative interviews will be conducted periodically from pre-BMT to 100 days post-BMT and an additional 15-20 semistructured interviews will be conducted among BMT health care providers to assess perceived usefulness and usability of the system, as well as any associated workflow impacts. Quantitative survey instruments will only be administered to adult participants (age ≥ 18 years). RESULTS: Recruitment will begin in September 2015, and preliminary findings are expected in 2016. CONCLUSIONS: This protocol offers a framework for the design and analysis of a personalized health IT system that has the potential to increase patient and caregiver engagement in acute care, hospital-based contexts.

Collaborative Help in Chronic Disease Management: Supporting Individualized Problems.

Coping with chronic illness disease is a long and lonely journey, because the burden of managing the illness on a daily basis is placed upon the patients themselves. In this paper, we present our findings for how diabetes patient support groups help one another find individualized strategies for managing diabetes. Through field observations of face-to-face diabetes support groups, content analysis of an online diabetes community, and interviews, we found several help interactions that are critical in helping patients in finding individualized solutions. Those are: (1) patients operationalize their experiences to easily contextualize and share executable strategies; (2) operationalization has to be done within the larger context of sharing illness trajectories; and (3) the support groups develop common understanding towards diabetes management. We further discuss how our findings translate into design implications for supporting chronic illness patients in online community settings.

Brainstorming Design for Health: Helping Patients Utilize Patient-Generated Information on the Web.

Researchers and practitioners show increasing sinterest in utilizing patient-generated information on the Web. Although the HCI and CSCW communities have provided many exciting opportunities for exploring new ideas and building broad agenda in health, few venues offer a platform for interdisciplinary and collaborative brainstorming about design challenges and opportunities in this space. The goal of this workshop is to provide participants with opportunities to interact with stakeholders from diverse backgrounds and practices-researchers, practitioners, designers, programmers, and ethnographers-and together generate tangible design outcomes that utilize patient-generated information on the Web. Through small multidisciplinary group work, we will provide participants with new collaboration opportunities, understanding of the state of the art, inspiration for future work, and ideally avenues for continuing to develop research and design ideas generated at the workshop.

Re-formation of healthcare information: an opportunity for health IT.

With the increasing adoption of healthcare IT, there is a need to reinterpret what is considered to be medical records. This study applies ethnographically-based methods to investigate medical information generation and use in an inpatient unit at an academic medical center. The findings will help inform the healthcare communities how healthcare IT can provide an opportunity to re-form healthcare information to better share information within and cross institutions, as well as with patients.

A case study of CPOE adoption and use: work-arounds and their social-technical implications.

This study applies ethnographically-based methods to investigate the socio-technical issues during and after a CPOE system implementation. The research is conducted in an inpatient unit at an academic medical center, where the CPOE is being implemented and clinicians have found to develop ways to workaround the system. The findings of the study will help improve our understanding of the interaction between people, information, and IT systems in a highly efficient and highly collaborative clinical environment.

Designing CIS to improve decisions in depression disease management: a discourse analysis of front line practice.

Clinical care management promises to help diminish the major health problem of depression. To realize this promise, front line clinicians must know which care management interventions are best for which patients and act accordingly. Unfortunately, the detailed intervention data required for such differentiated assessments are missing in most clinical information systems (CIS). To determine frontline clinicians' needs for these data and to identify the data that CIS should keep, we conducted an 18 month ethnographic study and discourse analysis of telehealth depression care management. Results show care managers need data-based evidence to choose best options, and discourse analysis suggests some personalized interventions that CIS should and can feasibly capture for evidence.