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1.
Health Expect ; 27(4): e14138, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38982761

RESUMEN

INTRODUCTION: Co-design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co-design is undertaken in-person; however, exploring online delivery is warranted. PPIE in co-design must be considered carefully, and assumptions that in-person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence-informed approaches to facilitating co-design online. This study aimed to develop and evaluate a framework for authentically adapting health research co-design into an online environment. MATERIALS AND METHODS: The initial framework was developed through a literature review, synthesis of in-person co-design principles, and alignment of online strategies. The framework was then applied to a co-design project with 10 participants across relevant PPIE groups (end-users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician-researchers [n = 2]). Participants' experiences of the online co-design process were evaluated via a mixed-methods design using surveys and semi-structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. RESULTS: The developed framework, Partnership-focussed Principles-driven Online co-Design (P-POD) was used to design eight 90 min online co-design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P-POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P-POD framework is presented. CONCLUSION: With evaluation of the initial P-POD framework showing evidence of adherence to co-design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P-POD framework may be used and evaluated within future intervention or service design. PATIENT OR PUBLIC CONTRIBUTION: This study involved the participants (end-users, clinicians and service providers) in the co-design process described, interpretation of the results through member-checking interview responses, assisting in development of the final framework and as co-authors for this manuscript.


Asunto(s)
Internet , Participación del Paciente , Humanos , Participación del Paciente/métodos , Participación de la Comunidad/métodos , Encuestas y Cuestionarios , Entrevistas como Asunto , Proyectos de Investigación , Investigación sobre Servicios de Salud
2.
Rev Med Suisse ; 20(880): 1264-1270, 2024 Jun 26.
Artículo en Francés | MEDLINE | ID: mdl-38938137

RESUMEN

In recent years, the relationship between patients and healthcare professionals, and more broadly between public health actors and citizens, has shifted from a paternalistic, top-down approach to one of increased patient involvement in decision-making. Primary and secondary cancer prevention involve both benefits and risks, underscoring the importance of informed decision-making aligned with each patient and citizen's unique values and preferences. Shared decision-making, supported by decision aids, offers patients and citizens clear and comprehensible information about their options, enabling informed choices. This article aims to compile and define the characteristics of tools developed or translated into French for this purpose.


Depuis plusieurs années, la relation entre les patients et les professionnels de la santé et plus largement entre les acteurs de la santé publique et les citoyens a évolué, passant d'une approche paternaliste et top-down à une implication accrue des patients dans les décisions les concernant. La prévention primaire et secondaire des cancers présente des bénéfices mais parfois également des risques, nécessitant une décision alignée avec les valeurs et les préférences des patients et des citoyens. La prise de décision partagée, via des outils d'aide à la décision, offre aux patients des informations claires et faciles à comprendre à propos des options qui leur sont offertes, afin de prendre une décision éclairée. Cet article vise à recenser les outils créés ou traduits en français et à en définir les caractéristiques.


Asunto(s)
Técnicas de Apoyo para la Decisión , Neoplasias , Participación del Paciente , Humanos , Neoplasias/prevención & control , Participación del Paciente/métodos , Francia/epidemiología , Toma de Decisiones , Toma de Decisiones Conjunta , Lenguaje
3.
J Med Internet Res ; 26: e49394, 2024 Jun 27.
Artículo en Inglés | MEDLINE | ID: mdl-38935963

RESUMEN

The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient's identity credentials-a "do-it-yourself" solution in conflict with a health systems' legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved-patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.


Asunto(s)
Portales del Paciente , Humanos , Registros Electrónicos de Salud , Cuidadores , Participación del Paciente/métodos
4.
Support Care Cancer ; 32(7): 449, 2024 Jun 21.
Artículo en Inglés | MEDLINE | ID: mdl-38904864

RESUMEN

PURPOSE: Patients on oral anticancer agent (OAA) therapies have the autonomy to manage their cancer treatments in home settings. However, patients may not have adequate knowledge, confidence, or ability to effectively manage OAA-related consequences, which can significantly impact their treatment and health outcomes. This study aims to identify the associations between medication beliefs, patient activation, and self-rated health (SRH) among oncology patients taking OAAs and explore the potential mediation effects of patient activation on the relationship between medication beliefs and SRH. METHODS: A secondary data analysis was conducted on cross-sectional data from 114 patients who were diagnosed with breast, colorectal, lung, or prostate cancer. Patients completed a self-reported survey including items of SRH, Beliefs about Medicines Questionnaire (BMQ), and Patient Activation Measure (PAM-13). Descriptive statistics, bivariate correlation, hierarchical multiple linear regression, and mediation analysis were conducted. RESULTS: The results indicate that patients taking OAAs have ambivalent attitudes toward medication. Both medication necessity (r = - 0.27) and concerns (r = - 0.21) were negatively associated with SRH, while patient activation was positively associated with SRH (r = 0.38). Patient activation had a negative association with medication concerns (r = - 0.36) and fully mediated the relationship between medication concerns and SRH in patients taking OAAs (indirect effect = - 0.154, 95% confidence interval, - 0.276 to - 0.060). CONCLUSION: The findings highlight the significance of activating patients to better understand and manage their OAAs. It is crucial for oncology professionals to provide multifaceted interventions to promote patient activation with an effort to mitigate the negative impact of medication beliefs on patient-perceived health outcomes.


Asunto(s)
Antineoplásicos , Conocimientos, Actitudes y Práctica en Salud , Neoplasias , Participación del Paciente , Humanos , Masculino , Femenino , Estudios Transversales , Persona de Mediana Edad , Antineoplásicos/efectos adversos , Antineoplásicos/administración & dosificación , Anciano , Neoplasias/tratamiento farmacológico , Neoplasias/psicología , Encuestas y Cuestionarios , Administración Oral , Participación del Paciente/psicología , Participación del Paciente/métodos , Autoinforme , Adulto , Anciano de 80 o más Años
5.
Healthc Q ; 27(1): 42-50, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38881484

RESUMEN

The Bridge-to-Home program was launched as a 16-month collaborative from 2018 to 2020 to improve care transitions out of hospital using a patient engagement-focused quality improvement (QI) initiative. Teams that participated in the collaborative were able to implement elements of the patient-oriented care transitions bundle, improve experience of care transitions and increase capacity for patient engagement for both patient partners and providers. In this article, we highlight three case studies of teams in different types of organizations with different levels of patient engagement maturation. Key enablers and barriers are identified with a specific lens on engagement efforts to co-produce changes in the processes and experience of care. These cases illustrate that providing support for patient engagement when leading a QI initiative is mutually reinforcing, where patient engagement and QI support and strengthen each other, resulting in increased success of the quality initiative and increased capacity for patient engagement.


Asunto(s)
Participación del Paciente , Mejoramiento de la Calidad , Humanos , Participación del Paciente/métodos , Estudios de Casos Organizacionales , Alta del Paciente , Cuidado de Transición , Servicios de Atención de Salud a Domicilio/organización & administración , Conducta Cooperativa
6.
Healthc Q ; 27(1): 51-55, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38881485

RESUMEN

We reflect on the paper from Hahn-Goldberg et al. (2024) who shared key learnings from a pan-Canadian quality improvement (QI) and patient engagement care transition initiative called Bridge-to-Home. In considering the approach and outcomes presented in their paper, we have generated reflections and practical suggestions on how to amplify engagement work even further: (1) patient engagement and QI are about relationships; (2) seamlessly implementing complex interventions across siloed organizations continues to be a challenge, which engagement alone cannot solve; (3) it is time for a paradigm shift; (4) QI is about human behaviour change and is inherently messy; and (5) embedding fulsome evaluation of engagement is essential.


Asunto(s)
Participación del Paciente , Mejoramiento de la Calidad , Humanos , Mejoramiento de la Calidad/organización & administración , Canadá , Participación del Paciente/métodos
7.
Can Med Educ J ; 15(2): 78-82, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38827901

RESUMEN

Patient and family-centered care and patient engagement practices have strong evidence-based links with quality and safety for both patients and health care providers. Expectations for patient and family-centered care have advanced beyond hearing the patient perspective and taking patient wishes into account. A participatory approach including patients as partners in their care journey is expected, but attitudes toward patient and family-centered care remain barriers in practice. As health service organizations shift from a system-centered approach to a patient and family-centered care delivery model, black ice occurs. In this Black Ice article, we present some practical tips for medical educators to improve opportunities for medical students to develop knowledge, attitudes, and skills that support patient and family-centered care.


Le lien entre les soins axés sur le patient et la famille et l'engagement des patients d'un côté et la qualité et la sécurité des soins, tant pour les patients que pour les prestataires de services, de l'autre, a été solidement démontré. Les attentes en matière de soins axés sur le patient et la famille ont évolué et elles ne se limitent plus à recueillir le point de vue du patient et à prendre en considération ses souhaits. On préconise désormais une approche participative faisant intervenir les patients en tant que partenaires dans leur cheminement clinique. Toutefois, certaines attitudes à l'égard des soins axés sur le patient et la famille freinent la mise en pratique d'une telle démarche. Dans les organismes de services de santé, le passage d'une approche centrée sur le système à un modèle de prestation de soins axé sur le patient et la famille constitue un terrain glissant. Nous proposons ici quelques stratégies pratiques pour aider les enseignants en médecine à faciliter l'acquisition par les étudiants des connaissances, des attitudes et des habiletés qui favorisent les soins centrés sur le patient et la famille.


Asunto(s)
Educación de Pregrado en Medicina , Atención Dirigida al Paciente , Humanos , Educación de Pregrado en Medicina/métodos , Participación del Paciente/métodos , Estudiantes de Medicina
8.
Semin Arthritis Rheum ; 67: 152447, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38723409

RESUMEN

OBJECTIVES: This paper describes the evolution and impact of Patient Research Partners (PRPs) in shaping research within OMERACT and provides a framework to enhance their engagement. This session explored one component of a validated framework to evaluate meaningful patient engagement. It provides insights, identifies opportunities for improvement, and recommends using the Patient Engagement in Research (PEIR) Framework, PEIR Plan Guide (workbook), and PEIRS-22 (scale) to guide and measure PRPs' engagement. METHODS: Before the conference, the team held planning sessions and selected the Feel-Valued component of the PEIR Workbook for exploration. During OMERACT 2023, we discussed this topic using the PEIR Plan Guide in an interactive plenary session. RESULTS: The plenary session produced 72 items from 14 breakout tables addressing PEIR Framework themes. CONCLUSIONS: This paper highlights the role and evolution of PRPs in shaping research within OMERACT. It emphasizes enhancing and accurately measuring PRP engagement through the PEIR Framework, PEIR Plan Guide, and PEIRS-22. The insights and methodologies presented aim to fortify future PRP engagement, ensuring it aligns with OMERACT's principles of patient-centred research.


Asunto(s)
Participación del Paciente , Humanos , Participación del Paciente/métodos , Investigación Biomédica/métodos
9.
BMC Med Res Methodol ; 24(1): 103, 2024 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-38698315

RESUMEN

BACKGROUND: Use of participatory research methods is increasing in research trials. Once partnerships are established with end-users, there is less guidance about processes research teams can use to successfully incorporate end-user feedback. The current study describes the use of a brief reflections process to systematically examine and evaluate the impact of end-user feedback on study conduct. METHODS: The Comparative Effectiveness of Trauma-Focused and Non-Trauma- Focused Treatment Strategies for PTSD among those with Co-Occurring SUD (COMPASS) study was a randomized controlled trial to determine the effectiveness of trauma-focused psychotherapy versus non-trauma-focused psychotherapy for Veterans with co-occurring posttraumatic stress disorder and substance use disorder who were entering substance use treatment within the Department of Veterans Affairs. We developed and paired a process of "brief reflections" with our end-user engagement methods as part of a supplemental evaluation of the COMPASS study engagement plan. Brief reflections were 30-minute semi-structured discussions with the COMPASS Team following meetings with three study engagement panels about feedback received regarding study issues. To evaluate the impact of panel feedback, 16 reflections were audio-recorded, transcribed, rapidly analyzed, and integrated with other study data sources. RESULTS: Brief reflections revealed that the engagement panels made recommended changes in eight areas: enhancing recruitment; study assessment completion; creating uniformity across Study Coordinators; building Study Coordinator connection to Veteran participants; mismatch between study procedures and clinical practice; therapist skill with patients with active substance use; therapist burnout; and dissemination of study findings. Some recommendations positively impact study conduct while others had mixed impact. Reflections were iterative and led to emergent processes that included revisiting previously discussed topics, cross-pollination of ideas across panels, and sparking solutions amongst the Team when the panels did not make any recommendations or recommendations were not feasible. CONCLUSIONS: When paired with end-user engagement methods, brief reflections can facilitate systematic examination of end-user input, particularly when the engagement strategy is robust. Reflections offer a forum of accountability for researchers to give careful thought to end-user recommendations and make timely improvements to the study conduct. Reflections can also facilitate evaluation of these recommendations and reveal end-user-driven strategies that can effectively improve study conduct. TRIAL REGISTRATION: ClinicalTrials.gov (NCT04581434) on October 9, 2020; https://clinicaltrials.gov/ct2/show/study/NCT04581434?term=NCT04581434&draw=2&rank=1 .


Asunto(s)
Trastornos por Estrés Postraumático , Trastornos Relacionados con Sustancias , Veteranos , Humanos , Trastornos por Estrés Postraumático/terapia , Trastornos por Estrés Postraumático/psicología , Trastornos Relacionados con Sustancias/terapia , Trastornos Relacionados con Sustancias/psicología , Veteranos/psicología , Veteranos/estadística & datos numéricos , United States Department of Veterans Affairs/estadística & datos numéricos , Psicoterapia/métodos , Estados Unidos , Participación del Paciente/métodos , Participación del Paciente/estadística & datos numéricos , Participación del Paciente/psicología , Proyectos de Investigación
10.
Rev Infirm ; 73(301): 41-44, 2024 May.
Artículo en Francés | MEDLINE | ID: mdl-38796245

RESUMEN

Introducing patient partnership in mental health and psychiatry to initial training is an innovative way of promoting recovery, while at the same time highlighting the undeniable contribution of peer support within healthcare teams, in order to accompany the people concerned. This is why Croix-Rouge Compétence Auvergne-Rhône-Alpes is developing a specific training program for trainees.


Asunto(s)
Psiquiatría , Humanos , Psiquiatría/educación , Psiquiatría/organización & administración , Trastornos Mentales , Salud Mental , Participación del Paciente/métodos , Francia , Enfermería Psiquiátrica/educación
11.
Soc Sci Med ; 350: 116946, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38728978

RESUMEN

Interactions in the healthcare system today involve an important new set of actors: evaluative health platforms (EHPs). These platforms are not neutral intermediaries, but active moderators of how patients express opinions, choose providers, and consume health-related information. This paper adds to our understanding of the varied and evolving commercial interests of EHPs and the implications these have for patient voice. We analyze 71 platforms in the USA, UK, and Germany and identify five ideal types: subscribers, analyzers, advertisers, regulators, and scammers. Each platform type enacts a unique competitive strategy through an evaluative infrastructure which constrains but also generates possibilities for patient voice. Based on our typology, we develop three contributions. First, we nuance universalizing claims about the consequences of platform capitalism by specifying the diverse strategies underpinning competition between EHPs in different countries, and showing how each strategy leads evaluative infrastructures to develop in ways that impact patient voice. Second, we show how patients can navigate the challenges of a complex EHP space by exercising their ability to choose between platforms. Finally, we outline the conditions platforms need to fulfil to become empowering. Overall, this study highlights the varied and complex relationship between platform business models and user voice, which exists not only in healthcare, but also in many other fields.


Asunto(s)
Participación del Paciente , Humanos , Estados Unidos , Alemania , Reino Unido , Participación del Paciente/métodos
13.
Support Care Cancer ; 32(6): 396, 2024 May 31.
Artículo en Inglés | MEDLINE | ID: mdl-38816629

RESUMEN

PURPOSE: To identify and synthesise interactive digital tools used to support the empowerment of people with cancer and the outcomes of these tools. METHODS: A systematic literature review was conducted using PubMed, CINAHL, Web of Science, Cochrane, Eric, Scopus, and PsycINFO databases in May 2023. Inclusion criteria were patient empowerment as an outcome supported by interactive digital tools expressed in study goal, methods or results, peer-reviewed studies published since 2010 in cancer care. Narrative synthesis was applied, and the quality of the studies was assessed following Joanna Briggs Institute checklists. RESULTS: Out of 1571 records screened, 39 studies published in 2011-2022 with RCT (17), single-arm trial (15), quasi-experimental (1), and qualitative designs (6) were included. A total of 30 interactive digital tools were identified to support empowerment (4) and related aspects, such as self-management (2), coping (4), patient activation (9), and self-efficacy (19). Significant positive effects were found on empowerment (1), self-management (1), coping (1), patient activation (2), and self-efficacy (10). Patient experiences were positive. Interactivity occurred with the tool itself (22), peers (7), or nurses (7), physicians (2), psychologists, (2) or social workers (1). CONCLUSION: Interactive digital tools have been developed extensively in recent years, varying in terms of content and methodology, favouring feasibility and pilot designs. In all of the tools, people with cancer are either active or recipients of information. The research evidence indicates positive outcomes for patient empowerment through interactive digital tools. Thus, even though promising, there still is need for further testing of the tools.


Asunto(s)
Empoderamiento , Neoplasias , Humanos , Neoplasias/psicología , Neoplasias/terapia , Autoeficacia , Adaptación Psicológica , Participación del Paciente/métodos , Participación del Paciente/psicología , Automanejo/métodos
14.
Support Care Cancer ; 32(6): 352, 2024 May 15.
Artículo en Inglés | MEDLINE | ID: mdl-38748294

RESUMEN

PURPOSE: Oncology patients often struggle to manage their medications and related adverse events during transitions of care. They are expected to take an active role in self-monitoring and timely reporting of their medication safety events or concerns to clinicians. The purpose of this study was to explore the factors influencing oncology patients' willingness to report adverse events or concerns related to their medication after their transitions back home. METHODS: A qualitative interview study was conducted with adult patients with breast, prostate, lung, or colorectal cancer who experienced care transitions within the previous year. A semi-structured interview guide was developed to understand patients' perceptions of reporting mediation-related safety events or concerns from home. All interviews were conducted via phone calls, recorded, and transcribed for thematic data analysis. RESULTS: A total of 41 individuals participated in the interviews. Three main themes and six subthemes emerged, including patients' perceived relationship with clinicians (the quality of communication and trust in clinicians), perceived severity of adverse medication events (perceived severe vs. non-severe events), and patient activation in self-management (self-efficacy in self-management and engagement in monitoring health outcomes). CONCLUSION: The patient-clinician relationship significantly affects patients' reporting behaviors, which can potentially interact with other factors, including the severity of adverse events. It is important to engage oncology patients in medication safety self-reporting from home by enhancing health communication, understanding patients' perceptions of severe events, and promoting patient activation. By addressing these efforts, healthcare providers should adopt a more patient-centered approach to enhance the overall quality and safety of oncological care.


Asunto(s)
Neoplasias , Investigación Cualitativa , Humanos , Femenino , Masculino , Persona de Mediana Edad , Anciano , Neoplasias/tratamiento farmacológico , Neoplasias/psicología , Adulto , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/psicología , Relaciones Médico-Paciente , Entrevistas como Asunto , Comunicación , Antineoplásicos/efectos adversos , Anciano de 80 o más Años , Automanejo/métodos , Participación del Paciente/métodos , Participación del Paciente/psicología
16.
BMC Anesthesiol ; 24(1): 165, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38693498

RESUMEN

BACKGROUND: Patients often desire involvement in anesthesia decisions, yet clinicians rarely explain anesthesia options or elicit preferences. We developed My Anesthesia Choice-Hip Fracture, a conversation aid about anesthesia options for hip fracture surgery and tested its preliminary efficacy and acceptability. METHODS: We developed a 1-page, tabular format, plain-language conversation aid with feedback from anesthesiologists, decision scientists, and community advisors. We conducted an online survey of English-speaking adults aged 50 and older. Participants imagined choosing between spinal and general anesthesia for hip fracture surgery. Before and after viewing the aid, participants answered a series of questions regarding key outcomes, including decisional conflict, knowledge about anesthesia options, and acceptability of the aid. RESULTS: Of 364/409 valid respondents, mean age was 64 (SD 8.9) and 59% were female. The proportion indicating decisional conflict decreased after reviewing the aid (63-34%, P < 0.001). Median knowledge scores increased from 50% correct to 67% correct (P < 0.001). 83% agreed that the aid would help them discuss options and preferences. 76.4% would approve of doctors using it. CONCLUSION: My Anesthesia Choice-Hip Fracture decreased decisional conflict and increased knowledge about anesthesia choices for hip fracture surgery. Respondents assessed it as acceptable for use in clinical settings. PRACTICE IMPLICATIONS: Use of clinical decision aids may increase shared decision-making; further testing is warranted.


Asunto(s)
Fracturas de Cadera , Humanos , Fracturas de Cadera/cirugía , Femenino , Masculino , Persona de Mediana Edad , Anciano , Anestesia General/métodos , Encuestas y Cuestionarios , Anestesia Raquidea/métodos , Participación del Paciente/métodos , Toma de Decisiones , Conducta de Elección
17.
Int J Cardiol ; 408: 132116, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-38703898

RESUMEN

The management of heart failure has undergone significant evolution, advancing from the initial utilization of digitalis and diuretics to the contemporary practice of personalized medicine and sophisticated device therapy. Despite these advancements, the persistent challenge of high hospitalization and readmission rates underscores an urgent need for innovative solutions. This manuscript explores how the integration of digital health technologies into interventional cardiology marks a paradigm shift in the management of heart failure. These technologies are no longer mere adjuncts but have become foundational to a modern approach, providing tools for continuous monitoring, patient education, and improved outcomes post-intervention. Through an examination of current trends, this perspective article highlights the transformative impact of wearable technologies, telehealth platforms, and advanced analytical tools in reshaping patient engagement and enabling proactive care strategies. Case studies illustrate the practical advantages, including enhanced medication adherence, early detection of heart failure signs, and a reduction in healthcare facility burdens. Central to this new digital health landscape is the Information Technology Management (ITM) system, a framework poised to revolutionize patient and caregiver engagement and pave the way for the future of interventional cardiology. This manuscript delineates the ITM system's innovative architecture and its consequential role in refining current and prospective cardiological interventions.


Asunto(s)
Cuidadores , Insuficiencia Cardíaca , Participación del Paciente , Telemedicina , Humanos , Insuficiencia Cardíaca/terapia , Participación del Paciente/métodos , Manejo de la Enfermedad , Tecnología Biomédica/tendencias , Tecnología Biomédica/métodos , Tecnología Digital , Salud Digital
18.
Health Soc Care Deliv Res ; 12(14): 1-182, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38794956

RESUMEN

Background: Acute inpatient mental health services report high levels of safety incidents. The application of patient safety theory has been sparse, particularly concerning interventions that proactively seek patient perspectives. Objective(s): Develop and evaluate a theoretically based, digital monitoring tool to collect real-time information from patients on acute adult mental health wards about their perceptions of ward safety. Design: Theory-informed mixed-methods study. A prototype digital monitoring tool was developed from a co-design approach, implemented in hospital settings, and subjected to qualitative and quantitative evaluation. Setting and methods: Phase 1: scoping review of the literature on patient involvement in safety interventions in acute mental health care; evidence scan of digital technology in mental health contexts; qualitative interviews with mental health patients and staff about perspectives on ward safety. This, alongside stakeholder engagement with advisory groups, service users and health professionals, informed the development processes. Most data collection was virtual. Phase 1 resulted in the technical development of a theoretically based digital monitoring tool that collected patient feedback for proactive safety monitoring. Phase 2: implementation of the tool in six adult acute mental health wards across two UK NHS trusts; evaluation via focused ethnography and qualitative interviews. Statistical analysis of WardSonar data and routine ward data involving construction of an hour-by-hour data set per ward, permitting detailed analysis of the use of the WardSonar tool. Participants: A total of 8 patients and 13 mental health professionals participated in Phase 1 interviews; 33 staff and 34 patients participated in Phase 2 interviews. Interventions: Patients could use a web application (the WardSonar tool) to record real-time perceptions of ward safety. Staff could access aggregated, anonymous data to inform timely interventions. Results: Coronavirus disease 2019 restrictions greatly impacted the study. Stakeholder engagement permeated the project. Phase 1 delivered a theory-based, collaboratively designed digital tool for proactive patient safety monitoring. Phase 2 showed that the tool was user friendly and broadly acceptable to patients and staff. The aggregated safety data were infrequently used by staff. Feasibility depended on engaged staff and embedding use of the tool in ward routines. There is strong evidence that an incident leads to increased probability of further incidents within the next 4 hours. This puts a measure on the extent to which social/behavioural contagion persists. There is weak evidence to suggest that an incident leads to a greater use of the WardSonar tool in the following hour, but none to suggest that ward atmosphere predicts future incidents. Therefore, how often patients use the tool seems to send a stronger signal about potential incidents than patients' real-time reports about ward atmosphere. Limitations: Implementation was limited to two NHS trusts. Coronavirus disease 2019 impacted design processes including stakeholder engagement; implementation; and evaluation of the monitoring tool in routine clinical practice. Higher uptake could enhance validity of the results. Conclusions: WardSonar has the potential to provide a valuable route for patients to communicate safety concerns. The WardSonar monitoring tool has a strong patient perspective and uses proactive real-time safety monitoring rather than traditional retrospective data review. Future work: The WardSonar tool can be refined and tested further in a post Coronavirus disease 2019 context. Study registration: This study is registered as ISRCTN14470430. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128070) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 14. See the NIHR Funding and Awards website for further award information.


Mental health wards can feel unsafe. We know that patients and staff have different ideas about what makes a hospital ward safe or unsafe. Patients are often the first to know when the atmosphere on a ward becomes tense but, often, no one asks them for input or feedback at the time. We worked with service users and staff to develop new technology to make it easy for patients to tell staff about changes in the ward atmosphere. We put everyone's ideas together and some technical developers then built a digital safety tool to use on a tablet computer. Patients put in anonymous information about the ward atmosphere and staff can read it straight away. We tested it on six adult acute mental health wards for 10 weeks. We asked patients and staff what they thought about the tool and we looked at how it was being used. Patients and staff liked the look of the tool on the tablet computer. Some staff said they did not need it because they could tell how patients were feeling, but patients told us that staff did not talk with them much and did not always know when patients were feeling tense. Coronavirus disease 2019 made life difficult on the wards. Most ward managers said the tool could be helpful, but they had not had time to get used to it on the wards. Occasionally, the tablet computers were out of action. Many staff tried hard to use the tool. Most patient information was gathered when it was calm, perhaps because staff were not too busy to help them. We found that this tool could help staff know about tensions on the ward, but they need to get used to it and bring it into ward routines.


Asunto(s)
COVID-19 , Seguridad del Paciente , Humanos , Adulto , Masculino , Femenino , COVID-19/epidemiología , Servicio de Psiquiatría en Hospital/organización & administración , Reino Unido , Investigación Cualitativa , Persona de Mediana Edad , Tecnología Digital , Servicios de Salud Mental/organización & administración , Medicina Estatal/organización & administración , Participación del Paciente/métodos
20.
J Gen Intern Med ; 39(9): 1681-1689, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38578536

RESUMEN

BACKGROUND: Primary care is an important yet underutilized resource in addressing the overdose crisis. Previous studies have identified important aspects of primary care for people who use drugs (PWUD) and have found patient involvement in healthcare decisions and goal-setting to be especially critical. However, there has been limited research describing the primary care goals of PWUD. In harm reduction settings, where it is imperative that PWUD set their own goals, this research gap becomes especially relevant. OBJECTIVE: To explore how PWUD navigate primary care with a focus on understanding their primary care goals. DESIGN: A qualitative study using semi-structured interviews. PARTICIPANTS: PWUD currently engaged in primary care at the Respectful and Equitable Access to Comprehensive Healthcare (REACH) Program, a harm reduction-based primary care program in New York City. APPROACH: Between June 2022 and August 2022, we conducted 17 semi-structured interviews. Informed by phenomenology, transcripts were coded using both inductive and deductive codes and themes were developed using thematic analysis approaches. KEY RESULTS: Phenomenological analysis identified four core components that, together, created an experience that participants described as "a partnership" between patient and provider: (1) patient-provider collaboration around patient-defined healthcare goals; (2) support provided by harm reduction-based approaches to primary care anchored in incrementalism and flexibility; (3) care teams' ability to address healthcare system fragmentation; and (4) the creation of social connections through primary care. This holistic partnership fostered positive primary care experiences and supported participants' self-defined care goals, thereby facilitating meaningful care outcomes. CONCLUSIONS: To best meet the primary care goals of PWUD, these findings underscore the importance of primary care providers and programs facilitating such partnerships through organizational-level support anchored in harm reduction. Future research should explore how these experiences in primary care affect patient health outcomes, ultimately shaping best practices in the provision of high-quality primary care for PWUD.


Asunto(s)
Objetivos , Reducción del Daño , Atención Primaria de Salud , Investigación Cualitativa , Humanos , Masculino , Femenino , Adulto , Persona de Mediana Edad , Consumidores de Drogas/psicología , Trastornos Relacionados con Sustancias/terapia , Trastornos Relacionados con Sustancias/psicología , Ciudad de Nueva York , Participación del Paciente/psicología , Participación del Paciente/métodos
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