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1.
Am J Hum Genet ; 108(11): 2027-2036, 2021 11 04.
Artículo en Inglés | MEDLINE | ID: mdl-34687653

RESUMEN

Prior to integration into clinical care, a novel medical innovation is typically assessed in terms of its balance of benefits and risks, often referred to as utility. Members of multidisciplinary research teams may conceptualize and assess utility in different ways, which has implications within the translational genomics community and for the evidence base upon which clinical guidelines groups and healthcare payers make decisions. Ambiguity in the conceptualization of utility in translational genomics research can lead to communication challenges within research teams and to study designs that do not meet stakeholder needs. We seek to address the ambiguity challenge by describing the conceptual understanding of utility and use of the term by scholars in the fields of philosophy, medicine, and the social sciences of decision psychology and health economics. We illustrate applications of each field's orientation to translational genomics research by using examples from the Clinical Sequencing Evidence-Generating Research (CSER) consortium, and we provide recommendations for increasing clarity and cohesion in future research. Given that different understandings of utility will align to a greater or lesser degree with important stakeholders' views, more precise use of the term can help researchers to better integrate multidisciplinary investigations and communicate with stakeholders.


Asunto(s)
Formación de Concepto , Genómica , Investigación Biomédica Traslacional , Humanos
2.
N Engl J Med ; 385(26): 2441-2450, 2021 12 23.
Artículo en Inglés | MEDLINE | ID: mdl-34936740

RESUMEN

BACKGROUND: Effective strategies are needed to facilitate the prompt diagnosis and treatment of tuberculosis in countries with a high burden of the disease. METHODS: We conducted a cluster-randomized trial in which Ugandan community health centers were assigned to a multicomponent diagnostic strategy (on-site molecular testing for tuberculosis, guided restructuring of clinic workflows, and monthly feedback of quality metrics) or routine care (on-site sputum-smear microscopy and referral-based molecular testing). The primary outcome was the number of adults treated for confirmed tuberculosis within 14 days after presenting to the health center for evaluation during the 16-month intervention period. Secondary outcomes included completion of tuberculosis testing, same-day diagnosis, and same-day treatment. Outcomes were also assessed on the basis of proportions. RESULTS: A total of 20 health centers underwent randomization, with 10 assigned to each group. Of 10,644 eligible adults (median age, 40 years) whose data were evaluated, 60.1% were women and 43.8% had human immunodeficiency virus infection. The intervention strategy led to a greater number of patients being treated for confirmed tuberculosis within 14 days after presentation (342 patients across 10 intervention health centers vs. 220 across 10 control health centers; adjusted rate ratio, 1.56; 95% confidence interval [CI], 1.21 to 2.01). More patients at intervention centers than at control centers completed tuberculosis testing (adjusted rate ratio, 1.85; 95% CI, 1.21 to 2.82), received a same-day diagnosis (adjusted rate ratio, 1.89; 95% CI, 1.39 to 2.56), and received same-day treatment for confirmed tuberculosis (adjusted rate ratio, 2.38; 95% CI, 1.57 to 3.61). Among 706 patients with confirmed tuberculosis, a higher proportion in the intervention group than in the control group were treated on the same day (adjusted rate ratio, 2.29; 95% CI, 1.23 to 4.25) or within 14 days after presentation (adjusted rate ratio, 1.22; 95% CI, 1.06 to 1.40). CONCLUSIONS: A multicomponent diagnostic strategy that included on-site molecular testing plus implementation supports to address barriers to delivery of high-quality tuberculosis evaluation services led to greater numbers of patients being tested, receiving a diagnosis, and being treated for confirmed tuberculosis. (Funded by the National Heart, Lung, and Blood Institute; XPEL-TB ClinicalTrials.gov number, NCT03044158.).


Asunto(s)
Centros Comunitarios de Salud/organización & administración , Técnicas de Diagnóstico Molecular , Pruebas en el Punto de Atención , Tuberculosis/diagnóstico , Adulto , Femenino , Infecciones por VIH/complicaciones , Infecciones por VIH/diagnóstico , Humanos , Masculino , Persona de Mediana Edad , Modelos Estadísticos , Técnicas de Amplificación de Ácido Nucleico , Tiempo de Tratamiento , Tuberculosis/complicaciones , Tuberculosis/tratamiento farmacológico , Uganda
3.
Liver Transpl ; 30(7): 717-727, 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38166123

RESUMEN

Disparities exist in pediatric liver transplant (LT). We characterized barriers and facilitators to providing transplant and social care within pediatric LT clinics. This was a multicenter qualitative study. We oversampled caregivers reporting household financial strain, material economic hardship, or demonstrating poor health literacy. We also enrolled transplant team members. We conducted semistructured interviews with participants. Caregiver interviews focused on challenges addressing transplant and household needs. Transplant provider interviews focused on barriers and facilitators to providing social care within transplant teams. Interviews were recorded, transcribed, and coded according to the Capability, Opportunity, Motivation-Behavior model. We interviewed 27 caregivers and 27 transplant team members. Fifty-two percent of caregivers reported a household income <$60,000, and 62% reported financial resource strain. Caregivers reported experiencing (1) high financial burdens after LT, (2) added caregiving labor that compounds the financial burden, (3) dependency on their social network's generosity for financial and logistical support, and (4) additional support being limited to the perioperative period. Transplant providers reported (1) relying on the pretransplant psychosocial assessment for identifying social risks, (2) discomfort initiating social risk discussions in the post-transplant period, (3) reliance on social workers to address new social risks, and (4) social workers feeling overburdened by quantity and quality of the social work referrals. We identified barriers to providing effective social care in pediatric LT, primarily a lack of comfort in assessing and addressing new social risks in the post-transplant period. Addressing these barriers should enhance social care delivery and improve outcomes for these children.


Asunto(s)
Cuidadores , Trasplante de Hígado , Investigación Cualitativa , Humanos , Trasplante de Hígado/psicología , Trasplante de Hígado/efectos adversos , Trasplante de Hígado/estadística & datos numéricos , Trasplante de Hígado/economía , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Cuidadores/economía , Masculino , Femenino , Niño , Preescolar , Adulto , Adolescente , Apoyo Social , Lactante , Costo de Enfermedad , Entrevistas como Asunto , Actitud del Personal de Salud , Persona de Mediana Edad , Disparidades en Atención de Salud/estadística & datos numéricos , Disparidades en Atención de Salud/economía , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/economía , Accesibilidad a los Servicios de Salud/organización & administración , Adulto Joven
4.
Hepatology ; 2023 Aug 23.
Artículo en Inglés | MEDLINE | ID: mdl-37611253

RESUMEN

Significant quality gaps exist in the management of chronic liver diseases and cirrhosis. Clinical decision support systems-information-driven tools based in and launched from the electronic health record-are attractive and potentially scalable prospective interventions that could help standardize clinical care in hepatology. Yet, clinical decision support systems have had a mixed record in clinical medicine due to issues with interoperability and compatibility with clinical workflows. In this review, we discuss the conceptual origins of clinical decision support systems, existing applications in liver diseases, issues and challenges with implementation, and emerging strategies to improve their integration in hepatology care.

5.
Milbank Q ; 101(4): 1304-1326, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-37593794

RESUMEN

Policy Points State and federal payers are actively considering strategies to increase the adoption of social risk screening and interventions in health care settings, including through the use of financial incentives. Activities related to social care in Oregon community health centers (CHCs) provided a unique opportunity to explore whether and how fee-for-service payments for social risk screening and navigation influence CHC activities. CHC staff, clinicians, and administrative leaders were often unaware of existing financial payments for social risk screening and navigation services. As currently designed, fee-for-service payments are unlikely to strongly influence CHC social care practices. CONTEXT: A growing crop of national policies has emerged to encourage health care delivery systems to ask about and try to address patients' social risks, e.g., food, housing, and transportation insecurity, in care delivery contexts. In this study, we explored how community health center (CHC) staff perceive the current and potential influence of fee-for-service payments on clinical teams' engagement in these activities. METHODS: We interviewed 42 clinicians, frontline staff, and administrative leaders from 12 Oregon CHC clinical sites about their social care initiatives, including about the role of existing or anticipated financial payments intended to promote social risk screening and referrals to social services. Data were analyzed using both inductive and deductive thematic analysis approaches. FINDINGS: We grouped findings into three categories: participants' awareness of existing or anticipated financial incentives, uses for incentive dollars, and perceived impact of financial incentives on social care activities in clinical practices. Lack of awareness of existing incentives meant these incentives were not perceived to influence the behaviors of staff responsible for conducting screening and providing referrals. Current or anticipated meaningful uses for incentive dollars included paying for social care staff, providing social services, and supporting additional fundraising efforts. Frontline staff reported that the strongest motivator for clinic social care practices was the ability to provide responsive social services. Clinic leaders/managers noted that for financial incentives to substantively change CHC practices would require payments sizable enough to expand the social care workforce as well. CONCLUSIONS: Small fee-for-service payments to CHCs for social risk screening and navigation services are unlikely to markedly influence CHC social care practices. Refining the design of financial incentives-e.g., by increasing clinical teams' awareness of incentives, linking screening to well-funded social services, and changing incentive amounts to support social care staffing needs-may increase the uptake of social care practices in CHCs.


Asunto(s)
Atención a la Salud , Planes de Aranceles por Servicios , Humanos , Apoyo Social , Servicio Social , Centros Comunitarios de Salud
6.
Prenat Diagn ; 43(11): 1394-1405, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37752660

RESUMEN

OBJECTIVE: There is increasing evidence supporting the clinical utility of next generation sequencing for identifying fetal genetic disorders. However, there are limited data on the demand for and accessibility of these tests, as well as payer coverage in the prenatal context. We sought to identify clinician perspectives on the utility of prenatal exome sequencing (ES) and on equitable access to genomic technologies for the care of pregnancies complicated by fetal structural anomalies. METHOD: We conducted two focus group discussions and six interviews with a total of 13 clinicians (11 genetic counselors; 2 Maternal Fetal Medicine/Geneticists) from U.S. academic centers and community clinics. RESULTS: Participants strongly supported ES for prenatal diagnostic testing in pregnancies with fetal structural anomalies. Participants emphasized the value of prenatal ES as an opportunity for a continuum of care before, during, and after a pregnancy, not solely as informing decisions about abortions. Cost and coverage of the test was the main access barrier, and research was the main pathway to access ES in academic centers. CONCLUSION: Further integrating the perspectives of additional key stakeholders are important for understanding clinical utility, developing policies and practices to address access barriers, and assuring equitable provision of prenatal diagnostic testing.


Asunto(s)
Aborto Espontáneo , Ultrasonografía Prenatal , Embarazo , Femenino , Humanos , Secuenciación del Exoma , Primer Trimestre del Embarazo , Feto/diagnóstico por imagen , Diagnóstico Prenatal
7.
Genet Med ; 24(2): 410-418, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-34906477

RESUMEN

PURPOSE: This study aimed to understand broad data sharing decisions among predominantly underserved families participating in genomic research. METHODS: Drawing on clinic observations, semistructured interviews, and survey data from prenatal and pediatric families enrolled in a genomic medicine study focused on historically underserved and underrepresented populations, this paper expands empirical evidence regarding genomic data sharing communication and decision-making. RESULTS: One-third of parents declined to share family data, and pediatric participants were significantly more likely to decline than prenatal participants. The pediatric population was significantly more socioeconomically disadvantaged and more likely to require interpreters. Opt-in was tied to altruism and participants' perception that data sharing was inherent to research participation. Opt-out was associated with privacy concerns and influenced by clinical staff's presentation of data handling procedures. The ability of participants to make informed choices during enrollment about data sharing was weakened by suboptimal circumstances, which was revealed by poor understanding of data sharing in follow-up interviews as well as discrepancies between expressed participant desires and official recorded choices. CONCLUSION: These empirical data suggest that the context within which informed consent process is conducted in clinical genomics may be inadequate for respecting participants' values and preferences and does not support informed decision-making processes.


Asunto(s)
Medicina Genómica , Consentimiento Informado , Niño , Genómica , Humanos , Difusión de la Información , Privacidad
8.
Genet Med ; 24(5): 1108-1119, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-35227608

RESUMEN

PURPOSE: There is a critical need for genomic medicine research that reflects and benefits socioeconomically and ancestrally diverse populations. However, disparities in research populations persist, highlighting that traditional study designs and materials may be insufficient or inaccessible to all groups. New approaches can be gained through collaborations with patient/community stakeholders. Although some benefits of stakeholder engagement are recognized, routine incorporation into the design and implementation of genomics research has yet to be realized. METHODS: The National Institutes of Health-funded Clinical Sequencing Evidence-Generating Research (CSER) consortium required stakeholder engagement as a dedicated project component. Each CSER project planned and carried out stakeholder engagement activities with differing goals and expected outcomes. Examples were curated from each project to highlight engagement strategies and outcomes throughout the research lifecycle from development through dissemination. RESULTS: Projects tailored strategies to individual study needs, logistical constraints, and other challenges. Lessons learned include starting early with engagement efforts across project stakeholder groups and planned flexibility to enable adaptations throughout the project lifecycle. CONCLUSION: Each CSER project used more than 1 approach to engage with relevant stakeholders, resulting in numerous adaptations and tremendous value added throughout the full research lifecycle. Incorporation of community stakeholder insight improves the outcomes and relevance of genomic medicine research.


Asunto(s)
Medicina Genómica , Participación de los Interesados , Genómica , Humanos , Grupos de Población , Proyectos de Investigación
9.
Genet Med ; 24(6): 1206-1216, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35396980

RESUMEN

PURPOSE: Patients undergoing clinical exome sequencing (ES) are routinely offered the option to receive secondary findings (SF). However, little is known about the views of individuals from underrepresented minority pediatric or prenatal populations regarding SF. METHODS: We explored the preferences for receiving hypothetical categories of SF (H-SF) and reasons for accepting or declining actual SF through surveying (n = 149) and/or interviewing (n = 47) 190 families undergoing pediatric or prenatal ES. RESULTS: Underrepresented minorities made up 75% of the probands. In total, 150 families (79%) accepted SF as part of their child/fetus's ES. Most families (63%) wanted all categories of H-SF. Those who declined SF as part of ES were less likely to want H-SF across all categories. Interview findings indicate that some families did not recall their SF decision. Preparing for the future was a major motivator for accepting SF, and concerns about privacy, discrimination, and psychological effect drove decliners. CONCLUSION: A notable subset of families (37%) did not want at least 1 category of H-SF, suggesting more hesitancy about receiving all available results than previously reported. The lack of recollection of SF decisions suggests a need for alternative communication approaches. Results highlight the importance of the inclusion of diverse populations in genomic research.


Asunto(s)
Familia , Genómica , Niño , Exoma/genética , Femenino , Genoma Humano , Humanos , Embarazo , Secuenciación del Exoma/métodos
10.
Policy Polit Nurs Pract ; 23(2): 98-108, 2022 May.
Artículo en Inglés | MEDLINE | ID: mdl-35317690

RESUMEN

Workplace violence (WV) is a significant and growing problem for health care workers. Increased recognition of the need for improved protections has led to policy initiatives at the state and federal levels, including national Joint Commission requirements that went into effect January 2022. California's WV prevention legislation was phased in during 2017-2018 and requires hospitals to use a new incident reporting system, the Workplace Violent Incident Reporting System (WVIRS) for Hospitals. We analyzed WVIRS data collected during the first three years of its implementation, July 1, 2017 - June 30, 2020. In addition, we collected qualitative data from six California hospitals/hospital systems during 2019-2020 to better understand reporting practices. Over the three-year period, the 413 hospitals using the WVIRS reported between zero and six incidents per staffed bed. Sixteen hospitals (3.9%) reported two or more incidents per staffed bed while the rest reported fewer than two incidents. Qualitative analysis identified that reporting procedures vary considerably among hospitals. Several organizations rely on workers to complete incident reports electronically while others assign managers or security personnel to data collection. Some hospitals appear to report only those incidents involving physical harm to the worker. Regulatory guidance for reporting practices and hospitals' commitment to thorough data collection may improve consistency. As hospitals throughout the U.S. consider practice changes to comply with new WV standards, those engaged in implementation efforts should look closely at reporting practices. Greater consistency in reporting across facilities can help to build evidence for best practices and lead to safety improvements.


Asunto(s)
Violencia Laboral , Personal de Salud , Hospitales , Humanos , Gestión de Riesgos , Lugar de Trabajo
11.
Genet Med ; 23(9): 1681-1688, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-33958748

RESUMEN

PURPOSE: Germline testing laboratories have evolved over several decades. We describe laboratory business models and practices and explore their implications on germline testing availability and access. METHODS: We conducted semistructured interviews with key informants using purposive sampling. We interviewed 13 key informants representing 14 laboratories. We used triangulation and iterative data analysis to identify topics concerning laboratory business models and practices. RESULTS: We characterized laboratories as full-service (FSL), for-profit germline (PGL), and not-for-profit germline (NGL). Relying on existing payer contracts is a key characteristic of the FSL business models. FSLs focus on high-volume germline tests with evidence of clinical utility that have reimbursable codes. In comparison, a key business model characteristic of PGLs is direct patient billing facilitated by commodity-based pricing made possible by investors and industry partnerships. Client billing is a key business model characteristic of NGLs. Because many NGLs exist within academic settings, they are challenged by their inability to optimize laboratory processes and billing practices. CONCLUSION: Continued availability of, and access to germline testing will depend on the financial success of laboratories; organizational characteristics of laboratories and payers; cultural factors, particularly consumer interest and trust; and societal factors, such as regulation and laws surrounding pricing and reimbursement.


Asunto(s)
Pruebas Genéticas , Laboratorios , Células Germinativas , Humanos
12.
J Gen Intern Med ; 35(4): 1135-1142, 2020 04.
Artículo en Inglés | MEDLINE | ID: mdl-32076987

RESUMEN

BACKGROUND: There have been no large-scale studies to date of patients' experiences with electronic consultation (eConsult) between primary and specialty care. OBJECTIVE: Compare experiences with eConsult and referral for in-person specialist consultation. DESIGN: Online survey 2-6 weeks following eConsult or referral at 9 US academic medical centers. PARTICIPANTS: Adult patients with no more than one eConsult or referral order from a primary care provider (PCP) in the prior month. Over 9 months, 29,291 email invitations were sent (88% referral; 12% eConsult). MAIN MEASURES: Trust in and satisfaction with PCP; consult type awareness; agreement with decision to seek specialist input; timeliness of care; mode of PCP-patient eConsult communication; satisfaction with specialist's recommendations; future preference for eConsult or referral. KEY RESULTS: A 27.6% response rate yielded 8087 respondents (88.4% referral; 11.6% eConsult). Many did not know that their PCP had placed a referral (32.8% unaware) or eConsult (52.9%), and eConsult awareness was significantly higher among patients reporting better health (OR 1.62, 95% CI 1.18-2.23). Most (81.4% eConsult; 82.0% referral) were satisfied with the specialist's recommendations. Those who had a good primary care experience were more likely to be satisfied (eConsult: OR 10.63, 95% CI 2.95-38.32; referral: OR 2.87, 95% CI 1.86-4.44). For a similar problem in the future, 78% of eConsult and 32% percent of referral patients preferred eConsult. CONCLUSIONS: This multisite study demonstrates that many patients find virtual consultation to be an acceptable strategy for the management of their medical condition and that trust and confidence in one's PCP are crucial ingredients for a satisfying eConsult experience. The lack of awareness of eConsult among many patients who were beneficiaries of the service warrants an increased effort to include patients in eConsult decision-making and communication. Further research is needed to assess eConsult acceptability and satisfaction in more diverse patient populations.


Asunto(s)
Derivación y Consulta , Consulta Remota , Centros Médicos Académicos , Adulto , Electrónica , Accesibilidad a los Servicios de Salud , Humanos , Atención Primaria de Salud , Encuestas y Cuestionarios
13.
Ann Fam Med ; 18(1): 35-41, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31937531

RESUMEN

PURPOSE: Electronic consultation (eConsult), involving asynchronous primary care clinician-to-specialist consultation, is being adopted at a growing number of health systems. Most evaluations of eConsult programs have assessed clinical and financial impacts and clinician acceptability. Less attention has been focused on patients' opinions. We set out to understand patient perspectives and preferences for hypothetical eConsult use at 5 US academic medical centers in the process of adopting an eConsult model. METHODS: We invited adult primary care patients to participate in focus groups. Participants were introduced to the eConsult model, considered its potential benefits and drawbacks, judged the acceptability of a hypothetical copay, and expressed their preferences for future involvement in eConsult decision making and communication. Thematic analysis was used for data interpretation. RESULTS: One focus group was conducted at each of the 5 sites with a total of 52 participants. Focus groups responded positively to the idea of eConsult, with quicker access to specialty care and convenience identified as key benefits. Approval was particularly high among those with a trusted primary care clinician. Preference for involvement in eConsult decision making and communication varied and enthusiasm about eConsult waned when a hypothetical copay was introduced. Concerns included potential misuse of eConsult and exclusion of the patient's illness narrative in the eConsult exchange. CONCLUSIONS: Primary care patients expressed strong support for eConsult, particularly when used by a trusted primary care clinician, in addition to voicing several concerns. Patient involvement in eConsult outreach and education efforts could help to enhance the model's effectiveness and acceptability.


Asunto(s)
Prioridad del Paciente , Atención Primaria de Salud/organización & administración , Consulta Remota/métodos , Centros Médicos Académicos , Adolescente , Adulto , Anciano , Toma de Decisiones , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Consulta Remota/economía , Adulto Joven
14.
J Gen Intern Med ; 34(8): 1427-1433, 2019 08.
Artículo en Inglés | MEDLINE | ID: mdl-31197734

RESUMEN

BACKGROUND: Electronic consultation (eConsult), which involves primary care provider (PCP)-to-specialist asynchronous consultation, is increasingly used in health care systems to streamline care and to improve patient access. The Association of American Medical Colleges (AAMC) formed a collaborative to support the implementation of an electronic medical record (EMR)-based, opt-in eConsult program across multiple academic medical centers (AMCs). In this model, PCPs can elect to send either an eConsult or a traditional referral. OBJECTIVE: We sought to understand the PCP experience with eConsult to identify facilitators of and barriers to the successful adoption of the model. DESIGN AND PARTICIPANTS: We conducted 35 semi-structured interviews and 6 focus groups with a range of primary care providers at 7 AMCs participating in the AAMC collaborative. APPROACH: Interviews were recorded and transcribed or detailed field notes were taken. We used the constant comparative method to identify recurring themes within and across sites, and resolve interpretive discrepancies. KEY RESULTS: We identified three major themes related to the eConsult program: (1) eConsult increases the comprehensiveness of primary care and fills PCPs' knowledge gaps through case-based learning. (2) Factors that influence PCPs to order an eConsult rather than a traditional referral include patient preference, case complexity, and need for expert guidance. (3) Implementation challenges included increasing PCPs' awareness of the program, addressing PCPs' concerns about increased workload, recruiting engaged specialist consultants, and ensuring high quality eConsult responses. Implementation success relied on PCP ownership of the consultation process, mitigating unintended consequences, ongoing education about the program, and mechanisms for providing feedback to clinicians. CONCLUSIONS: Our findings demonstrate that an opt-in eConsult program at AMCs has the potential to increase PCP knowledge and enhance the comprehensiveness of primary care. For these benefits to be realized, program implementation requires sustained efforts to overcome barriers to use and establish norms guiding eConsult communication.


Asunto(s)
Centros Médicos Académicos/normas , Estudios de Evaluación como Asunto , Personal de Salud/normas , Atención Primaria de Salud/normas , Derivación y Consulta/normas , Telemedicina/normas , Centros Médicos Académicos/métodos , Femenino , Personal de Salud/psicología , Humanos , Masculino , Atención Primaria de Salud/métodos , Telemedicina/métodos
15.
BMC Med Inform Decis Mak ; 16: 16, 2016 Feb 06.
Artículo en Inglés | MEDLINE | ID: mdl-26851941

RESUMEN

BACKGROUND: Text messaging is an affordable, ubiquitous, and expanding mobile communication technology. However, safety net health systems in the United States that provide more care to uninsured and low-income patients may face additional financial and infrastructural challenges in utilizing this technology. Formative evaluations of texting implementation experiences are limited. We interviewed safety net health systems piloting texting initiatives to study facilitators and barriers to real-world implementation. METHODS: We conducted telephone interviews with various stakeholders who volunteered from each of the eight California-based safety net systems that received external funding to pilot a texting-based program of their choosing to serve a primary care need. We developed a semi-structured interview guide based partly on the Consolidated Framework for Implementation Research (CFIR), which encompasses several domains: the intervention, individuals involved, contextual factors, and implementation process. We inductively and deductively (using CFIR) coded transcripts, and categorized themes into facilitators and barriers. RESULTS: We performed eight interviews (one interview per pilot site). Five sites had no prior texting experience. Sites applied texting for programs related to medication adherence and monitoring, appointment reminders, care coordination, and health education and promotion. No site texted patient-identifying health information, and most sites manually obtained informed consent from each participating patient. Facilitators of implementation included perceived enthusiasm from patients, staff and management belief that texting is patient-centered, and the early identification of potential barriers through peer collaboration among grantees. Navigating government regulations that protect patient privacy and guide the handling of protected health information emerged as a crucial barrier. A related technical challenge in five sites was the labor-intensive tracking and documenting of texting communications due to an inability to integrate texting platforms with electronic health records. CONCLUSIONS: Despite enthusiasm for the texting programs from the involved individuals and organizations, inadequate data management capabilities and unclear privacy and security regulations for mobile health technology slowed the initial implementation and limited the clinical use of texting in the safety net and scope of pilots. Future implementation work and research should investigate how different texting platform and intervention designs affect efficacy, as well as explore issues that may affect sustainability and the scalability.


Asunto(s)
Atención Primaria de Salud/estadística & datos numéricos , Proveedores de Redes de Seguridad/estadística & datos numéricos , Telemedicina/estadística & datos numéricos , Envío de Mensajes de Texto/estadística & datos numéricos , California , Humanos , Investigación Cualitativa
16.
Teach Learn Med ; 28(2): 183-91, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-27064720

RESUMEN

PROBLEM: Systems-based practice focuses on the organization, financing, and delivery of medical services. The American Association of Medical Colleges has recommended that systems-based practice be incorporated into medical schools' curricula. However, experiential learning in systems-based practice, including practical strategies to improve the quality and efficiency of clinical care, is often absent from or inconsistently included in medical education. INTERVENTION: A multidisciplinary clinician and nonclinician faculty team partnered with a cardiology outpatient clinic to design a 9-month clerkship for 1st-year medical students focused on systems-based practice, delivery of clinical care, and strategies to improve the quality and efficiency of clinical operations. The clerkship was called the Action Research Program. In 2013-2014, 8 trainees participated in educational seminars, research activities, and 9-week clinic rotations. A qualitative process and outcome evaluation drew on interviews with students, clinic staff, and supervising physicians, as well as students' detailed field notes. CONTEXT: The Action Research Program was developed and implemented at the University of California, San Francisco, an academic medical center in the United States. All educational activities took place at the university's medical school and at the medical center's cardiology outpatient clinic. OUTCOME: Students reported and demonstrated increased understanding of how care delivery systems work, improved clinical skills, growing confidence in interactions with patients, and appreciation for patients' experiences. Clinicians reported increased efficiency at the clinic level and improved performance and job satisfaction among medical assistants as a result of their unprecedented mentoring role with students. Some clinicians felt burdened when students shadowed them and asked questions during interactions with patients. Most student-led improvement projects were not fully implemented. LESSONS LEARNED: The Action Research Program is a small pilot project that demonstrates an innovative pairing of experiential and didactic training in systems-based practice. Lessons learned include the need for dedicated time and faculty support for students' improvement projects, which were the least successful aspect of the program. We recommend that future projects aiming to combine clinical training and quality improvement projects designate distinct blocks of time for trainees to pursue each of these activities independently. In 2014-2015, the University of California, San Francisco School of Medicine incorporated key features of the Action Research Program into the standard curriculum, with plans to build upon this foundation in future curricular innovations.


Asunto(s)
Cardiología/educación , Prácticas Clínicas , Educación de Pregrado en Medicina/tendencias , Aprendizaje Basado en Problemas , Curriculum , Femenino , Humanos , Entrevistas como Asunto , Masculino , Mentores , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud , Mejoramiento de la Calidad , Estados Unidos
17.
Sci Technol Human Values ; 41(2): 194-218, 2016 Mar 01.
Artículo en Inglés | MEDLINE | ID: mdl-34456398

RESUMEN

Scientists now agree that common diseases arise through interactions of genetic and environmental factors, but there is less agreement about how scientific research should account for these interactions. This paper examines the politics of quantification in gene-environment interaction (GEI) research. Drawing on interviews and observations with GEI researchers who study common, complex diseases, we describe quantification as an unfolding moral economy of science, in which researchers collectively enact competing ''virtues.'' Dominant virtues include molecular precision, in which behavioral and social risk factors are moved into the body, and ''harmonization,'' in which scientists create large data sets and common interests in multisited consortia. We describe the negotiations and trade-offs scientists enact in order to produce credible knowledge and the forms of (self-)discipline that shape researchers, their practices, and objects of study. We describe how prevailing techniques of quantification are premised on the shrinking of the environment in the interest of producing harmonized data and harmonious scientists, leading some scientists to argue that social, economic, and political influences on disease patterns are sidelined in postgenomic research. We consider how a variety of GEI researchers navigate quantification's productive and limiting effects on the science of etiological complexity.

18.
BMC Health Serv Res ; 15: 10, 2015 Jan 22.
Artículo en Inglés | MEDLINE | ID: mdl-25609495

RESUMEN

BACKGROUND: Studies of the quality of tuberculosis (TB) diagnostic evaluation of patients in high burden countries have generally shown poor adherence to international or national guidelines. Health worker perspectives on barriers to improving TB diagnostic evaluation are critical for developing clinic-level interventions to improve guideline implementation. METHODS: We conducted structured, in-depth interviews with staff at six district-level health centers in Uganda to elicit their perceptions regarding barriers to TB evaluation. Interviews were transcribed, coded with a standardized framework, and analyzed to identify emergent themes. We used thematic analysis to develop a logic model depicting health system and contextual barriers to recommended TB evaluation practices. To identify possible clinic-level interventions to improve TB evaluation, we categorized findings into predisposing, enabling, and reinforcing factors as described by the PRECEDE model, focusing on potentially modifiable behaviors at the clinic-level. RESULTS: We interviewed 22 health center staff between February 2010 and November 2011. Participants identified key health system barriers hindering TB evaluation, including: stock-outs of drugs/supplies, inadequate space and infrastructure, lack of training, high workload, low staff motivation, and poor coordination of health center services. Contextual barrier challenges to TB evaluation were also reported, including the time and costs borne by patients to seek and complete TB evaluation, poor health literacy, and stigma against patients with TB. These contextual barriers interacted with health system barriers to contribute to sub-standard TB evaluation. Examples of intervention strategies that could address these barriers and are related to PRECEDE model components include: assigned mentors/peer coaching for new staff (targets predisposing factor of low motivation and need for support to conduct job duties); facilitated workshops to implement same day microscopy (targets enabling factor of patient barriers to completing TB evaluation), and recognition/incentives for good TB screening practices (targets low motivation and self-efficacy). CONCLUSIONS: Our findings suggest that health system and contextual barriers work together to impede TB diagnosis at health centers and, if not addressed, could hinder TB case detection efforts. Qualitative research that improves understanding of the barriers facing TB providers is critical to developing targeted interventions to improve TB care.


Asunto(s)
Actitud del Personal de Salud , Atención a la Salud , Tuberculosis/diagnóstico , Atención Ambulatoria/normas , Instituciones de Atención Ambulatoria/economía , Instituciones de Atención Ambulatoria/normas , Instituciones de Atención Ambulatoria/provisión & distribución , Antituberculosos/provisión & distribución , Costos y Análisis de Costo , Femenino , Personal de Salud/educación , Personal de Salud/normas , Estado de Salud , Humanos , Tamizaje Masivo/economía , Tamizaje Masivo/organización & administración , Tamizaje Masivo/normas , Habitaciones de Pacientes/provisión & distribución , Opinión Pública , Investigación Cualitativa , Estigma Social , Tuberculosis/economía , Uganda
19.
Aging Ment Health ; 19(4): 353-62, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25022459

RESUMEN

OBJECTIVES: Preventing Loss of Independence through Exercise (PLIÉ) is a novel, integrative exercise program for individuals with dementia that combines elements of different conventional and complementary exercise modalities (e.g. tai-chi, yoga, Feldenkrais, and dance movement therapy) and focuses on training procedural memory for basic functional movements (e.g., sit-to-stand) while increasing mindful body awareness and facilitating social connection. This study presents analyses of qualitative data collected during a 36-week cross-over pilot clinical trial in 11 individuals. METHODS: Qualitative data included exercise instructors' written notes, which were prepared after each class and also following biweekly telephone calls with caregivers and monthly home visits; three video-recorded classes; and written summaries prepared by research assistants following pre- and post-intervention quantitative assessments. Data were extracted for each study participant and placed onto a timeline for month of observation. Data were coded and analyzed to identify themes that were confirmed and refined through an iterative, collaborative process by the entire team including a qualitative researcher (SA) and the exercise instructors. RESULTS: Three overarching themes emerged: (1) Functional changes included increasing body awareness, movement memory and functional skill. (2) Emotional changes included greater acceptance of resting, sharing of personal stories and feelings, and positive attitude toward exercise. (3) Social changes included more coherent social interactions and making friends. CONCLUSIONS: These qualitative results suggest that the PLIÉ program may be associated with beneficial functional, emotional, and social changes for individuals with mild to moderate dementia. Further study of the PLIÉ program in individuals with dementia is warranted.


Asunto(s)
Demencia/terapia , Terapia por Ejercicio/psicología , Ejercicio Físico/psicología , Terapias Mente-Cuerpo/psicología , Anciano , Anciano de 80 o más Años , Ensayos Clínicos como Asunto , Emociones , Terapia por Ejercicio/métodos , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Relaciones Interpersonales , Masculino , Memoria , Terapias Mente-Cuerpo/métodos , Investigación Cualitativa , San Francisco
20.
J Gen Intern Med ; 29(10): 1355-61, 2014 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-24934146

RESUMEN

BACKGROUND: Subspecialty ambulatory care visits have doubled in the past 10 years and nearly half of all visits are for follow-up care. Could some of this care be provided by primary care providers (PCPs)? OBJECTIVE: To determine how often PCPs and specialists agree that a mutual patient's condition could be managed exclusively by the PCP, and to understand PCPs' perspectives on factors that influence decisions about 'repatriation,' or the transfer of patient management to primary care. DESIGN: A mixed method approach including paired surveys of PCPs and specialists about the necessity for ongoing specialty care of mutual patients, and interviews with PCPs about care coordination practices and reasons for differing opinions with specialists. PARTICIPANTS: One hundred and eighty-nine PCPs and 59 physicians representing five medicine subspecialties completed paired surveys for 343 patients. Semi-structured interviews were conducted with 16 PCPs. MEASUREMENTS: For each patient, PCPs and specialists were asked, "Could this diagnosis be managed exclusively by the PCP?" RESULTS: Specialists and PCPs agreed that transfer to primary care was appropriate for 16% of patients, whereas 36% had specialists and PCPs who agreed that ongoing specialty care was appropriate. Specialists were half as likely as PCPs to identify patients as appropriate for transfer to primary care. PCPs identified several factors that influence the likelihood that patients will be transferred to primary care, including perceived patient preferences, limited access to physician appointments, excessive workload, inter-clinician communication norms, and differences in clinical judgment. We group these factors into two domains: 'push-back' and 'pull-back' to primary care. CONCLUSIONS: At a large academic medical center, approximately one in six patients receiving ongoing specialty care could potentially be managed exclusively by a PCP. PCPs identified several non-clinical factors to explain continuation of specialty care when patient transfer to PCP is clinically appropriate.


Asunto(s)
Actitud del Personal de Salud , Manejo de la Enfermedad , Transferencia de Pacientes/tendencias , Médicos de Atención Primaria/tendencias , Derivación y Consulta , Especialización/tendencias , Anciano , Recolección de Datos/métodos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Transferencia de Pacientes/métodos
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