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1.
Fam Med ; 56(5): 321-324, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38652849

RESUMO

BACKGROUND: During the COVID-19 pandemic, virtual care expanded rapidly at Michigan Medicine and other health systems. From family physicians' perspectives, this shift to virtual care has the potential to affect workflow, job satisfaction, and patient communication. As clinics reopened and care delivery models shifted to a combination of in-person and virtual care, the need to understand physician experiences with virtual care arose in order to improve both patient and provider experiences. This study investigated Michigan Medicine family medicine physicians' perceptions of virtual care through qualitative interviews to better understand how to improve the quality and effectiveness of virtual care for both patients and physicians. METHODS: We employed a qualitative descriptive design to examine physician perspectives through semistructured interviews. We coded and analyzed transcripts using thematic analysis, facilitated by MAXQDA (VERBI) software. RESULTS: The results of the analysis identified four major themes: (a) chief concerns that are appropriate for virtual evaluation, (b) physician perceptions of patient benefits, (c) focused but contextually enriched patient-physician communication, and (d) structural support needed for high-quality virtual care. CONCLUSIONS: These findings can help further direct the discussion of how to make use of resources to improve the quality and effectiveness of virtual care.


Assuntos
COVID-19 , Médicos de Família , Pesquisa Qualitativa , Telemedicina , Humanos , Médicos de Família/psicologia , Michigan , Atitude do Pessoal de Saúde , Relações Médico-Paciente , SARS-CoV-2 , Feminino , Masculino , Comunicação , Medicina de Família e Comunidade , Entrevistas como Assunto
2.
J Am Med Inform Assoc ; 31(4): 832-845, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38300760

RESUMO

OBJECTIVES: The aim of this study was to investigate how healthcare staff intermediaries support Federally Qualified Health Center (FQHC) patients' access to telehealth, how their approaches reflect cognitive load theory (CLT) and determine which approaches FQHC patients find helpful and whether their perceptions suggest cognitive load (CL) reduction. MATERIALS AND METHODS: Semistructured interviews with staff (n = 9) and patients (n = 22) at an FQHC in a Midwestern state. First-cycle coding of interview transcripts was performed inductively to identify helping processes and participants' evaluations of them. Next, these inductive codes were mapped onto deductive codes from CLT. RESULTS: Staff intermediaries used 4 approaches to support access to, and usage of, video visits and patient portals for FQHC patients: (1) shielding patients from cognitive overload; (2) drawing from long-term memory; (3) supporting the development of schemas; and (4) reducing the extraneous load of negative emotions. These approaches could contribute to CL reduction and each was viewed as helpful to at least some patients. For patients, there were beneficial impacts on learning, emotions, and perceptions about the self and technology. Intermediation also resulted in successful visits despite challenges. DISCUSSION: Staff intermediaries made telehealth work for FQHC patients, and emotional support was crucial. Without prior training, staff discovered approaches that aligned with CLT and helped patients access technologies. Future healthcare intermediary interventions may benefit from the application of CLT in their design. Staff providing brief explanations about technical problems and solutions might help patients learn about technologies informally over time. CONCLUSION: CLT can help with developing intermediary approaches for facilitating telehealth access.


Assuntos
Instalações de Saúde , Telemedicina , Humanos , Cognição
3.
Am J Prev Med ; 66(5): 870-876, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38191003

RESUMO

INTRODUCTION: Social media sites like Twitter (now X) are increasingly used to create health behavior metrics for public health surveillance. Yet little is known about social norms that may bias the content of posts about health behaviors. Social norms for posts about four health behaviors (smoking tobacco, drinking alcohol, physical activity, eating food) on Twitter/X were evaluated. METHODS: This was a randomized experiment delivered via web-based survey to adult, English-speaking Twitter/X users in three Michigan, USA, counties from 2020 to 2022 (n=559). Each participant viewed 24 posts presenting experimental manipulations regarding four health behaviors and answered questions about each post's social acceptability. Principal component analysis was used to combine survey responses into one perceived social acceptability measure. Linear mixed models with the Benjamini-Hochberg correction were implemented to test seven study hypotheses in 2023. RESULTS: Supporting six hypotheses, posts presenting healthier (CI: 0.028, 0.454), less stigmatized behaviors (CI: 0.552, 0.157) were more socially acceptable than posts regarding unhealthier, stigmatized behaviors. Unhealthy (CI: -0.268, -0.109) and stigmatized behavior (CI: -0.261, -0.103) posts were less acceptable for more educated participants. Posts about collocated activities (CI: 0.410, 0.573) and accompanied by expressions of liking (CI: 0.906, 1.11) were more acceptable than activities undertaken alone or disliked. Contrary to one hypothesis, posts reporting unusual activities were less acceptable than usual ones (CI: -0.472, 0.312). CONCLUSIONS: Perceived social acceptability may be associated with the frequency and content of health behavior posts. Users of Twitter/X and other social media platform posts to estimate health behavior prevalence should account for potential estimation biases from perceived social acceptability of posts.


Assuntos
Comportamentos Relacionados com a Saúde , Mídias Sociais , Humanos , Mídias Sociais/estatística & dados numéricos , Masculino , Feminino , Adulto , Michigan , Inquéritos e Questionários , Pessoa de Meia-Idade , Normas Sociais , Consumo de Bebidas Alcoólicas/psicologia , Consumo de Bebidas Alcoólicas/epidemiologia , Exercício Físico/psicologia , Adulto Jovem , Fumar/psicologia , Fumar/epidemiologia
4.
J Am Med Inform Assoc ; 31(3): 674-691, 2024 Feb 16.
Artigo em Inglês | MEDLINE | ID: mdl-38134954

RESUMO

OBJECTIVES: Investigate how people with chronic obstructive pulmonary disease (COPD)-an example of a progressive, potentially fatal illness-are using digital technologies (DTs) to address illness experiences, outcomes and social connectedness. MATERIALS AND METHODS: A transformative mixed methods study was conducted in Canada with people with COPD (n = 77) or with a progressive lung condition (n = 6). Stage-1 interviews (n = 7) informed the stage-2 survey. Survey responses (n = 80) facilitated the identification of participants for stage-3 interviews (n = 13). The interviews were thematically analyzed. Descriptive statistics were calculated for the survey. The integrative mixed method analysis involved mixing between and across the stages. RESULTS: Most COPD participants (87.0%) used DTs. However, few participants frequently used DTs to self-manage COPD. People used DTs to seek online information about COPD symptoms and treatments, but lacked tailored information about illness progression. Few expressed interest in using DTs for self- monitoring and tracking. The regular use of DTs for intergenerational connections may facilitate leaving a legacy and passing on traditions and memories. Use of DTs for leisure activities provided opportunities for connecting socially and for respite, reminiscing, distraction and spontaneity. DISCUSSION AND CONCLUSION: We advocate reconceptualizing consumer health technologies to prioritize quality of life for people with a progressive, potentially fatal illness. "Quality of life informatics" should focus on reducing stigma regarding illness and disability and taboo towards death, improving access to palliative care resources and encouraging experiences to support social, emotional and mental health. For DTs to support people with fatal, progressive illnesses, we must expand informatics strategies to quality of life.


Assuntos
Informática Aplicada à Saúde dos Consumidores , Doença Pulmonar Obstrutiva Crônica , Qualidade de Vida , Humanos , Saúde Mental , Cuidados Paliativos , Doença Pulmonar Obstrutiva Crônica/terapia
5.
J Med Internet Res ; 25: e49804, 2023 09 29.
Artigo em Inglês | MEDLINE | ID: mdl-37773609

RESUMO

BACKGROUND: The COVID-19 pandemic resulted in rapid changes in how patient care was provided, particularly through the expansion of telehealth and audio-only phone-based care. OBJECTIVE: The goal of this study was to evaluate inequities in video and audio-only care during various time points including the initial wave of the COVID-19 pandemic, later stages of the pandemic, and a historical control. We sought to understand the characteristics of care during this time for a variety of different groups of patients that may experience health care inequities. METHODS: We conducted a retrospective analysis of electronic health record (EHR) data from encounters from 34 family medicine and internal medicine primary care clinics in a large, Midwestern health system, using a repeated cross-sectional, observational study design. These data included patient demographic data, as well as encounter, diagnosis, and procedure records. Data were obtained for all in-person and telehealth encounters (including audio-only phone-based care) that occurred during 3 separate time periods: an initial COVID-19 period (T2: March 16, 2020, to May 3, 2020), a later COVID-19 period (T3: May 4, 2020, to September 30, 2020), and a historical control period from the previous year (T1: March 16, 2019, to September 30, 2019). Primary analysis focused on the status of each encounter in terms of whether it was completed as scheduled, it was canceled, or the patient missed the appointment. A secondary analysis was performed to evaluate the likelihood of an encounter being completed based on visit modality (phone, video, in-person). RESULTS: In total, there were 938,040 scheduled encounters during the 3 time periods, with 178,747 unique patients, that were included for analysis. Patients with completed encounters were more likely to be younger than 65 years old (71.8%-74.1%), be female (58.8%-61.8%), be White (75.6%-76.7%), and have no significant comorbidities (63.2%-66.8%) or disabilities (53.2%-61.1%) in all time periods than those who had only canceled or missed encounters. Effects on different subpopulations are discussed herein. CONCLUSIONS: Findings from this study demonstrate that primary care utilization across delivery modalities (in person, video, and phone) was not equivalent across all groups before and during the COVID-19 pandemic and different groups were differentially impacted at different points. Understanding how different groups of patients responded to these rapid changes and how health care inequities may have been affected is an important step in better understanding implementation strategies for digital solutions in the future.


Assuntos
Acessibilidade aos Serviços de Saúde , Atenção Primária à Saúde , Telemedicina , Idoso , Feminino , Humanos , COVID-19/epidemiologia , Estudos Transversais , Pandemias , Estudos Retrospectivos , Atenção à Saúde
6.
J Telemed Telecare ; : 1357633X231194382, 2023 Aug 28.
Artigo em Inglês | MEDLINE | ID: mdl-37641207

RESUMO

BACKGROUND: Virtual care expanded rapidly during the COVID-19 pandemic, and how this shift affected healthcare disparities among subgroups of patients is of concern. Racial and ethnic minorities, older adults, individuals with less education, and lower-income households have lower rates of home broadband, smartphone ownership, and patient portal adoption, which may directly affect access to virtual care. Because primary care is a major access point to healthcare, perspectives of primary care providers are critical to inform the implementation of equitable virtual care. OBJECTIVE: The aim of this mixed methods study was to explore primary care physician experiences and perceptions of barriers and facilitators to equitable virtual care. DESIGN: We used an explanatory sequential mixed methods design, which consists of first collecting and analyzing quantitative survey data, then using those results to inform a qualitative follow-up phase to explain and expand on results. PARTICIPANTS: Primary care physicians in a family medicine department at an academic medical center responded to surveys (n = 38) and participated in interviews (n = 16). APPROACH: Participants completed a survey concerning frequency and preferences about video visits, pros and cons of video visits, communication aspects, and sufficiency of the technology. A purposeful sample of participants completed semi-structured interviews about their virtual care experiences with a focus on equity for subpopulations. KEY RESULTS: The results indicated that physicians have observed equity issues for unique patient populations. The results add to the understanding of nuanced ways in which virtual care can increase and decrease healthcare access for unique populations. Patients with limited English proficiency were particularly affected by inequity in virtual care access. CONCLUSION: Additional research and interventions are needed to improve portal access for those with limited English proficiency. Improvements should focus on health system interventions that expand access without requiring increased patient burden.

7.
J Med Internet Res ; 25: e42586, 2023 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-36525332

RESUMO

BACKGROUND: The task complexity involved in connecting to telehealth video visits may disproportionately impact health care access in populations already experiencing inequities. Human intermediaries can be a strategy for addressing health care access disparities by acting as technology helpers to reduce the cognitive load demands required to learn and use patient-facing telehealth technologies. OBJECTIVE: We conducted a cognitive load theory-informed pilot intervention involving warm accompaniment telehealth helping sessions with patients at a Federally Qualified Health Center (FQHC). We demonstrate how to design and report recruitment methods, reach, delivery process, and the preliminary impact of a novel equity-focused intervention. METHODS: Early into the COVID-19 pandemic a telehealth helping session was offered to patients at FQHC via phone. Graduate students led the sessions on conducting a telehealth video test run or helping with patient portal log-in. They systematically recorded their recruitment efforts, intervention observations, and daily reflection notes. Following the intervention, we asked the intervention participants to participate in an interview and all patients who had telehealth visits during and 4 weeks before and after the intervention period to complete a survey. Electronic health records were reviewed to assess telehealth visit format changes. Descriptive and inferential statistical analyses of the recruitment records, electronic health record data, and surveys were performed. Through integrative analysis, we developed process-related themes and recommendations for future equity-focused telehealth interventions. RESULTS: Of the 239 eligible patients, 34 (14.2%) completed the intervention and 3 (1.2%) completed subsequent interviews. The intervention participants who completed the survey (n=15) had lower education and less technological experience than the nonintervention survey participants (n=113). We identified 3 helping strategies for cognitive load reduction: providing step-by-step guidance for configuring and learning, building rapport to create confidence while problem-solving, and being on the same page to counter informational distractions. Intervention participants reported increased understanding but found that learning the video visit software was more difficult than nonintervention participants. A comparison of visit experiences did not find differences in difficulty (cognitive load measure) using telehealth-related technologies, changes to visit modality, or reported technical problems during the visit. However, the intervention participants were significantly less satisfied with the video visits. CONCLUSIONS: Although a limited number of people participated in the intervention, it may have reached individuals more likely to need technology assistance. We postulate that significant differences between intervention and nonintervention participants were rooted in baseline differences between the groups' education level, technology experience, and technology use frequency; however, small sample sizes limit conclusions. The barriers encountered during the intervention suggest that patients at FQHC may require both improved access to web-based technologies and human intermediary support to make telehealth video visits feasible. Future large, randomized, equity-focused studies should investigate blended strategies to facilitate video visit access.


Assuntos
COVID-19 , Telemedicina , Humanos , Estados Unidos , Pandemias , Projetos Piloto , Estudantes , Cognição
8.
Yearb Med Inform ; 31(1): 15-19, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36463864

RESUMO

As the informatics community commits to the goal of advancing health equity, it is essential that we openly critique our current approaches and reimagine the ways in which we design, implement, evaluate, and advocate for policies related to informatics interventions. In this paper, we present five provocations as a starting point for building more conscientious informatics practice in service of this goal: 1) Health informatics interventions can create an "illusion of impactful action" without significant material benefits for marginalized patients, families, and communities; 2) Health informatics interventions target the wrong stakeholders, the wrong processes, and the wrong technologies to achieve equity; 3) Informaticians must conceptualize health literacy and other factors shaping patients' experiences as a system-level rather than individual-level characteristic; 4) Informatics interventions wrongly assume that interacting contextual factors can be meaningfully captured by over-simplified structured variables; and 5) Informatics interventions often specify the wrong system boundaries and solution space. We further assert that drastic shifts in our current practices will allow us to honor our claims of valuing patient-centered approaches, especially for marginalized communities.


Assuntos
Equidade em Saúde , Letramento em Saúde , Informática Médica , Humanos
9.
Yearb Med Inform ; 31(1): 307-316, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36463889

RESUMO

OBJECTIVES: There is growing attention to health equity in health informatics research. However, the literature lacks a comprehensive framework outlining critical considerations for health informatics research with marginalized groups. METHODS: Literature review and experiences from nine equity-focused health informatics conducted in the United States and Canada. Studies focus on disparities related to age, disability or chronic illness, gender/sex, place of residence (rural/urban), race/ethnicity, sexual orientation, and socioeconomic status. RESULTS: We found four key equity-related methodological considerations. To assist informaticists in addressing equity, we contribute a novel framework to synthesize these four considerations: PRAXIS (Participation and Representation, Appropriate methods and interventions, conteXtualization and structural competence, Investigation of Systematic differences). Participation and representation refers to the necessity for meaningful participation of marginalized groups in research, to elevate the voices of marginalized people, and to represent marginalized people as they are comfortable (e.g., asset-based versus deficit-based). Appropriate methods and interventions mean targeting methods, instruments, and interventions to reach and engage marginalized people. Contextualization and structural competence mean avoiding individualization of systematic disparities and targeting social conditions that (re-)produce inequities. Investigation of systematic differences highlights that experiences of people marginalized according to specific traits differ from those not so marginalized, and thus encourages studying the specificity of these differences and investigating and preventing intervention-generated inequality. We outline guidance for operationalizing these considerations at four research stages. CONCLUSIONS: This framework can assist informaticists in systematically addressing these considerations in their research in four research stages: project initiation; sampling and recruitment; data collection; and data analysis. We encourage others to use these insights from multiple studies to advance health equity in informatics.


Assuntos
Equidade em Saúde , Informática Médica , Humanos , Feminino , Masculino , Coleta de Dados , Análise de Dados , Canadá
10.
JAMIA Open ; 5(1): ooac007, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35274083

RESUMO

Objective: To explore diverse provider perspectives on: strategies for addressing patient medication cost barriers; patient medication cost information gaps; current medication cost-related informatics tools; and design features for future tool development. Materials and Methods: We conducted 38 semistructured interviews with providers (physicians, nurses, pharmacists, social workers, and administrators) in a Midwestern health system in the United States. We used 3 rounds of qualitative coding to identify themes. Results: Providers lacked access to information about: patients' ability to pay for medications; true costs of full medication regimens; and cost impacts of patient insurance changes. Some providers said that while existing cost-related tools were helpful, they contained unclear insurance information and several questioned the information's quality. Cost-related information was not available to everyone who needed it and was not always available when needed. Fragmentation of information across sources made cost-alleviation information difficult to access. Providers desired future tools to compare medication costs more directly; provide quick references on costs to facilitate clinical conversations; streamline medication resource referrals; and provide centrally accessible visual summaries of patient affordability challenges. Discussion: These findings can inform the next generation of informatics tools for minimizing patients' out-of-pocket costs. Future tools should support the work of a wider range of providers and situations and use cases than current tools do. Such tools would have the potential to improve prescribing decisions and better link patients to resources. Conclusion: Results identified opportunities to fill multidisciplinary providers' information gaps and ways in which new tools could better support medication affordability for patients.

11.
BMC Public Health ; 22(1): 471, 2022 03 09.
Artigo em Inglês | MEDLINE | ID: mdl-35264132

RESUMO

BACKGROUND: Stigmatization may prompt gay, bisexual, queer and other men who have sex with men (GBQMSM) to avoid or delay HIV testing. There has been little attention to GBQMSMs' perspectives about how stigma may influence their decisions about whether, where, and how often to get tested for HIV. METHODS: We conducted nine focus groups with 64 adult GBQMSM in Metropolitan Detroit, including HIV-negative men and people living with HIV (PLWH). Data were thematically analyzed deductively and inductively in three rounds. RESULTS: Three themes emerged regarding whether to get tested: (1) Perceived promiscuity, risk perceptions and HIV testing; (2) Fearing sexual rejection; and (3) Fearing friend and family member distancing and rejection. Themes concerning where to get tested included: (4) Conflating HIV testing and diagnosis; and (5) Seeking privacy and safety at specialized services. As for how often to get tested, themes included: (6) Reducing contact with healthcare providers due to intersectional stigma; (7) Responsibility and regular testing; and (8) HIV stigma and testing as routine care. Black participants articulated themes (3), (4), and (6) with greater frequency than other participants. Framing HIV testing as a personal responsibility may have created a "new stigma," with unintended consequences not observed with "routine healthcare" messaging. CONCLUSIONS: GBQMSMs' perspectives indicate the potential for new foci for HIV testing promotion interventions based on stigma-related issues that they deem important. There is a need for interventions to challenge the "promiscuity" stereotype, and to reduce the sexual stigmatization of GBQMSM living with HIV/AIDS-especially online. Provider stigma requires both intervention and continued availability of specialized services. Future stigma-reduction interventions for Black GBQMSM could focus on building family support/acceptance, awareness of multiple testing options, and integrating LGBTQ-related issues into initiatives for racial justice in health care.


Assuntos
Infecções por HIV , Minorias Sexuais e de Gênero , Adulto , Bissexualidade , Infecções por HIV/diagnóstico , Teste de HIV , Homossexualidade Masculina , Humanos , Masculino , Estigma Social
12.
J Am Med Inform Assoc ; 29(6): 1029-1039, 2022 05 11.
Artigo em Inglês | MEDLINE | ID: mdl-35182148

RESUMO

OBJECTIVE: We investigated patient experiences with medication- and test-related cost conversations with healthcare providers to identify their preferences for future informatics tools to facilitate cost-sensitive care decisions. MATERIALS AND METHODS: We conducted 18 semistructured interviews with diverse patients (ages 24-81) in a Midwestern health system in the United States. We identified themes through 2 rounds of qualitative coding. RESULTS: Patients believed their providers could help reduce medication-related costs but did not see how providers could influence test-related costs. Patients viewed cost conversations about medications as beneficial when providers could adjust medical recommendations or provide resources. However, cost conversations did not always occur when patients felt they were needed. Consequently, patients faced a "cascade of work" to address affordability challenges. To prevent this, collaborative informatics tools could facilitate cost conversations and shared decision-making by providing information about a patient's financial constraints, enabling comparisons of medication/testing options, and addressing transportation logistics to facilitate patient follow-through. DISCUSSION: Like providers, patients want informatics tools that address patient out-of-pocket costs. They want to discuss healthcare costs to reduce the frequency of unaffordable costs and obtain proactive assistance. Informatics interventions could minimize the cascade of patient work through shared decision-making and preventative actions. Such tools might integrate information about efficacy, costs, and side effects to support decisions, present patient decision aids, facilitate coordination among healthcare units, and eventually improve patient outcomes. CONCLUSION: To prevent a burdensome cascade of work for patients, informatics tools could be designed to support cost conversations and decisions between patients and providers.


Assuntos
Tomada de Decisão Compartilhada , Custos de Cuidados de Saúde , Adulto , Idoso , Idoso de 80 Anos ou mais , Comunicação , Custos de Medicamentos , Humanos , Informática , Pessoa de Meia-Idade , Estados Unidos , Adulto Jovem
14.
JMIR Hum Factors ; 8(2): e26012, 2021 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-34121664

RESUMO

BACKGROUND: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session. Intradialytic hypotension (IDH)-low blood pressure during hemodialysis-is a serious but common complication of hemodialysis. Although patients on dialysis already participate in their care, activating patients toward IDH prevention may reduce their risk of IDH. Interactive, technology-based interventions hold promise as a platform for patient activation. However, little is known about the usability challenges that patients undergoing hemodialysis may face when using tablet-based informatics interventions, especially while dialyzing. OBJECTIVE: This study aims to test the usability of a patient-facing, tablet-based intervention that includes theory-informed educational modules and motivational interviewing-based mentoring from patient peers via videoconferencing. METHODS: We conducted a cross-sectional, mixed methods usability evaluation of the tablet-based intervention by using think-aloud methods, field notes, and structured observations. These qualitative data were evaluated by trained researchers using a structured data collection instrument to capture objective observational data. We calculated descriptive statistics for the quantitative data and conducted inductive content analysis using the qualitative data. RESULTS: Findings from 14 patients cluster around general constraints such as the use of one arm, dexterity issues, impaired vision, and lack of experience with touch screen devices. Our task-by-task usability results showed that specific sections with the greatest difficulty for users were logging into the intervention (difficulty score: 2.08), interacting with the quizzes (difficulty score: 1.92), goal setting (difficulty score: 2.28), and entering and exiting videoconference rooms (difficulty score: 2.07) that are used to engage with peers during motivational interviewing sessions. CONCLUSIONS: In this paper, we present implications for designing informatics interventions for patients on dialysis and detail resulting changes to be implemented in the next version of this intervention. We frame these implications first through the context of the role the patients' physical body plays when interacting with the intervention and then through the digital considerations for software and interface interaction.

15.
J Am Med Inform Assoc ; 28(8): 1612-1631, 2021 07 30.
Artigo em Inglês | MEDLINE | ID: mdl-34117493

RESUMO

OBJECTIVE: Hemodialysis patients frequently experience dialysis therapy sessions complicated by intradialytic hypotension (IDH), a major patient safety concern. We investigate user-centered design requirements for a theory-informed, peer mentoring-based, informatics intervention to activate patients toward IDH prevention. METHODS: We conducted observations (156 hours) and interviews (n = 28) with patients in 3 hemodialysis clinics, followed by 9 focus groups (including participatory design activities) with patients (n = 17). Inductive and deductive analyses resulted in themes and design principles linked to constructs from social, cognitive, and self-determination theories. RESULTS: Hemodialysis patients want an informatics intervention for IDH prevention that collapses distance between patients, peers, and family; harnesses patients' strength of character and resolve in all parts of their life; respects and supports patients' individual needs, preferences, and choices; and links "feeling better on dialysis" to becoming more involved in IDH prevention. Related design principles included designing for: depth of interpersonal connections; positivity; individual choice and initiative; and comprehension of connections and possible actions. DISCUSSION: Findings advance the design of informatics interventions by presenting design requirements for outpatient safety and addressing key design opportunities for informatics to support patient involvement; these include incorporation of behavior change theories. Results also demonstrate the meaning of design choices for hemodialysis patients in the context of their experiences; this may have applicability to other populations with serious illnesses. CONCLUSION: The resulting patient-facing informatics intervention will be evaluated in a pragmatic cluster-randomized controlled trial in 28 hemodialysis facilities in 4 US regions.


Assuntos
Hipotensão , Participação do Paciente , Grupos Focais , Humanos , Diálise Renal/efeitos adversos , Design Centrado no Usuário
16.
Transgend Health ; 5(3): 158-165, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32923666

RESUMO

Purpose: Gender transition is a complex life change, and transgender identity disclosures are pivotal moments that delineate the gender transition process. The purpose of this study was to quantify the average sequence in which transgender people disclose their transgender identity to different people in their lives, such as medical professionals, family members, and online networks, and to understand the emotional implications of these disclosures. Methods: We used mixed methods to identify 362 transgender identity disclosure social media posts within 41,066 total posts from 240 Tumblr transition blogs (online spaces in which transgender people document gender transitions). We manually assigned each disclosure post an audience category, and then calculated the average sequence in which people in this sample disclosed their transgender identity to different audiences. Results: Health professionals, such as physicians and therapists, were on average some of the very first people to whom transgender Tumblr bloggers disclosed their transgender identity. Such disclosures were often anxiety provoking and emotionally difficult, whether intentional or involuntary. Next, they often disclosed to friends, followed by close family (e.g., parents and siblings) and then extended family (e.g., grandparents). Mass disclosures to large portions of a person's network, such as on one's Facebook profile, usually came late in the disclosure process. Conclusion: Gender transition is a staged process that includes a series of disclosures to different audiences that follows an average sequence. Because health care providers (e.g., physicians and therapists) who work with transgender patients are often some of the very first people to whom transgender people in our sample disclosed, providers must practice extra sensitivity when responding to such disclosures.

18.
BMC Nephrol ; 21(1): 67, 2020 02 27.
Artigo em Inglês | MEDLINE | ID: mdl-32103726

RESUMO

BACKGROUND: Hemodialysis sessions frequently become unstable from complications such as intradialytic hypotension and untoward symptoms. Previous patient safety initiatives promote prevention of treatment complications; yet, they have placed little specific focus on avoidable session instability. A patient-centered definition of session instability grounded in patient experiences, and an understanding of patient perceptions of causes and solutions to instability, may enable such efforts. METHODS: Twenty-five participants participated in three focus groups and/or a survey. They were purposively sampled for variation in region of residence, and sensitivity to patient well-being. Focus group recordings were analyzed using descriptive coding, in vivo coding, and thematic analysis. RESULTS: Patients define unstable sessions ("bad runs") as those in which they experience severe discomfort or unanticipated events that interfere with their ability to receive therapy. Bad runs were characterized primarily by cramping, low blood pressure ("crashing"), cannulation-related difficulties ("bad sticks"), and clotting of the dialysis circuit or vascular access. Patients believed that cramping and crashing could be explained by both patient and clinician behavior: patient fluid consumption and providers' fluid removal goals. Patients felt that the responsibility for cannulation-related problems lay with dialysis staff, and they asked for different staff or self-cannulated as solutions. Clotting was viewed as an idiosyncratic issue with one's body, and perceived solutions were clinician-driven. Patients expressed concern about "bad runs" on their ability to achieve fluid balance. CONCLUSIONS: Findings point to novel priorities for efforts to enhance hemodialysis session stability, and areas in which patients can be supported to become involved in such efforts.


Assuntos
Hipotensão/etiologia , Cãibra Muscular/etiologia , Diálise Renal/efeitos adversos , Adulto , Idoso , Coagulação Sanguínea , Estudos Transversais , Feminino , Grupos Focais , Humanos , Hipotensão/prevenção & controle , Masculino , Pessoa de Meia-Idade , Cãibra Muscular/prevenção & controle , Equilíbrio Hidroeletrolítico , Desequilíbrio Hidroeletrolítico/complicações
19.
AMIA Annu Symp Proc ; 2020: 583-592, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33936432

RESUMO

Addressing patients' social determinants of health via community resource referrals has historically been the primary domain of social workers and information and referral specialists; however, community resource referral platforms have recently entered the market. We lack an account of the process of community resource referrals and the role of technologies within it. Using sociotechnical systems theory, we analyze data from 12 focus groups (n=102) with healthcare providers, and community organization staff and volunteers in Metropolitan Detroit to describe the process of community resource referral. Findings reveal a deeply sociotechnical process including the following steps: assessing patients' social needs; choosing appropriate referral sources; and facilitating connections. We characterize the importance of knowledge and skills, personal relationships, interorganizational networks, and data sources such as service directories in the referral process. Findings suggest that digital platforms may augment referral functions, but should not be seen to replace interpersonal work, relationships, and interorganizational networks.


Assuntos
Saúde Pública , Encaminhamento e Consulta , Grupos Focais , Pessoal de Saúde , Humanos , Avaliação das Necessidades
20.
J Am Med Inform Assoc ; 27(2): 254-264, 2020 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-31633756

RESUMO

OBJECTIVE: Initiatives to reduce neighborhood-based health disparities require access to meaningful, timely, and local information regarding health behavior and its determinants. We examined the validity of Twitter as a source of information for neighborhood-level analysis of dietary choices and attitudes. MATERIALS AND METHODS: We analyzed the "healthiness" quotient and sentiment in food-related tweets at the census tract level, and associated them with neighborhood characteristics and health outcomes. We analyzed keywords driving the differences in food healthiness between the most and least-affluent tracts, and qualitatively analyzed contents of a random sample of tweets. RESULTS: Significant, albeit weak, correlations existed between healthiness and sentiment in food-related tweets and tract-level measures of affluence, disadvantage, race, age, U.S. density, and mortality from conditions associated with obesity. Analyses of keywords driving the differences in food healthiness revealed foods high in saturated fat (eg, pizza, bacon, fries) were mentioned more frequently in less-affluent tracts. Food-related discussion referred to activities (eating, drinking, cooking), locations where food was consumed, and positive (affection, cravings, enjoyment) and negative attitudes (dislike, personal struggles, complaints). DISCUSSION: Tweet-based healthiness scores largely correlated with offline phenomena in the expected directions. Social media offer less resource-intensive data collection methods than traditional surveys do. Twitter may assist in informing local health programs that focus on drivers of food consumption and could inform interventions focused on attitudes and the food environment. CONCLUSIONS: Twitter provided weak but significant signals concerning food-related behavior and attitudes at the neighborhood level, suggesting its potential usefulness for informing local health disparity reduction efforts.


Assuntos
Dieta , Alimentos , Características de Residência , Mídias Sociais , Disparidades nos Níveis de Saúde , Humanos , Densidade Demográfica , Análise de Regressão , Fatores Socioeconômicos , Estados Unidos
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