Nothing for Me or About Me, Without Me: Codesign of Clinical Decision Support.

BACKGROUND: Partnerships among patients, families, caregivers, and clinicians are critical to helping patients lead their best lives given their specific genetics, conditions, circumstances, and the environments in which they live, work, and play. These partnerships extend to the development of health information technology, including clinical decision support (CDS). Design of these technologies, however, often occurs without a profound understanding of the true needs, wants, and concerns of patients and family members. Patient perspective is important not only for patient-facing applications but for provider-facing applications, especially those intended to support shared decision-making. OBJECTIVES: Our objective is to describe models for effectively engaging patients and caregivers during CDS development and implementation and to inspire CDS developers to partner with patients and caregivers to improve the potential impact of CDS. METHODS: This article serves as a case study of how two patient activists successfully implemented models for engaging patients and caregivers in a federal program designed to increase the uptake of research evidence into clinical practice through CDS. Models included virtual focus groups, social media, agile software development, and attention to privacy and cybersecurity. RESULTS: Impact on the federal program has been substantial and has resulted in improved CDS training materials, new prototype CDS applications, prioritization of new functionality and features, and increased engagement of patient and caregiver communities in ongoing projects. Among these opportunities is a group of developers and patient activists dedicated and committed to exploring strategic and operational opportunities to codesign CDS applications. CONCLUSION: Codesign and implementation of CDS can occur as a partnership among developers, implementers, patients, cybersecurity and privacy activists, and caregivers. Several approaches are viable, and an iterative process is most promising. Additional work is needed to investigate scalability of the approaches explored by this case study and to identify measures of meaningful inclusion of patients/caregivers in CDS projects.

The NQF Scientific Methods Panel: Enhancing the Review and Endorsement Process for Performance Measures.

In the summer of 2017, the National Quality Forum (NQF) announced the formation of a Scientific Methods Panel (hereafter referred to as "the Panel") as part of a redesign of its endorsement process. NQF created the Panel in response to stakeholder request during a Kaizen improvement event held in May 2017. Given the Panel's role in the endorsement of performance measures used in national payment programs, the objective of this article is to describe the work of the Panel, and to describe its function in the larger context of the NQF measure endorsement process and in the measurement enterprise writ large. This article also serves as an introduction to a series of planned white papers being authored by the panel on specific technical issues in the area of health care performance measurement.

Ad lib smoking of Black & Mild cigarillos and cigarettes.

INTRODUCTION: Over the past 20 years, there has been a tripling in the consumption of small cigars and cigarillos, with further increases expected because cigar products are not subject to Food and Drug Administration regulations. Acute toxin exposure from cigar smoking is difficult to assess because unlike cigarettes, cigars vary widely in size, design, composition, and in the smoking behavior of their consumers. For example, a recent practice among urban youth is to remove the paper liner (i.e., "freaking") of a small cigar in the belief that it is this paper liner that leads to addiction and cancer. METHODS: We examined acute exposure (CO and nicotine boosts) and puffing behavior in 12 participants (10 men) who smoked (ad lib) their usual conventional cigarette, a Black & Mild cigar (B&M) and a B&M without the paper liner (i.e., "freaked" [B&Mf]). RESULTS: All products (cigarettes, B&M, and B&Mf) significantly increased heart rate and CO with a trend for plasma nicotine. Nicotine boost was significantly higher after cigarette smoking than both B&M and B&Mf, while CO boost was significantly greater after B&M and B&Mf than cigarettes. The CO boost after B&M was larger than after B&Mf. CONCLUSIONS: These findings suggest that small cigar smoking is associated with smoke inhalation that leads to significant exposure to nicotine, CO, and presumably other components of tobacco smoke and that removing the inner liner does not substantially reduce toxin exposure.

Ethnicity, catastrophizing, and qualities of the pain experience.

OBJECTIVE: It is generally well established that catastrophizing exerts a potent influence on individuals' experience of pain and accompanying emotional distress. Further, preliminary evidence has shown that meaningful differences among various pain relevant outcomes (e.g., pain ratings, endogenous pain inhibitory processes) can be attributed to individuals' ethnic background. The mechanisms that might explain ethnic differences in pain outcomes are unclear, and it remains to be fully established whether the relation between ethnicity and pain response may be indirectly affected by pain catastrophizing. DESIGN: In the current study, we examined differences in pain responses by ethnicity among healthy, young adults (N=62), and attempted to determine whether such an ethnicity-pain relation was mediated by catastrophizing using the standard Pain Catastrophizing Scale (PCS) and a modified version of the PCS reflecting situational catastrophizing during a cold pressor task. RESULTS: Results showed that pain responses varied by ethnicity, as did reported catastrophizing. Catastrophizing mediated the relation between ethnicity and affective and sensory pain responses. CONCLUSIONS: To better explicate our findings, we described the context in which these findings occurred following a "who, what, where, when, and why" approach. This approach provides an efficient description of how our findings align with previous research, while identifying future research that should clarify the theoretical underpinnings of catastrophizing and pain and also inform clinical intervention.

Pain catastrophizing mediates the relationship between self-reported strenuous exercise involvement and pain ratings: moderating role of anxiety sensitivity.

OBJECTIVE: To investigate the cross-sectional associations among self-reported weekly strenuous exercise bouts, anxiety sensitivity, and their interaction with pain catastrophizing and pain responses to the cold pressor task (CPT) in healthy, ethnically diverse young adults (n = 79). Exercise involvement has been shown to have hypoalgesic effects and cognitive factors may partially explain this effect. Particularly, alterations in pain catastrophizing have been found to mediate the positive pain outcomes of multidisciplinary treatments incorporating exercise. Further, recent evidence suggests that exercise involvement and anxiety sensitivity may act together, as interacting factors, to exert an effect on catastrophizing and pain outcomes; however, further research is needed to clarify the nature of this interaction. METHODS: Before the CPT, participants were asked to complete the Godin Leisure-Time Exercise Questionnaire, the Beck Depression Inventory, and the Anxiety Sensitivity Index. After the CPT, participants completed a modified version of the Pain Catastrophizing Scale and the Short Form-McGill Pain Questionnaire. RESULTS: At a high level of anxiety sensitivity, controlling for depressive symptoms, CPT immersion time, and sex differences, a bias-corrected (BC), bootstrapped confidence interval revealed that pain catastrophizing significantly mediated the relationship between self-reported weekly strenuous exercise bouts and pain response (95% BC Confidence Interval = -9.558, -0.800 with 1000 resamples). At intermediate and low levels of anxiety sensitivity, no significant mediation effects were found. CONCLUSIONS: These findings support that, for pain catastrophizing to mediate the strenuous exercise-pain response relation, individuals must possess a high level of anxiety sensitivity.