Identifying Barriers and Facilitators to Care for Infants with Bronchopulmonary Dysplasia After NICU Discharge: A Prospective Study of Parents and Clinical Stakeholders.

Objective: Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD). Methods: Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used. Results: Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance process needs with future trajectories; and integration of primary care, specialty care, and community supports. Conclusions: Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care.

Real-world implementation evaluation of an electronic health record-integrated consumer informatics tool that collects patient-generated contextual data.

OBJECTIVE: Use the RE-AIM framework to examine the implementation of a patient contextual data (PCD) Tool designed to share patients' needs, values, and preferences with care teams ahead of clinical encounters. MATERIALS & METHODS: Observational study that follows initial PCD Tool scaling across primary care at a Midwestern academic health network. Program invitations, enrollment, patient submissions, and clinician views were tracked over a 1-year study period. Logistic regression modeled the likelihood of using the PCD Tool, accounting for patient covariates. RESULTS: Of 58,874 patients who could be contacted by email, 9,183 (15.6%) became PCD Tool users. Overall, 76% of primary care providers had patients who used the PCD Tool. Older age, female gender, non-minority race, patient portal activation, and Medicare coverage were significantly associated with increased likelihood of use. Number of office visits, medical issues, and behavioral health conditions also associated with use. Primary care staff viewed 18.7% of available PCD Tool summaries, 1.1% to 57.6% per clinic. DISCUSSION: The intervention mainly reached non-minority patients and patients who used more health services. Given the requirement for an email address on file, some patients may have been underrepresented. Overall, patient reach and adoption and clinician adoption, implementation, and maintenance of this Tool were modest but stable, consistent with a non-directive approach to fostering adoption by introducing the Tool in the absence of clear expectations for use. CONCLUSION: Healthcare organizations must implement effective methods to increase the reach, adoption, implementation, and maintenance of PCD tools across all patient populations. Assisting people, particularly racial minorities, with PCD Tool registration and actively supporting clinician use are critical steps in implementing technology that facilitates care.

Impact of Pre-visit Contextual Data Collection on Patient-Physician Communication and Patient Activation: a Randomized Trial.

BACKGROUND: Patient contextual data (PCD) are often missing from electronic health records, limiting the opportunity to incorporate preferences and life circumstances into care. Engaging patients through tools that collect and summarize such data may improve communication and patient activation. However, differential tool adoption by race might widen health care disparities. OBJECTIVE: Determine if a digital tool designed to collect and present PCD improves communication and patient activation; secondarily, evaluate if use impacts outcomes by race. DESIGN, SETTING, AND PARTICIPANTS: A pragmatic, two-armed, non-blinded, randomized controlled trial conducted during 2019 in a primary care setting. INTERVENTION: The PCD tool (PatientWisdom) invited patients to identify preferences, values, goals, and barriers to care. Patients were randomized to a standard pre-visit email or facilitated enrollment with dedicated outreach to encourage use of the tool. MAIN OUTCOMES AND MEASURES: Outcomes of interest were post-visit patient communication and patient activation measured by the Communication Assessment Tool (CAT) and Patient Activation Measure (PAM), respectively. Outcomes were evaluated using treatment-on-the-treated (TOT) and intention-to-treat (ITT) principles. KEY RESULTS: A total of 301 patients were enrolled. Facilitated enrollment resulted in a five-fold increase in uptake of the PCD tool. TOT analysis indicated that the PCD tool was associated with notable increases in specific CAT items rated as excellent: "treated me with respect" (+ 13 percentage points; p = 0.04), "showed interest in my ideas" (+ 14 percentage points; p = 0.03), "showed care and concern" (+ 16 percentage points; p = 0.02), and "spent about the right amount of time with me" (+ 11 percentage points; p = 0.05). There were no significant pre/post-visit differences in PAM scores between arms (- 4.41 percentage points; p = 0.58). ITT results were similar. We saw no evidence of the treatment effect varying by race in ITT or TOT analyses. CONCLUSIONS AND RELEVANCE: The inclusion of PCD enhanced essential aspects of patient-provider communication but did not affect patient activation. Outcomes did not differ by race. TRIAL REGISTRATION: Clincaltrials.gov identifier: NCT03766841.

Racial Disparities in Patient Activation: The Role of Economic Diversity.

The Patient Activation Measure (PAM) assesses a person's level of knowledge, skills, and confidence to self-manage their day-to-day health. We conducted a mediation analysis to examine potential direct effects of race on significantly lower baseline PAM scores in Black than in White participants (p<0.001) who were a subset of 184 adults who participated in a randomized controlled trial. In the mediation analysis, using natural indirect effects, the continuous outcome was the PAM score. The mediators were income, education, ability to pay bills, and health literacy; race (Black or White) was the "exposure." The results indicate that income (p=0.025) and difficulty paying monthly bills (p=0.04) mediated the relationship between race and baseline PAM score, whereas health literacy (p=0.301) and education (p=0.436) did not. Researchers must further investigate the role of economic diversity as an underlying mechanism of patient activation and differences in outcomes.Clinical Trial Registration: Avoiding Health Disparities When Collecting Patient Contextual Data for Clinical Care and Pragmatic Research: NCT03766841https://clinicaltrials.gov/ct2/show/NCT03766841?term=crotty&draw=2&rank=1.

The Impact of Previsit Contextual Data Collection on Patient-Provider Communication and Patient Activation: Study Protocol for a Randomized Controlled Trial.

BACKGROUND: Patient-centered care is respectful of and responsive to individual patient preferences, needs, and values. To provide patient-centered care, clinicians need to know and incorporate patients' context into their communication and care with patients. Patient contextual data (PCD) encompass social determinants of health and patients' needs, values, goals, and preferences relevant to their care. PCD can be challenging to collect as a routine component of the time-limited primary care visit. OBJECTIVE: This study aims to determine if patient-provider communication and patient activation are different for patient users and patient nonusers of an electronic health record (EHR)-integrated PCD tool and assess if the impact of using PCD on patient-provider communication and patient activation differs for Black and White patients. METHODS: We describe a randomized controlled trial of a prospective cohort of non-Hispanic White and Black patients who receive primary care services at a midwestern academic health care system in the United States. We will evaluate whether providing PCD through a consumer informatics tool enhances patient-provider communication, as measured by the Communication Assessment Tool, and we will evaluate patient activation, as measured by the Patient Activation Measure for PCD tool users and nonusers. Furthermore, owing to racial disparities in care and communication, we seek to determine if the adoption and use of the tool might narrow the differences between patient groups. RESULTS: The trial was funded in November 2017 and received local ethics review approval in February 2019. The study began recruitment in April 2019 and enrollment concluded in October 2019 with 301 participants. The analysis was completed in May 2020, and trial results are expected to be published in winter 2020. CONCLUSIONS: Recently, there has been increased attention to the role of health information technology tools to enable patients to collaborate with providers through the sharing of PCD. The adoption of such tools may overcome the barriers of current EHRs by directly engaging patients to submit their contextual data. Effectively, these tools would support the EHR in providing a more holistic understanding of the patient. Research further supports that individuals who have robust digital engagement using consumer informatics tools have higher participation in treatment follow-up and self-care across populations. Therefore, it is critical to investigate interventions that elicit and share patients' social risks and care preferences with the health care team as a mechanism to improve individualized care and reduce the gap in health outcomes. TRIAL REGISTRATION: ClinicalTrials.gov NCT03766841; https://clinicaltrials.gov/ct2/show/NCT03766841. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/20309.

The impact of patient-generated contextual data on communication in clinical practice: A qualitative assessment of patient and clinician perspectives.

BACKGROUND: Effective communication is integral to patient-centered care, yet external pressures can impede the ability to discuss important topics. One strategy to facilitate communication is pre-visit collection and sharing of patient contextual data (PCD), including life circumstances such as their beliefs, needs, and concerns. OBJECTIVE: To understand how patients and care team members perceive the electronic collection of PCD and its impact on communication in the context of a large academic health system that implemented PatientWisdom, a new technology that elicits PCD from patients and integrates within the electronic health record (EHR). METHODS: We conducted focus groups with patients (n = 26) and semi-structured interviews with primary care team members (n = 20). Qualitative analysis of focus group/interviews included an iterative and reflexive inductive technique to uncover emergent themes. RESULTS: Four themes were reflected among both patient and care team: (1) the technology enhances the patient's voice; (2) the technology creates a safe space for patients to share sensitive topics; (3) PCD facilitates rapport not only between patient and provider but the entire care team; (4) PCD aligns patient and clinician goals. Two unique themes emerged among patients: (1) PCD provides opportunity for reflection; (2) PCD humanizes patients in the clinical context. One theme was evident in provider comments: collecting PCD may potentially undermine trust if not reviewed by clinical teams. CONCLUSION: PCD collected directly from patients and available within the EHR was seen by patients and care team members as beneficial to communication. PCD collection supports a paradigm shift towards coproduction of health information and a shared responsibility for information gathering but requires investment from patients and care team to ensure the data are effectively utilized. PRACTICE VALUE: PCD may be useful for team-based care, enabling physicians and non-physician staff to more quickly and responsively connect with patients.

Different domains of physical activity: The role of leisure, housework/care work, and paid work in socioeconomic differences in reported physical activity.

Inequality in socioeconomic status (SES)-education, income, and occupation-may further exacerbate the health gap between the "haves" and "have nots" by shaping health behaviors such as physical activity. For example, those in higher socioeconomic positions are consistently found to engage in more physical activity according to public health reports that focus on leisure activity. However, previous research investigating the role of SES in shaping engagement in housework, childcare, and paid work suggests different opportunities for physical activity. This discrepancy in how researchers ask questions about physical activity and the pathways people take to healthy activity raises the question: Do socioeconomic differences in physical activity look different when we look at other domains of physical activity beyond leisure? And, does how we measure SES matter? We draw on data from the American Time Use Survey (ATUS) to assess the roles of education, income, and occupation in the amount of time individuals spend in different types of physical activity. Results demonstrate that socioeconomic differences in physical activity change depending on the activity domain and, therefore, when all domains of physical activity are accounted for compared to leisure-only. Further, the measurement of SES matters: key indicators of SES (education, income, and occupation) have varying associations with levels and types of physical activity. Findings from this research have important implications for the assessment of physical activity across SES, ultimately impacting survey research and public health.

Which activities count? Using experimental data to understand conceptualizations of physical activity.

US health surveys consistently report that men and those with higher socioeconomic status (SES) engage in more physical activity than women and lower SES counterparts, using questions that ask about physical activity during leisure time. However, social characteristics such as gender and SES shape understandings of and access to leisure-based physical activity as well as other domains where healthy activity is available - namely house work, care work, and paid work. Thus, the physical activity of US adults may look different when what counts as physical activity expands beyond leisure activity. The current study uses Amazon's Mechanical Turk platform to conduct a 2-by-2-by-2 factorial experiment that crosses three types of physical activities: leisure, house or care work, and paid work. We find that physical activity questions that prime respondents - that is, ask respondents - to consider house/care work or paid work lead to increased minutes reported of physical activity compared to not priming for physical activity, while asking about leisure is no different from having no physical activity primed. The effect on reported physical activity of priming with house/care work is stronger for women than men, demonstrating support for gendered specialization of time spent in the house and care work domain. The effects on reported physical activity of priming with house/care work and paid work are stronger for those with less education compared to more education, consistent with socioeconomic divisions in access to physical activity in house/care work and employment. This study highlights the contingence of our understanding of the physical activity of US adults on both its measurement in surveys and the social forces which shape understanding of and access to physical activity.