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The patient's voice, which we define as the words the patient uses found in notes and messages and other sources, and their preferences for care and its outcomes, is too small a part of the electronic health record (EHR). To address this shortcoming will require innovation, research, funding, perhaps architectural changes to commercial EHRs, and that we address barriers that have resulted in this state, including clinician burden and financial drivers for care. Advantages to greater patient voice may accrue to many groups of EHR users and to patients themselves. For clinicians, the patient's voice, including symptoms, is invaluable in identifying new serious illness that cannot be detected by screening tests, and as an aid to accurate diagnosis. Informaticians benefit from greater patient voice in the EHR because it provides clues not found elsewhere that aid diagnostic decision support, predictive analytics, and machine learning. Patients benefit when their treatment priorities and care outcomes considered in treatment decisions. What patient voice there is in the EHR today can be found in locations not usually used by researchers. Increasing the patient voice needs be accomplished in equitable ways available to people with less access to technology and whose primary language is not well supported by EHR tools and portals. Use of direct quotations, while carrying potential for harm, permits the voice to be recorded unfiltered. If you are a researcher or innovator, collaborate with patient groups and clinicians to create new ways to capture the patient voice, and to leverage it for good.
Assuntos
Registros Eletrônicos de Saúde , Pacientes , HumanosRESUMO
BACKGROUND: Morbidity and mortality rates related to methamphetamine are on the rise. Simultaneously, social-distancing guidelines were issued in March 2020 to decrease transmission of COVID-19. The aim of this study was to explore concerns regarding methamphetamine use during the COVID-19 pandemic and subsequent harm reduction strategies with patients who use methamphetamine to inform emergency department (ED)-based harm reduction approaches. METHODS: A mixed-methods study of adults residing in Washington with high-risk methamphetamine use and a recent ED visit from April-September 2020 was performed. Participants completed a survey and a semi-structured interview on perceptions and experiences of COVID-19. Descriptive statistics were used for survey responses. Interview transcripts were analyzed and guided by modified grounded theory using an iterative approach to refine the guide and codebook. Interviews were independently coded by 2 investigators and discussed until consensus. RESULTS: Twenty-five participants completed the survey; 20 participants were interviewed (45% recently used heroin, 40% unstably housed). Thirty-five percent was worried about COVID-19 infection. Three themes emerged from the interviews: (1) increase in meth use, (2) interplay of meth obtention and COVID-19, and (3) interactions with healthcare and social services. CONCLUSIONS: People who use methamphetamine noted an increase in use along with the social distancing guidelines put in place for COVID-19 and employed a variety of harm reduction profiles when obtaining methamphetamine. Also, the pandemic brought difficulties in accessing care and amplified mistrust in healthcare instructions and public health messages. Based on these qualitative interviews, further work should consider aligning methamphetamine and COVID-19 harm reduction messages and working with trusted community resources to improve harm reduction strategies for methamphetamine use and COVID-19. IRB: Informed Consent by the University of Washington Human Subjects Division (approval number, STUDY00009277).
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INTRODUCTION: Methamphetamine use is on the rise with increasing emergency department (ED) visits, behavioral health crises, and deaths associated with use and overdose. Emergency clinicians describe methamphetamine use as a significant problem with high resource utilization and violence against staff, but little is known about the patient's perspective. In this study our objective was to identify the motivations for initiation and continued methamphetamine use among people who use methamphetamine and their experiences in the ED to guide future ED-based approaches. METHODS: This was a qualitative study of adults residing in the state of Washington in 2020, who used methamphetamine in the prior 30 days, met criteria for moderate- to high-risk use, reported recently receiving care in the ED, and had phone access. Twenty individuals were recruited to complete a brief survey and semi-structured interview, which was recorded and transcribed prior to being coded. Modified grounded theory guided the analysis, and the interview guide and codebook were iteratively refined. Three investigators coded the interviews until consensus was reached. Data was collected until thematic saturation. RESULTS: Participants described a shifting line that separates the positive attributes from the negative consequences of using methamphetamine. Many initially used methamphetamine to enhance social interactions, combat boredom, and escape difficult circumstances by numbing the senses. However, continued use regularly led to isolation, ED visits for the medical and psychological sequelae of methamphetamine use, and engagement in increasingly risky behaviors. Because of their overwhelmingly frustrating experiences in the past, interviewees anticipated difficult interactions with healthcare clinicians, leading to combativeness in the ED, avoidance of the ED at all costs, and downstream medical complications. Participants desired a non-judgmental conversation and linkage to outpatient social resources and addiction treatment. CONCLUSION: Methamphetamine use can lead patients to seek care in the ED, where they often feel stigmatized and are provided little assistance. Emergency clinicians should acknowledge addiction as a chronic condition, address acute medical and psychiatric symptoms adequately, and provide positive connections to addiction and medical resources. Future work should incorporate the perspectives of people who use methamphetamine into ED-based programs and interventions.