Box 1 | Prevailing attitudes of medical professionals emerging from public review and participant survey Agreement with goal of standardizing nomenclature, with acknowledgment of challenges Regarded multiplicity of terms and lack of adherence to established definitions as confusing and potentially leading to errors Anticipated that a standardized nomenclature would help foster consistency in trial design, execution, and reporting Judged consistency between terms used in scholarly and patient communities to be an important goal, but not one overriding the need for precision and efficiency Journal editors strongly agreed that having a more standardized nomenclature for kidney disease would be useful for their journals, but they anticipated time constraints of journal personnel to be the biggest barrier to implementation Qualified endorsement of replacing "renal" with "kidney" Felt that foregrounding "kidney" would be easier for patients and their families Perceived a greater likelihood of raising awareness, attracting funding, and influencing public policy with consistent use of "kidney" Cautioned against a wholesale switch because "renal" may be less awkward in some contexts and may be necessary in others (e.g., ESRD as a CMS definition) Dissatisfaction with "end-stage" as a descriptor of kidney disease Recognized that this wording can be demoralizing and stigmatizing for patients Considered the implication of imminent death to be outdated Frustrated by imprecision in its use (ranging from being a synonym for dialysis patients to a descriptor of patients with kidney failure with or without kidney replacement therapy) Recognition of the need for ongoing attention to nomenclature issues Noted that standardization of nomenclature is dependent on uptake of consensus definitions B where definitions are in flux or are more contentious, standardization of that nomenclature set may be premature B enhancing adoption of definitions requires continued effort Highlighted the need for harmonization with ongoing, broader-scope ontology efforts Expected that improved understanding of molecular mechanisms will lead to more-precise definitions and nomenclature CMS, Centers for Medicare & Medicaid Services; ESRD, end-stage renal disease.
IMPORTANCE Hypertension is very common, but guideline recommendations for hypertension have been controversial, are of increasing interest, and have profound implications. OBJECTIVE To systematically assess the consistency of recommendations regarding hypertension management across clinical practice guidelines (CPGs). DESIGN, SETTING, AND PARTICIPANTS This cross-sectional study of hypertension management recommendations included CPGs that had been published as of April 2018. Two point-of-care resources that provided graded recommendations were included for secondary analyses. Discrete and unambiguous specifications of the population, intervention, and comparison states were used to define a series of reference recommendations. Three raters reached consensus on coding the direction and strength of each recommendation made by each CPG. Three independent raters reached consensus on the importance of each reference recommendation. MAIN OUTCOMES AND MEASURES The main outcomes were rates of consistency for direction and strength among CPGs. Sensitivity analyses testing the robustness were conducted by excluding recommendation statements that were described as insufficient evidence, excluding single recommendation sources, and stratifying by importance of recommendations. RESULTS The analysis included 8 CPGs with a total of 71 reference recommendations, 68 of which had clear recommendations from 2 or more CPGs. Across CPGs, 22 recommendations (32%) were consistent in direction and strength, 18 recommendations (27%) were consistent in direction but inconsistent in strength, and 28 recommendations (41%) were inconsistent in direction. The rate of consistency was lower in secondary analyses. When insufficient evidence ratings were excluded, there was still substantial inconsistency, and a leave-one-out sensitivity analysis suggested the inconsistency could not be attributed to any single recommendation source. Inconsistency in direction was more common for recommendations deemed to be of lower importance (11 of 20 recommendations [55%]), but 17 of 48 high-importance recommendations (35%) had inconsistency in direction. CONCLUSIONS AND RELEVANCE Hypertension is a common chronic condition with widespread expectations surrounding guideline-based care, yet CPGs have a high rate of inconsistency. Further investigations should determine the reasons for inconsistency, the implications for recommendation development, and the role of synthesis across recommendations for optimal guidance of clinical care.
If regulated and well implemented, machines that learn have the potential to bring huge benefit to patients, but who wants to receive a terminal diagnosis from a robot? ask Michael Mittelman, Sarah Markham, and Mark Taylor
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.
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