Relatively little is known about why some patients are reluctant to engage in a collaborative discussion with physicians about their choices in health care. To explore this issue further, we conducted six focus-group sessions with forty-eight people in the San Francisco Bay Area. In the focus groups, we found that participants voiced a strong desire to engage in shared decision making about treatment options with their physicians. However, several obstacles inhibit those discussions. These include the fact that even relatively affluent and well-educated patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations; that physicians can be authoritarian; and that the fear of being categorized as "difficult" prevents patients from participating more fully in their own health care. We argue that physicians may not be aware of a need to create a safe environment for open communication to facilitate shared decision making. Rigorous measures of patient engagement, and of the degree to which health care decisions truly reflect patient preferences, are needed to advance shared decision making in clinical practice.
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. © 2018 American Cancer Society.
Despite the proven efficacy of decision aids as interventions for increasing patient engagement and facilitating shared decision making, they are not used routinely in clinical care. Findings from a project designed to achieve such integration, conducted at five primary care practices in 2010-12, document low rates of distribution of decision aids to eligible patients due for colorectal cancer screening (9.3 percent) and experiencing back pain (10.7 percent). There were also no lasting increases in distribution rates in response to training sessions and other promotional activities for physicians and clinic staff. The results of focus groups, ethnographic field notes, and surveys suggest that major structural and cultural changes in health care practice and policy are necessary to achieve the levels of use of decision aids and shared decision making in routine practice envisioned in current policy. Among these changes are ongoing incentives for use, physician training, and a team-based practice model in which all care team members bear formal responsibility for the use of decision aids in routine primary care. I ncreasing patient engagement has been advocated as a top priority for improving health care quality.1 Providing patients with information about their clinical options and activating patients to participate in informed discussions regarding their care are the foundation of shared decision making and a potential mechanism for increasing patients' engagement in their care.These concepts are particularly relevant when preference-sensitive decisions are being made, such as the choice of method for colorectal cancer screening or of treatment for back pain. In preference-sensitive decisions, more than one available option exists, each of which carries different risks and benefits, and patients' treatment preferences can vary. 3Although many potential pathways may be taken to help facilitate preference-sensitive decisions, the use of decision aids has been a commonly proposed and studied intervention. Decision aids, which are specifically designed to provide patients with the information necessary to engage in shared decision making with their care providers, serve as an adjunct to clinical consultations. They come in a variety of formats, including video, print, and online.The use of decision aids has been shown to increase patients' knowledge of available treatment options and to help clarify patients' preferences. 4 For example, national clinical practice guidelines suggest that the decision to undergo colorectal cancer screening be a shared one between physicians and patients, because multiple efficacious screening methods are available. 2 Studies have shown that patients' preferences for specific methods of colorectal cancer screening vary, and the use of decision aids on this topic has been linked to increases in screening rates. 5 However, there is evidence that despite physi-
The objective of this commentary is to develop a framework for assessing the rigour of qualitative approaches that identifies and distinguishes between the diverse objectives of qualitative health research, guided by a narrative review of the published literature on qualitative guidelines and standards from peer-reviewed journals and national funding organisations that support health services research, patient-centered outcomes research and other applied health research fields. In this framework, we identify and distinguish three objectives of qualitative studies in applied health research: exploratory, descriptive and comparative. For each objective, we propose methodological standards that may be used to assess and improve rigour across all study phases—from design to reporting. Similar to hierarchies of quality of evidence within quantitative studies, we argue that standards for qualitative rigour differ, appropriately, for studies with different objectives and should be evaluated as such. Distinguishing between different objectives of qualitative health research improves the ability to appreciate variation in qualitative studies and to develop appropriate evaluations of the rigour and success of qualitative studies in meeting their stated objectives. Researchers, funders and journal editors should consider how further developing and adopting the framework for assessing qualitative rigour outlined here may advance the rigour and potential impact of this important mode of inquiry.
Background & Aims: Colorectal cancer (CRC) deaths occur when patients do not receive screening or have inadequate follow up of abnormal results, or when the screening test itself fails. We have few data on the contribution of each to CRC-associated deaths or factors associated with these events. Methods: We performed a retrospective cohort study of patients in the Kaiser Permanente Northern and Southern California systems (55–90 years old) who died from CRC from 2006 through 2012 and had ≥5 years of enrollment prior to diagnosis. We compared data from patients with a matched cohort of cancer-free patients in the same system. Receipt, results, indications, and follow up of CRC tests in the 10-year period prior to diagnosis were obtained from electronic databases and chart audits. Results: Among 1750 CRC deaths, 75.9% (n=1328) occurred in patients who were not up to date in screening and 24.1% (n=422) occurred in patients who were up to date. Failure to screen was associated with fewer visits to primary care physicians. Among 3486 cancer-free patients, 44.6% were up to date on their screening. Patients who were up to date in their screening had reduced risk of CRC death (odds ratio [OR], 0.38; 95% CI, 0.33–0.44). Failure to screen, or failure to screen at appropriate intervals, occurred in a 67.8% of patients who died from CRC vs 53.2% of cancer-free patients; failure to follow up on abnormal results occurred in 8.1% of patients who died from CRC vs 2.2% of cancer-free patients. CRC death was associated with higher odds of failure to screen or failure to screen at appropriate intervals (OR, 2.40; 95% CI, 2.07–2.77) and failure to follow up on abnormal results (OR, 7.26; 95% CI, 5.26–10.03). Conclusions: Being up to date on screening substantially reduces risk of CRC death. In 2 healthcare systems with high rates of screening, most people who died from CRC had failures in the screening process that could be rectified, such as failure to follow up on abnormal findings; these significantly increased risk for CRC death.
Precision medicine, an emerging approach for disease treatment that takes into account individual variability in genes, environment, and lifestyle, is under consideration for preventive interventions, including cancer screening. On September 29, 2015, the National Cancer Institute sponsored a symposium entitled “Precision Cancer Screening in the General Population: Evidence, Epidemiology, and Next Steps”. The goal was two-fold: to share current information on the evidence, practices, and challenges surrounding precision screening for breast, cervical, colorectal, lung, and prostate cancers, and to allow for in-depth discussion among experts in relevant fields regarding how epidemiology and other population sciences can be used to generate evidence to inform precision screening strategies. Attendees concluded that the strength of evidence for efficacy and effectiveness of precision strategies varies by cancer site, that no one research strategy or methodology would be able or appropriate to address the many knowledge gaps in precision screening, and that issues surrounding implementation must be researched as well. Additional discussion needs to occur to identify the high priority research areas in precision cancer screening for pertinent organs and to gather the necessary evidence to determine whether further implementation of precision cancer screening strategies in the general population would be feasible and beneficial.
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.’
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