Katharine A. Rendle

A conceptual model of the multiple stages of communication necessary to support patient-centered care.

Patient-centered care requires that both healthcare providers and patients have access to comparative effectiveness research (CER), which provides direct comparisons of the risks and benefits of available clinical options. However, insufficient attention has been paid to developing the comprehensive communication systems necessary to ensure that CER reaches patients and healthcare providers. In this review, we propose a model of the multiple stages of CER communication necessary for patient-centered care and review the existing research and gaps in knowledge relevant to each stage. These stages include: promotion of the underlying concepts and value of CER; translation of CER results; dissemination of CER results; and utilization of the results of CER in shared decision-making between patients and providers. A comprehensive approach to CER communication is necessary to ensure that the growing interest in and availability of CER is able to support a more patient-centered model of healthcare.

The Importance Of Integrating Narrative Into Health Care Decision Making

When making health care decisions, patients and consumers use data but also gather stories from family and friends. When advising patients, clinicians consult the medical evidence but also use professional judgment. These stories and judgments, as well as other forms of narrative, shape decision making but remain poorly understood. Furthermore, qualitative research methods to examine narrative are rarely included in health science research. We illustrate how narratives shape decision making and explain why it is difficult but necessary to integrate qualitative research on narrative into the health sciences. We draw on social-scientific insights on rigorous qualitative research and our ongoing studies of decision making by patients with cancer, and we describe new tools and approaches that link qualitative research findings with the predominantly quantitative health science scholarship. Finally, we highlight the benefits of more fully integrating qualitative research and narrative analysis into the medical evidence base and into evidence-based medical practice.

Persistent barriers and strategic practices: why (asking about) the everyday matters in diabetes care.

Purpose The purpose of this study was to explore the everyday barriers to and practices of low-income patients managing their diabetes. Methods The study team conducted semistructured qualitative interviews with 20 patients with type 2 diabetes who were receiving care at safety-net clinics in Southern California. Transcripts were analyzed using grounded theory to identify emergent themes across participants. Results Participants described managing diabetes with limited financial resources as often a game of balance and negotiation, whereby purchasing healthy foods is abandoned because of a more pressing concern in their life. Although participants described strategic attempts at incorporating healthy dietary practices for diabetes management into their daily decisions, these efforts were significantly impeded by the existence of persistent and seemingly insurmountable barriers. Conclusions Although the challenges that low-income patients face in managing their diabetes may seem insurmountable at times, there are several ways that health care providers can help reduce the burden of these challenges, including tailoring their recommendations to incorporate the everyday socioeconomic environment of patients and engaging in clear, open communication with patients.

Timing Is Everything: Exploring Parental Decisions to Delay HPV Vaccination

The delayed uptake of the human papillomavirus (HPV) vaccine offers an opportunity to explore how temporality and risk are at work in everyday life. Drawing from a mixed-methods study with parents (N = 50) in Northern California, this study explored parents’ decision to delay HPV vaccination for their children among parents who had not yet vaccinated (n = 27). At the core of these decisions were temporal assessments of risk whereby parents weighed their child’s (perceived) present risk of HPV exposure against the uncertain perceived risks of the vaccine itself. Our findings are promising as they indicate that given time, and the continued growth of evidence regarding the safety and effectiveness of HPV vaccination, completion rates should increase. However, our results also suggest that vaccination delays are not merely a matter of scientific doubt but also based on parents’ (potentially inaccurate) perceptions of their child’s sexual readiness, and thus potentially more difficult to overcome.

The promises of computational ethnography: Improving transparency, replicability, and validity for realist approaches to ethnographic analysis

This article argues the advance of computational methods for analyzing, visualizing and disseminating social scientific data can provide substantial tools for ethnographers operating within the broadly realist ‘normal-scientific tradition’ (NST). While computation does not remove the fundamental challenges of method and measurement that are central to social research, new technologies provide resources for leveraging what NST researchers see as ethnography’s strengths (e.g. the production of in situ observations of people over time) while addressing what NST researchers see as ethnography’s weaknesses (e.g. questions of sample size, generalizability and analytical transparency). Specifically, we argue computational tools can help: (1) scale ethnography, (2) improve transparency, (3) allow basic replications, and (4) ultimately address fundamental concerns about internal and external validity. We explore these issues by illustrating the utility of three forms of ethnographic visualization enabled by computational advances – ethnographic heatmaps (ethnoarrays), a combination of participant observation data with techniques from social network analysis (SNA), and text mining. In doing so, we speak to the potential uses and challenges of nascent ‘computational ethnography.’

Implementation of Patient Decision Support Interventions in Primary Care: The Role of Relational Coordination.

Background. The benefits of patient decision support interventions (DESIs) have been well documented. However, DESIs remain difficult to incorporate into clinical practice. Relational coordination (RC) has been shown to improve performance and quality of care in health care settings. This study aims to demonstrate how applying RC theory to DESI implementation could elucidate underlying issues limiting widespread uptake. Methods. Five primary care clinics in Northern California participated in a DESI implementation project. We used a deductive thematic approach guided by behaviors outlined in RC theory to analyze qualitative data collected from ethnographic field notes documenting the implementation process and focus groups with health care professionals. We then systematically compared the qualitative findings with quantitative DESI distribution data. Results. Based on DESI distribution rates, clinics were placed into 3 performance categories: high, middle, and low. Qualitative data illustrated how each clinic’s performance related to RC behaviors. Consistent with RC theory, the high-performing clinic exhibited frequent, timely, and accurate communication and positive working relationships. The 3 middle-performing clinics exhibited high-quality communication within physician-staff teams but limited communication regarding DESI implementation across the clinic. The lowest-performing clinic was characterized by contentious relationships and inadequate communication. Limitations. Limitations of the study include nonrandom selection of clinics and limited geographic diversity. In addition, ethnographic data collected documented only DESI implementation practices and not larger staff interactions contributing to RC. Conclusions. These findings suggest that a high level of RC within clinical settings may be a key component and facilitator of successful DESI implementation. Future attempts to integrate DESIs into clinical practice should consider incorporating interventions designed to increase positive RC behaviors as a potential means to improve uptake.

An exploratory mixed‐methods crossover study comparing DVD‐ vs. Web‐based patient decision support in three conditions: The importance of patient perspectives

The last 15 years have witnessed considerable progress in the development of decision support interventions (DESIs). However, fundamental questions about design and format of delivery remain.

Timely follow-up of positive cancer screening results: A systematic review and recommendations from the PROSPR Consortium

Timely follow‐up for positive cancer screening results remains suboptimal, and the evidence base to inform decisions on optimizing the timeliness of diagnostic testing is unclear. This systematic review evaluated published studies regarding time to follow‐up after a positive screening for breast, cervical, colorectal, and lung cancers. The quality of available evidence was very low or low across cancers, with potential attenuated or reversed associations from confounding by indication in most studies. Overall, evidence suggested that the risk for poorer cancer outcomes rises with longer wait times that vary within and across cancer types, which supports performing diagnostic testing as soon as feasible after the positive result, but evidence for specific time targets is limited. Within these limitations, we provide our opinion on cancer‐specific recommendations for times to follow‐up and how existing guidelines relate to the current evidence. Thresholds set should consider patient worry, potential for loss to follow‐up with prolonged wait times, and available resources. Research is needed to better guide the timeliness of diagnostic follow‐up, including considerations for patient preferences and existing barriers, while addressing methodological weaknesses. Research is also needed to identify effective interventions for reducing wait times for diagnostic testing, particularly in underserved or low‐resource settings. CA Cancer J Clin 2018;68:199–216.

Approaches to decision-making among late-stage melanoma patients: a multifactorial investigation

PurposeThe treatment decisions of melanoma patients are poorly understood. Most research on cancer patient decision-making focuses on limited components of specific treatment decisions. This study aimed to holistically characterize late-stage melanoma patients’ approaches to treatment decision-making in order to advance understanding of patient influences and supports.Methods(1) Exploratory analysis of longitudinal qualitative data to identify themes that characterize patient decision-making. (2) Pattern analysis of decision-making themes using an innovative method for visualizing qualitative data: a hierarchically-clustered heatmap. Participants were 13 advanced melanoma patients at a large academic medical center.ResultsExploratory analysis revealed eight themes. Heatmap analysis indicated two broad types of patient decision-makers. “Reliant outsiders” relied on providers for medical information, demonstrated low involvement in decision-making, showed a low or later-in-care interest in clinical trials, and expressed altruistic motives. “Active insiders” accessed substantial medical information and expertise in their networks, consulted with other doctors, showed early and substantial interest in trials, demonstrated high involvement in decision-making, and employed multiple decision-making strategies.ConclusionWe identified and characterized two distinct approaches to decision-making among patients with late-stage melanoma. These differences spanned a wide range of factors (e.g., behaviors, resources, motivations). Enhanced understanding of patients as decision-makers and the factors that shape their decision-making may help providers to better support patient understanding, improve patient-provider communication, and support shared decision-making.

Abstract 2579: Longitudinal predictors of adherence to cervical cancer cotesting guidelines

Introduction: Although clinical guidelines recommend cervical cancer screening using human papillomavirus (HPV) combined with Papanicolaou (Pap) testing for average-risk women, little is known about the longitudinal adoption of cotesting in clinical care, or if interval extension resistance is evident in practice. Using data from Kaiser Permanente Northern California (KPNC), which switched from annual Pap to 3-year interval cotesting in 2003, we examined predictors of cotesting guideline adherence. Methods: We included all female patients aged 30-64 years who underwent baseline cotesting between 2003-2007 and completed at least one additional screening within 5.5 years. We excluded patients with a documented history of >CIN2, or positive HPV test at baseline or subsequent screenings (leaving 335,822 patients for analysis). We categorized interval length between cotesting into 3 categories: early ( Results: Compared with the earliest cohort of women (baseline cotesting in 2003), the 2007 cohort was 66% and 52% less likely of being screened early (aOR = 0.34, 95% CI: 0.33, 0.35) or late (aOR = 0.48, 95% CI: 0.46, 0.50). However, among women classified as persistent early screeners, we found no clear trend in the relationship between year of initial cotesting and interval length. The strongest predictor of persistent early screening was older age, whereby women aged 60-64 years had the greatest likelihood of being a persistent early screener (aOR = 2.1, 95% CI: 1.9, 2.3) versus women aged 30-34 years. Despite subsequent negative screens, women reporting a previous low-grade abnormal Pap at baseline had a greater likelihood of being a persistent early screener compared with women who did not (aOR = 1.8, 95% CI: 1.6, 2.0). Conclusions: Overall, women who underwent baseline cotesting in more recent years were significantly more likely to adhere to the recommended interval length than women in earlier years, indicating an increase in adoption of cotesting guidelines over time. However, there remain subgroups, including older women, which appear less likely to follow extended cotesting intervals. Further research is needed to understand these HPV screening practices in other healthcare settings and identify additional (potentially modifiable) patient and provider factors that are associated with screening practices. Citation Format: Katharine A. Rendle, Mark Schiffman, Li C. Cheung, Walter K. Kinney, Barbara Fetterman, Nancy E. Poitras, Philip E. Castle. Longitudinal predictors of adherence to cervical cancer cotesting guidelines. [abstract]. In: Proceedings of the 107th Annual Meeting of the American Association for Cancer Research; 2016 Apr 16-20; New Orleans, LA. Philadelphia (PA): AACR; Cancer Res 2016;76(14 Suppl):Abstract nr 2579.