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BackgroundOpen design formats for mobile apps help clinicians and stakeholders bring their needs to direct, co-creative solutions. Palliative care for patients with advanced cancers requires intensive monitoring and support and remains an area in high need for innovation.ObjectiveThis study aims to use community-partnered participatory research to co-design and pretest a mobile app that focuses on palliative care priorities of clinicians and patients with advanced cancer.MethodsIn-person and teleconference workshops were held with patient and family stakeholders, researchers, and clinicians in palliative care and oncology. Question prompts, written feedback, semistructured interviews, and facilitated group discussions identified the core palliative care needs. Using Chorus, a no-code app-building platform, a mobile app was co-designed with the stakeholders. A pretest with 11 patients was conducted, with semistructured interviews of clinician and patient users for feedback.ResultsKey themes identified from the focus groups included needs for patient advocacy and encouragement, access to vetted information, patient-clinician communication support, and symptom management. The initial prototype, My Wellness App, contained a weekly wellness journal to track patient-reported symptoms, goals, and medication use; information on self-management of symptoms; community resources; and patient and caregiver testimonial videos. Initial pretesting identified value in app-based communication for clinicians, patients, and caregivers, with suggestions for improving user interface, feedback and presentation of symptom reports, and gamification and staff coordinators to support patient app engagement.ConclusionsThe development of a mobile app using community-partnered participatory research is a low-technology and feasible intervention for palliative care. Iterative redesign and user interface expertise may improve implementation.

BackgroundOpen design formats for mobile apps help clinicians and stakeholders bring their needs to direct, co-creative solutions. Palliative care for patients with advanced cancers requires intensive monitoring and support and remains an area in high need for innovation.ObjectiveThis study aims to use community-partnered participatory research to co-design and pretest a mobile app that focuses on palliative care priorities of clinicians and patients with advanced cancer.MethodsIn-person and teleconference workshops were held with patient and family stakeholders, researchers, and clinicians in palliative care and oncology. Question prompts, written feedback, semistructured interviews, and facilitated group discussions identified the core palliative care needs. Using Chorus, a no-code app-building platform, a mobile app was co-designed with the stakeholders. A pretest with 11 patients was conducted, with semistructured interviews of clinician and patient users for feedback.ResultsKey themes identified from the focus groups included needs for patient advocacy and encouragement, access to vetted information, patient-clinician communication support, and symptom management. The initial prototype, My Wellness App, contained a weekly wellness journal to track patient-reported symptoms, goals, and medication use; information on self-management of symptoms; community resources; and patient and caregiver testimonial videos. Initial pretesting identified value in app-based communication for clinicians, patients, and caregivers, with suggestions for improving user interface, feedback and presentation of symptom reports, and gamification and staff coordinators to support patient app engagement.ConclusionsThe development of a mobile app using community-partnered participatory research is a low-technology and feasible intervention for palliative care. Iterative redesign and user interface expertise may improve implementation.

BackgroundAdvocacy is a core value of the medical profession. However, patient advocacy (advocacy) is not uniformly assessed and there are no studies of the behaviors clinical supervisors consider when assessing advocacy.ObjectiveTo explore how medical students and supervisors characterize advocacy during an internal medicine clerkship, how assessment of advocacy impacted students and supervisors, and elements that support effective implementation of advocacy assessment.DesignA constructivist qualitative paradigm was used to understand advocacy assessment from the perspectives of students and supervisors.ParticipantsMedical students who completed the internal medicine clerkship at UCSF during the 2018 and 2019 academic years and supervisors who evaluated students during this period.ApproachSupervisor comments from an advocacy assessment item in the medicine clerkship and transcripts of focus groups were used to explore which behaviors students and supervisors deem to be advocacy. Separate focus groups with both students and supervisors examined the impact that advocacy assessment had on students' and supervisors' perceptions of advocacy and what additional context was necessary to effectively implement advocacy assessment.Key resultsStudents and supervisors define advocacy as identifying and addressing social determinants of health, recognizing and addressing patient wishes and concerns, navigating the health care system, conducting appropriate evaluation and treatment, and creating exceptional therapeutic alliances. Effective implementation of advocacy assessment requires the creation of non-hierarchical team environments, supervisor role modeling, and pairing assessment with teaching of advocacy skills. Inclusion of advocacy assessment reflects and dictates institutional priorities, shapes professional identity formation, and enhances advocacy skill development for students and their supervisors.ConclusionsStudents and supervisors consider advocacy to be a variety

Copy-number variants and structural variants (CNVs/SVs) drive many neurodevelopmental-related disorders. While many neurodevelopmental-related CNVs/SVs give rise to complex phenotypes, the overlap in phenotypic presentation between independent CNVs can be extensive and provides a motivation for shared approaches. This confluence at the level of clinical phenotype implies convergence in at least some aspects of the underlying genomic mechanisms. With this perspective, our Commission on Novel Technologies for Neurodevelopmental CNVs asserts that the time has arrived to approach neurodevelopmental-related CNVs/SVs as a class of disorders that can be identified, investigated, and treated on the basis of shared mechanisms and/or pathways (e.g., molecular, neurological, or developmental). To identify common etiologic mechanisms among uncommon neurodevelopmental-related disorders and to potentially identify common therapies, it is paramount for teams of scientists, clinicians, and patients to unite their efforts. We bring forward novel, collaborative, and integrative strategies to translational CNV/SV research that engages diverse stakeholders to help expedite therapeutic outcomes. We articulate a clear vision for piloted roadmap strategies to reduce patient/caregiver burden and redundancies, increase efficiency, avoid siloed data, and accelerate translational discovery across CNV/SV-based syndromes.

Introduction: Voters facing illness or disability are disproportionately under-represented in terms of voter turnout. Earlier research has indicated that enfranchisement of these populations may reinforce the implementation of policies improving health outcomes and equity. Due to the confluence of the coronavirus 2019 (COVID-19) pandemic and the 2020 election, we aimed to assess emergency absentee voting processes, which allow voters hospitalized after regular absentee deadlines to still obtain an absentee ballot, and election changes due to COVID-19 in all 50 states. Methods: We performed a cross-sectional study collecting 34 variables pertaining to emergency voting processes and COVID-19-related election changes, including deadlines, methods of submission for applications and ballots, and specialized services for patients. Data were obtained from, in order of priority, state boards of elections websites, poll worker manuals, application forms, and state legislation. We verified all data through direct correspondence with state boards of elections. Results: Emergency absentee voting processes are in place in 39 states, with the remaining states having universal vote-by-mail (n = 5) or extended regular absentee voting deadlines (n = 6). The emergency absentee period most commonly began within 24 hours following the normal absentee application deadline, which was often seven days before an election (n = 11). Unique aspects of emergency voting processes included patients designating an “authorized agent” to deliver their applications and ballots (n = 38), electronic ballot delivery (n = 5), and in-person teams that deliver ballots directly to patients (n = 18). Documented barriers in these processes nationwide include unavailable online information (n = 11), restrictions mandating agents to be family members (n = 7), physician affidavits or signatures (n = 9), and notary or witness signature requirements (n = 15). For the November 2020 presidential election, 12 states

This article describes the October 2020 proceedings of the Million Hearts Cardiac Rehabilitation Think Tank: Accelerating New Care Models, convened with representatives from professional organizations, cardiac rehabilitation (CR) programs, academic institutions, federal agencies, payers, and patient representative groups. As CR delivery evolves, terminology is evolving to reflect not where activities occur (eg, center, home) but how CR is delivered: in-person synchronous, synchronous with real-time audiovisual communication (virtual), or asynchronous (remote). Patients and CR staff may interact through ≥1 delivery modes. Though new models may change how CR is delivered and who can access CR, new models should not change what is delivered-a multidisciplinary program addressing CR core components. During the coronavirus disease 2019 (COVID-19) public health emergency, Medicare issued waivers to allow virtual CR; it is unclear whether these waivers will become permanent policy post-public health emergency. Given CR underuse and disparities in delivery, new models must equitably address patient and health system contributors to disparities. Strategies for implementing new CR care models address safety, exercise prescription, monitoring, and education. The available evidence supports the efficacy and safety of new CR care models. Still, additional research should study diverse populations, impact on patient-centered outcomes, effect on long-term outcomes and health care utilization, and implementation in diverse settings. CR is evolving to include in-person synchronous, virtual, and remote modes of delivery; there is significant enthusiasm for implementing new care models and learning how new care models can broaden access to CR, improve patient outcomes, and address health inequities.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities, including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.

Background: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration. Objective: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps. Methods: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings. Results: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benef, NORDeHEALTH, Beyond Implementation of eHealth

Background: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration. Objective: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps. Methods: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings. Results: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benef, NORDeHEALTH, Beyond Implementation of eHealth

Background: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration. Objective: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps. Methods: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings. Results: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benef, NORDeHEALTH, Beyond Implementation of eHealth

Introduction: Voters facing illness or disability are disproportionately under-represented in terms of voter turnout. Earlier research has indicated that enfranchisement of these populations may reinforce the implementation of policies improving health outcomes and equity. Due to the confluence of the coronavirus 2019 (COVID-19) pandemic and the 2020 election, we aimed to assess emergency absentee voting processes, which allow voters hospitalized after regular absentee deadlines to still obtain an absentee ballot, and election changes due to COVID-19 in all 50 states. Methods: We performed a cross-sectional study collecting 34 variables pertaining to emergency voting processes and COVID-19-related election changes, including deadlines, methods of submission for applications and ballots, and specialized services for patients. Data were obtained from, in order of priority, state boards of elections websites, poll worker manuals, application forms, and state legislation. We verified all data through direct correspondence with state boards of elections. Results: Emergency absentee voting processes are in place in 39 states, with the remaining states having universal vote-by-mail (n = 5) or extended regular absentee voting deadlines (n = 6). The emergency absentee period most commonly began within 24 hours following the normal absentee application deadline, which was often seven days before an election (n = 11). Unique aspects of emergency voting processes included patients designating an “authorized agent” to deliver their applications and ballots (n = 38), electronic ballot delivery (n = 5), and in-person teams that deliver ballots directly to patients (n = 18). Documented barriers in these processes nationwide include unavailable online information (n = 11), restrictions mandating agents to be family members (n = 7), physician affidavits or signatures (n = 9), and notary or witness signature requirements (n = 15). For the November 2020 presidential election, 12 states

Although it is well documented that adolescents and young adults (AYAs) with cancer have low participation in cancer clinical trials (CCTs), the underlying reasons are not well understood. We used the National Cancer Institute Community Oncology Research Program (NCORP) network to identify barriers and facilitators to AYA CCT enrollment, and strategies to improve enrollment at community-based and minority and/or underserved sites. We performed one-on-one semistructured qualitative interviews with stakeholders (NCORP site principle investigators, NCORP administrators, physicians involved in enrollment, lead clinical research associates or clinical research nurses, nurse navigators, regulatory research associates, patient advocates) in the AYA CCT enrollment process. NCORP sites that included high and low AYA-enrolling affiliate sites and were diverse in geography and department representation (eg, pediatrics, medical oncology) were invited to participate. All interviews were recorded and transcribed. Themes related to barriers and facilitators and strategies to improve enrollment were identified. We conducted 43 interviews across 10 NCORP sites. Eleven barriers and 13 facilitators to AYA enrollment were identified. Main barriers included perceived limited trial availability and eligibility, physician gatekeeping, lack of provider and research staff time, and financial constraints. Main facilitators and strategies to improve AYA enrollment included having a patient screening process, physician endorsement of trials, an "AYA champion" on site, and strong communication between medical and pediatric oncology. Stakeholders identified several opportunities to address barriers contributing to low AYA CCT enrollment at community-based and minority and/or underserved sites. Results of this study will inform development and implementation of targeted interventions to increase AYA CCT enrollment.

This article describes the October 2020 proceedings of the Million Hearts Cardiac Rehabilitation Think Tank: Accelerating New Care Models, convened with representatives from professional organizations, cardiac rehabilitation (CR) programs, academic institutions, federal agencies, payers, and patient representative groups. As CR delivery evolves, terminology is evolving to reflect not where activities occur (eg, center, home) but how CR is delivered: in-person synchronous, synchronous with real-time audiovisual communication (virtual), or asynchronous (remote). Patients and CR staff may interact through ≥1 delivery modes. Though new models may change how CR is delivered and who can access CR, new models should not change what is delivered-a multidisciplinary program addressing CR core components. During the coronavirus disease 2019 (COVID-19) public health emergency, Medicare issued waivers to allow virtual CR; it is unclear whether these waivers will become permanent policy post-public health emergency. Given CR underuse and disparities in delivery, new models must equitably address patient and health system contributors to disparities. Strategies for implementing new CR care models address safety, exercise prescription, monitoring, and education. The available evidence supports the efficacy and safety of new CR care models. Still, additional research should study diverse populations, impact on patient-centered outcomes, effect on long-term outcomes and health care utilization, and implementation in diverse settings. CR is evolving to include in-person synchronous, virtual, and remote modes of delivery; there is significant enthusiasm for implementing new care models and learning how new care models can broaden access to CR, improve patient outcomes, and address health inequities.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities, including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.

Background: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration. Objective: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps. Methods: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings. Results: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benef, NORDeHEALTH, Beyond Implementation of eHealth

Breathlessness is a condition we all know something about, as it is normal to get out of breath when physically overexerted. However, breathlessness may also be an abnormal manifestation commonly understood, assessed, and defined as the first vital symptom of respiratory disease-such as in asthma, bronchiectasis, chronic obstructive pulmonary disease, or pulmonary fibrosis. This dissertation is based on multi-sited ethnographic fieldwork conducted predominantly amongst support groups for people with respiratory disease in the North of England, and sheds light on how communities are formed around chronic breathlessness. By utilising (and reconceptualising) the postmodern framework of biosociality, this dissertation explores how people living with respiratory disease negotiate and incorporate different kinds of health-related knowledge in their everyday lives-explicitly in support group settings outside of the clinic. People are living longer than ever before according to the World Health Organization, and chronic conditions are now the chief causes of death globally and have surfaced as major causes of disability and functional dependency. More specifically, in the United Kingdom 115,000 people die each year of chronic respiratory disease, which makes it one of the three biggest killer disease areas in the country. These mortality figures have remained stagnant for the past decades. What is more, in the era of neoliberalism respiratory care is individualised. Public health responses now emphasise the responsibility of individuals over collective or institutional responsibility, which is predominantly enforced through self-care and by training (or activating) patients in taking their medications and monitoring their pulmonary performance. By attending to public health responses in neoliberal times where respiratory healthcare regimens are habitually individualised, this dissertation contributes to understandings of biomedical subjectivities. Explicitly, it examines ho

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Background: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration. Objective: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps. Methods: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings. Results: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benef, NORDeHEALTH, Beyond Implementation of eHealth

Background and Rationale: ICU clinicians regularly care for patients who lack capacity, an applicable advance directive, and an available surrogate decision-maker. Although there is no consensus on terminology, we refer to these patients as "unrepresented." There is considerable controversy about how to make treatment decisions for these patients, and there is significant variability in both law and clinical practice.Purpose and Objectives: This multisociety statement provides clinicians and hospital administrators with recommendations for decision-making on behalf of unrepresented patients in the critical care setting.Methods: An interprofessional, multidisciplinary expert committee developed this policy statement by using an iterative consensus process with a diverse working group representing critical care medicine, palliative care, pediatric medicine, nursing, social work, gerontology, geriatrics, patient advocacy, bioethics, philosophy, elder law, and health law.Main Results: The committee designed its policy recommendations to promote five ethical goals: 1) to protect highly vulnerable patients, 2) to demonstrate respect for persons, 3) to provide appropriate medical care, 4) to safeguard against unacceptable discrimination, and 5) to avoid undue influence of competing obligations and conflicting interests. These recommendations also are intended to strike an appropriate balance between excessive and insufficient procedural safeguards. The committee makes the following recommendations: 1) institutions should offer advance care planning to prevent patients at high risk for becoming unrepresented from meeting this definition; 2) institutions should implement strategies to determine whether seemingly unrepresented patients are actually unrepresented, including careful capacity assessments and diligent searches for potential surrogates; 3) institutions should manage decision-making for unrepresented patients using input from a diverse interprofessional, multidisci

Purpose of reviewTo define patient advocacy and engagement for modern transplant and living donation care, particularly in light of the COVID-19 pandemic, describe the patient experience when transplant advocacy and engagement are optimized, and recommend opportunities for advocacy within three key areas: (1) including the patient voice in healthcare decisions and drug development, (2) access to the best evidence-based treatments and informed decision-making, and (3) present and future care innovations and policies.Recent findingsThere are many avenues for transplant and living donation advocacy and engagement at the patient, provider, family, system, community, and policy levels. Key recommendations include the following: (1) simplifying education to be health literate, written at the appropriate reading level, culturally sensitive, and available in multiple languages and across many delivery platforms, (2) inviting transplant patients and donors to the conversation through advisory panels, consensus conferences, and new mediums like digital storytelling and patient-reported outcomes (PROs), (3) training all members of the health team to understand their role as advocates, and (4) advancing policies and programs that support the financial neutrality of living donation, and support recipients with the cost of immunosuppressive drugs. Key recommendations specific to the COVID-19 pandemic include providing up-to-date, health literate, concise information about preventing COVID-19 and accessing care including telehealth.SummaryEnhancing advocacy and engagement for transplant patients and donors along the pre-to-post transplant/donation continuum can improve clinical outcomes and quality of life generally, and more so, in light of the COVID-19 pandemic.

Background and Rationale: ICU clinicians regularly care for patients who lack capacity, an applicable advance directive, and an available surrogate decision-maker. Although there is no consensus on terminology, we refer to these patients as "unrepresented." There is considerable controversy about how to make treatment decisions for these patients, and there is significant variability in both law and clinical practice.Purpose and Objectives: This multisociety statement provides clinicians and hospital administrators with recommendations for decision-making on behalf of unrepresented patients in the critical care setting.Methods: An interprofessional, multidisciplinary expert committee developed this policy statement by using an iterative consensus process with a diverse working group representing critical care medicine, palliative care, pediatric medicine, nursing, social work, gerontology, geriatrics, patient advocacy, bioethics, philosophy, elder law, and health law.Main Results: The committee designed its policy recommendations to promote five ethical goals: 1) to protect highly vulnerable patients, 2) to demonstrate respect for persons, 3) to provide appropriate medical care, 4) to safeguard against unacceptable discrimination, and 5) to avoid undue influence of competing obligations and conflicting interests. These recommendations also are intended to strike an appropriate balance between excessive and insufficient procedural safeguards. The committee makes the following recommendations: 1) institutions should offer advance care planning to prevent patients at high risk for becoming unrepresented from meeting this definition; 2) institutions should implement strategies to determine whether seemingly unrepresented patients are actually unrepresented, including careful capacity assessments and diligent searches for potential surrogates; 3) institutions should manage decision-making for unrepresented patients using input from a diverse interprofessional, multidisci

Purpose of reviewTo define patient advocacy and engagement for modern transplant and living donation care, particularly in light of the COVID-19 pandemic, describe the patient experience when transplant advocacy and engagement are optimized, and recommend opportunities for advocacy within three key areas: (1) including the patient voice in healthcare decisions and drug development, (2) access to the best evidence-based treatments and informed decision-making, and (3) present and future care innovations and policies.Recent findingsThere are many avenues for transplant and living donation advocacy and engagement at the patient, provider, family, system, community, and policy levels. Key recommendations include the following: (1) simplifying education to be health literate, written at the appropriate reading level, culturally sensitive, and available in multiple languages and across many delivery platforms, (2) inviting transplant patients and donors to the conversation through advisory panels, consensus conferences, and new mediums like digital storytelling and patient-reported outcomes (PROs), (3) training all members of the health team to understand their role as advocates, and (4) advancing policies and programs that support the financial neutrality of living donation, and support recipients with the cost of immunosuppressive drugs. Key recommendations specific to the COVID-19 pandemic include providing up-to-date, health literate, concise information about preventing COVID-19 and accessing care including telehealth.SummaryEnhancing advocacy and engagement for transplant patients and donors along the pre-to-post transplant/donation continuum can improve clinical outcomes and quality of life generally, and more so, in light of the COVID-19 pandemic.

Since its national debut in 1987, Fresh Air with Terry Gross has been a highly acclaimed and much adored weekday magazine among public radio listeners. Each week, nearly 4.8 million people turn to Peabody Award-winning host Terry Gross for insightful conversations with the leading voices in contemporary arts and issues. The renowned program reaches a global audience, with over 620 public radio stations broadcasting Fresh Air, and 3 million podcast downloads each week. Fresh Air has broken the mold of 'talk show' by weaving together superior journalism and intimate storytelling from modern-day intellectuals, politicians and artists alike. Through probing questions and careful research, Gross's interviews are lauded for revealing a fresh perspective on cultural icons and trends. Her thorough conversations are often complemented by commentary from well-known contributors. Fresh Air is produced at WHYY-FM in Philadelphia and broadcast nationally by NPR., (1.) Nashville singer-songwriter MARGO PRICE. Rolling Stone called her 2017 album All American Made, "one of the most political country records in years." PRICE brought her guitar to the studio to perform for us. PRICE has a new live album called Perfectly Imperfect at The Ryman, featuring guest turns from Emmylou Harris, Sturgill Simpson, and Jack White. The album has been released exclusively on Bandcamp to benefit the MusicCares COVID-19 Relief Fund. (THIS INTERVIEW WAS ORIGINALLY BROADCAST 11.22.17) (2.) We remember playwright and activist LARRY KRAMER. He died on Wednesday at the age of 84. He was considered the "voice of articulate rage," railing against the government for its indifference to AIDS. His plays include, his 1985 autobiographical play "The Normal Heart," and "The Destiny of Me." KRAMER founded the AIDS Coalition to Unleash Power (ACT-UP) and the Gay Men's Health Crisis (GMHC). Terry spoke with him about being a writer, an activist, and a person with HIV. (THIS INTERVIEW WAS ORIGINALLY BROADCAST 12.1.92)

PurposeParticipation in cancer support groups can provide a sense of community and may better prepare patients for interactions with their health care team. Online interactions may overcome some barriers to in-person support group participation. #BCSM (breast cancer social media), the first cancer support community established on Twitter, was founded in 2011 by two breast cancer survivors. The aims of this study are to describe the growth and changes in this community and to discuss future directions and lessons that may apply to other online support communities.MethodsSymplur Signals was used to obtain all #BCSM Twitter data from January 1, 2011, to January 1, 2020 (00:00:00 Coordinated Universal Time for both). Hashtag use by selected stakeholder groups, user locations, weekly tweet chat activity, and topics were determined.ResultsFrom year 1 (2011) to year 9 (2019), tweets using the #BCSM hashtag increased by 424%. Tweets by patient advocates increased by 226%, with a peak in 2016. Impressions, a measure of potential tweet views, by patient advocates increased by 517%. Tweets by doctors and nonphysician health care professionals increased by 693%. Weekly #BCSM tweet chat activity peaked in 2013, increasing by 58.1% from 2011. Chat topics have included survivorship, metastatic breast cancer, death and dying, advocacy, and highlights from national breast cancer meetings.Conclusions#BCSM has experienced tremendous growth since 2011, although there are challenges to community sustainability. The weekly chats, as well as discussions utilizing the hashtag but occurring outside of scheduled chat times, serve as an important resource for patients and offer physicians an opportunity to both support and learn from patients.

Clear communication with patients upon emergency department (ED) discharge is important for patient safety during the transition to outpatient care. Over one-third of patients are discharged from the ED with diagnostic uncertainty, yet there is no established approach for effective discharge communication in this scenario. From 2017 to 2019, the authors developed the Uncertainty Communication Checklist for use in simulation-based training and assessment of emergency physician communication skills when discharging patients with diagnostic uncertainty. This development process followed the established 12-step Checklist Development Checklist framework and integrated patient feedback into 6 of the 12 steps. Patient input was included as it has potential to improve patient-centeredness of checklists related to assessment of clinical performance. Focus group patient participants from 2 clinical sites were included: Thomas Jefferson University Hospital, Philadelphia, PA, and Northwestern University Hospital, Chicago, Illinois. The authors developed a preliminary instrument based on existing checklists, clinical experience, literature review, and input from an expert panel comprising health care professionals and patient advocates. They then refined the instrument based on feedback from 2 waves of patient focus groups, resulting in a final 21-item checklist. The checklist items assess if uncertainty was addressed in each step of the discharge communication, including the following major categories: introduction, test results/ED summary, no/uncertain diagnosis, next steps/follow-up, home care, reasons to return, and general communication skills. Patient input influenced both what items were included and the wording of items in the final checklist. This patient-centered, systematic approach to checklist development is built upon the rigor of the Checklist Development Checklist and provides an illustration of how to integrate patient feedback into the design of assessment tool

The global nephrology community recognizes the need for a cohesive strategy to address the growing problem of end-stage kidney disease (ESKD). In March 2018, the International Society of Nephrology hosted a summit on integrated ESKD care, including 92 individuals from around the globe with diverse expertise and professional backgrounds. The attendees were from 41 countries, including 16 participants from 11 low- and lower-middle-income countries. The purpose was to develop a strategic plan to improve worldwide access to integrated ESKD care, by identifying and prioritizing key activities across 8 themes: (i) estimates of ESKD burden and treatment coverage, (ii) advocacy, (iii) education and training/workforce, (iv) financing/funding models, (v) ethics, (vi) dialysis, (vii) transplantation, and (viii) conservative care. Action plans with prioritized lists of goals, activities, and key deliverables, and an overarching performance framework were developed for each theme. Examples of these key deliverables include improved data availability, integration of core registry measures and analysis to inform development of health care policy; a framework for advocacy; improved and continued stakeholder engagement; improved workforce training; equitable, efficient, and cost-effective funding models; greater understanding and greater application of ethical principles in practice and policy; definition and application of standards for safe and sustainable dialysis treatment and a set of measurable quality parameters; and integration of dialysis, transplantation, and comprehensive conservative care as ESKD treatment options within the context of overall health priorities. Intended users of the action plans include clinicians, patients and their families, scientists, industry partners, government decision makers, and advocacy organizations. Implementation of this integrated and comprehensive plan is intended to improve quality and access to care and thereby reduce serious health-re

Background/Purpose: The Addressing Lupus Pillars for Health Advancement (ALPHA) Project is a global consensus initiative seeking to identify and prioritize top barriers in lupus impacting diagnosis, care, treatment and research, with the goal of improving rates of accurate and timely diagnosis, increasing access to care, and improving short and long-term patient outcomes. This abstract presents Phase I consensus building and prioritization process methodology, and findings of initial project activities. Method(s): The Lupus Foundation of America and its research partner, Tufts Center for the Study of Drug Development, assembled a Global Advisory Committee (GAC) of 13 lupus experts across 5 countries to provide input and support throughout the effort. A mixed methods approach is being used to elicit concepts seen as major barriers in lupus diagnosis, care, treatment and research, then consolidate and confirm those selected as most urgent. First, a brief web survey was distributed to each GAC member to begin concept elicitation. Identified items were then ranked during a GAC meeting, and will be presented through an in-depth semi-structured interview among 22 stakeholders representing industry, academia, regulatory bodies, patient/advocacy groups, clinicians, and researchers. Finally, an online survey among 200-500 individuals will further validate and demonstrate consensus around top barriers in a broader audience for this Phase I initiative. Result(s): GAC member response rate was 85% for the concept elicitation exercise. Findings are shown in Figure 1. 15 main concepts were identified, with substantial discussion on lupus heterogeneity, lupus as a spectrum of diseases, and the importance of biomarkers in trial design and understanding of the disease. Categorization and prioritization of these concepts is seen in Figure 2. Notably, all GAC members cited issues surrounding disease definition and diagnosis as the most significant burden in lupus. Half also cited clini

Background/Purpose: The Addressing Lupus Pillars for Health Advancement (ALPHA) Project is a global consensus initiative seeking to identify and prioritize top barriers in lupus impacting diagnosis, care, treatment and research, with the goal of improving rates of accurate and timely diagnosis, increasing access to care, and improving short and long-term patient outcomes. This abstract presents Phase I consensus building and prioritization process methodology, and findings of initial project activities. Method(s): The Lupus Foundation of America and its research partner, Tufts Center for the Study of Drug Development, assembled a Global Advisory Committee (GAC) of 13 lupus experts across 5 countries to provide input and support throughout the effort. A mixed methods approach is being used to elicit concepts seen as major barriers in lupus diagnosis, care, treatment and research, then consolidate and confirm those selected as most urgent. First, a brief web survey was distributed to each GAC member to begin concept elicitation. Identified items were then ranked during a GAC meeting, and will be presented through an in-depth semi-structured interview among 22 stakeholders representing industry, academia, regulatory bodies, patient/advocacy groups, clinicians, and researchers. Finally, an online survey among 200-500 individuals will further validate and demonstrate consensus around top barriers in a broader audience for this Phase I initiative. Result(s): GAC member response rate was 85% for the concept elicitation exercise. Findings are shown in Figure 1. 15 main concepts were identified, with substantial discussion on lupus heterogeneity, lupus as a spectrum of diseases, and the importance of biomarkers in trial design and understanding of the disease. Categorization and prioritization of these concepts is seen in Figure 2. Notably, all GAC members cited issues surrounding disease definition and diagnosis as the most significant burden in lupus. Half also cited clini

The global nephrology community recognizes the need for a cohesive strategy to address the growing problem of end-stage kidney disease (ESKD). In March 2018, the International Society of Nephrology hosted a summit on integrated ESKD care, including 92 individuals from around the globe with diverse expertise and professional backgrounds. The attendees were from 41 countries, including 16 participants from 11 low- and lower-middle-income countries. The purpose was to develop a strategic plan to improve worldwide access to integrated ESKD care, by identifying and prioritizing key activities across 8 themes: (i) estimates of ESKD burden and treatment coverage, (ii) advocacy, (iii) education and training/workforce, (iv) financing/funding models, (v) ethics, (vi) dialysis, (vii) transplantation, and (viii) conservative care. Action plans with prioritized lists of goals, activities, and key deliverables, and an overarching performance framework were developed for each theme. Examples of these key deliverables include improved data availability, integration of core registry measures and analysis to inform development of health care policy; a framework for advocacy; improved and continued stakeholder engagement; improved workforce training; equitable, efficient, and cost-effective funding models; greater understanding and greater application of ethical principles in practice and policy; definition and application of standards for safe and sustainable dialysis treatment and a set of measurable quality parameters; and integration of dialysis, transplantation, and comprehensive conservative care as ESKD treatment options within the context of overall health priorities. Intended users of the action plans include clinicians, patients and their families, scientists, industry partners, government decision makers, and advocacy organizations. Implementation of this integrated and comprehensive plan is intended to improve quality and access to care and thereby reduce serious health-re

The decision-making process on behalf of unrepresented adults (ie, those who lack capacity to make medical decisions and have no identifiable surrogate) is at risk for not incorporating their interests, raising ethical concerns. We performed semistructured interviews with key stakeholders across multiple sectors in an urban county who participate in the care of or decision-making process for unrepresented adults. This included a safety net healthcare system, social services, and legal services. Participants were healthcare, social service, and legal professionals who worked with unrepresented adults (n = 25). Our interview questions explored the current process for proxy decision making in cases of unrepresented adults and potential alternatives. We recorded, transcribed, and analyzed interviews using the constant comparative method to identify major themes related to ethical challenges if they were raised. Participants grappled with multiple ethical challenges around the care of unrepresented adults. Themes described by participants were: (1) prioritizing autonomy; (2) varying safety thresholds; (3) distributing resources fairly; and (4) taking a moral toll on stakeholders. In conclusion, all stakeholders identified ethical challenges in caring for unrepresented adults. An applied ethical framework that takes these dilemmas into account could improve ethical practice for unrepresented adults and lessen the emotional toll on stakeholders. J Am Geriatr Soc 67:1724-1729, 2019.

Multiple system atrophy (MSA) is a rare neurodegenerative disorder with substantial knowledge gaps despite recent gains in basic and clinical research. In order to make further advances, concerted international collaboration is vital. In 2014, an international meeting involving leaders in the field and MSA advocacy groups was convened in Las Vegas, Nevada, to identify critical research areas where consensus and progress was needed to improve understanding, diagnosis, and treatment of the disease. Eight topic areas were defined: pathogenesis, preclinical modeling, target identification, endophenotyping, clinical measures, imaging biomarkers, nonimaging biomarkers, treatments/trial designs, and patient advocacy. For each topic area, an expert served as a working group chair and each working group developed priority-ranked research recommendations with associated timelines and pathways to reach the intended goals. In this report, each groups' recommendations are provided.

Background Ensuring donor wellbeing warrants ongoing monitoring after living kidney donation. However, there is considerable variability in donor follow-up processes, including information provided to donors regarding self-care. Loss to follow-up is common, suggesting that the aims and benefits of monitoring and follow-up may not be apparent. We aimed to describe the experiences and expectations of living kidney donors regarding follow-up and self-care after donation. Methods Participants from 3 transplant centers in Australia and Canada participated in 14 focus groups (n = 123). Transcripts were analyzed thematically. Results We identified 4 themes: Lacking identification as a patient (invincibility and confidence in health, immediate return to normality, avoid burdening specialty services, redundancy of specialist attention, unnecessary travel), empowerment for health (self-preservation for devastating consequences, self-advocacy and education, needing lifestyle advice, tracking own results), safety net and reassurance (availability of psychosocial support, confidence in kidney-focused care, continuity and rapport, and access to waitlist priority), and neglect and inattention (unrecognized ongoing debilitations, primary focus on recipient, hospital abandonment, overlooking individual priorities, disconnected from system, coping with dual roles, and lacking support for financial consequences). Conclusions Living kidney donors who felt well and confident about their health regarded specialist follow-up as largely unnecessary. However, some felt they did not receive adequate medical attention, were prematurely detached from the health system, or held unresolved anxieties about the consequences of their decision to donate. Ongoing access to healthcare, psychosocial support, and education may reassure donors that any risks to their health are minimized.Copyright © 2017 Wolters Kluwer Health, Inc.

Background Ensuring donor wellbeing warrants ongoing monitoring after living kidney donation. However, there is considerable variability in donor follow-up processes, including information provided to donors regarding self-care. Loss to follow-up is common, suggesting that the aims and benefits of monitoring and follow-up may not be apparent. We aimed to describe the experiences and expectations of living kidney donors regarding follow-up and self-care after donation. Methods Participants from 3 transplant centers in Australia and Canada participated in 14 focus groups (n = 123). Transcripts were analyzed thematically. Results We identified 4 themes: Lacking identification as a patient (invincibility and confidence in health, immediate return to normality, avoid burdening specialty services, redundancy of specialist attention, unnecessary travel), empowerment for health (self-preservation for devastating consequences, self-advocacy and education, needing lifestyle advice, tracking own results), safety net and reassurance (availability of psychosocial support, confidence in kidney-focused care, continuity and rapport, and access to waitlist priority), and neglect and inattention (unrecognized ongoing debilitations, primary focus on recipient, hospital abandonment, overlooking individual priorities, disconnected from system, coping with dual roles, and lacking support for financial consequences). Conclusions Living kidney donors who felt well and confident about their health regarded specialist follow-up as largely unnecessary. However, some felt they did not receive adequate medical attention, were prematurely detached from the health system, or held unresolved anxieties about the consequences of their decision to donate. Ongoing access to healthcare, psychosocial support, and education may reassure donors that any risks to their health are minimized.Copyright © 2017 Wolters Kluwer Health, Inc.

The exponential growth of young talented women choosing science and medicine as their professional career over the past decade is substantial. Currently, more than half of the Australian medical doctoral graduates and early career researchers are comprised of women, but less than 20% of all academic professorial staff are women. The loss of female talent in the hierarchical ladder of Australian academia is a considerable waste of government investment, productivity, and scientific innovation. Gender disparity in the professional workforce composition is even more striking within the field of transplantation. Women are grossly underrepresented in leadership roles, with currently no female heads of unit in any of the Australian and New Zealand transplanting centers. At the same time, there is also gender segregation with a greater concentration of women in lower-status academic position compared with their male counterparts. Given the extent and magnitude of the disparity, the Women in Transplantation Committee, a subcommittee of The Transplantation Society of Australia and New Zealand established a workshop comprising 8 female clinicians/scientists in transplantation. The key objectives were to (i) identify potential gender equity issues within the transplantation workforce; (ii) devise and implement potential strategies and interventions to address some of these challenges at a societal level; (iii) set realistic and achievable goals to enhance and facility gender equality, equity, and diversity in transplantation.Copyright © 2017 Wolters Kluwer Health, Inc.

This essay examines the fundamental role of veterinarians in companion animal practice by developing the idea of veterinarians as strong advocates for their nonhuman animal patients. While the practitioner-patient relationship has been explored extensively in medical ethics, the relation between practitioner and animal patient has received relatively less attention in the expanding but still young field of veterinary ethics. Over recent decades, social and professional ethical perspectives on human-animal relationships have undergone major change. Today, the essential role of veterinarians is not entirely clear. Furthermore, veterinarians routinely face pressure, often insidious, to refrain from pursuing their patients’ vital interests. In exploring the concept of strong patient advocacy, this essay investigates the increasingly common suggestion that veterinarians have ‘primary obligation’ and ‘first allegiance’ to their animal patients rather than to other parties, such as their clients or employers. The related concept of a fiduciary duty, which is sometimes encountered in medical ethics, is similarly explored as it applies to companion animal practice. The resultant idea of a strong patient advocate places companion animal veterinarians conceptually and ethically close to human health professionals, not least pediatricians.

Multiple system atrophy (MSA) is a rare neurodegenerative disorder with substantial knowledge gaps despite recent gains in basic and clinical research. In order to make further advances, concerted international collaboration is vital. In 2014, an international meeting involving leaders in the field and MSA advocacy groups was convened in Las Vegas, Nevada, to identify critical research areas where consensus and progress was needed to improve understanding, diagnosis, and treatment of the disease. Eight topic areas were defined: pathogenesis, preclinical modeling, target identification, endophenotyping, clinical measures, imaging biomarkers, nonimaging biomarkers, treatments/trial designs, and patient advocacy. For each topic area, an expert served as a working group chair and each working group developed priority-ranked research recommendations with associated timelines and pathways to reach the intended goals. In this report, each groups' recommendations are provided.

Purpose Empowerment in patients can lead to a higher participation in care and self-management skills. However, there are a limited number of high-quality instruments to assess empowerment and its various dimensions in young persons. The aim was to develop and assess the psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES). Methods The GYPES is a 15-item questionnaire designed to measure patient empowerment in young persons with chronic conditions. Three studies were conducted to evaluate the psychometric properties of the scale. Studies I and II assessed face, content and factorial validity, as well as responsiveness and reliability in young persons with congenital heart disease and diabetes. After these studies problematic items were identified and reworded and the final version of the GYPES was tested in young persons with diabetes in study III. Results The content and face validity of the scale was confirmed in study I. Confirmatory factor analyses (CFA) in study II supported the five-factor structure of the GYPES. However, one item had a low factor loading. The scale was revised and evaluated in study III. CFA of this version supported adequate model fit with factor loadings ranging from 0.385–0.941. A second-order model had an adequate fit to the data. Cronbach’s alpha for the overall scale was 0.858 and for each subscale, alphas range from 0.609–0.858. Conclusions GYPES was developed to measure patient empowerment in young persons with chronic conditions. Preliminary evidence supports that the GYPES may be a valid and reliable tool for assessing young persons’ empowerment.

ObjectivesTo investigate correctional healthcare providers' knowledge of and experience with advance care planning (ACP), their perspectives on barriers to ACP in correctional settings, and how to overcome those barriers.DesignQualitative.SettingFour prisons in 2 states and 1 large city jail in a third state.ParticipantsCorrectional healthcare providers (e.g., physicians, nurses, social workers; N=24).ResultsParticipants demonstrated low baseline ACP knowledge; 85% reported familiarity with ACP, but only 42% provided accurate definitions. Fundamental misconceptions included the belief that providers provided ACP without soliciting inmate input. Multiple ACP barriers were identified, many of which are unique to prison and jail facilities, including provider uncertainty about the legal validity of ACP documents in prison or jail, inmate mistrust of the correctional healthcare system, inmates' isolation from family and friends, and institutional policies that restrict use of ACP. Clinicians' suggestions for overcoming those barriers included ACP training for clinicians, creating psychosocial support opportunities for inmates, revising policies that limit ACP, and systematically integrating ACP into healthcare practice.ConclusionDespite an increasing number of older and seriously ill individuals in prisons and jails, many correctional healthcare providers lack knowledge about ACP. In addition to ACP barriers found in the community, there are unique barriers to ACP in prisons and jails. Future research and policy innovation are needed to develop clinical training programs and identify ACP implementation strategies for use in correctional settings. J Am Geriatr Soc 66:2382-2388, 2018.

Objectives: The purpose of this study was to identify the predictors of the practice of health advocacy by nurses in the hospital envi-ronment. Materials and methods: This is a quantitative, cross-sectional analytical study carried out with 157 nurses from two hospitals in southern Brazil, one public and one philanthropic. Data collection was done between September and October 2015. The Brazilian version of the Protective Nursing Advocacy Scale, consisting of 20 items, arranged in five constructs, was the instrument was used. Elements of descriptive statistics, the Pearson correlation and linear regression analysis were used to examine the data. Results: The study showed a moderate association between facilitators of the practice of advocacy and perceptions that favor its exercise. The dimension "facilitators of the practice of advocacy" obtained the highest average with the instrument and was the main legal predictor in health in the hospital context, capable of inspiring in nurses the sensitivity and desire to advocate. Conclusions: The nurse has a feeling of responsibility to make sure equipment continues to function properly and to handle conflicting questions when offering security to patients, even in the face of resistance originating in the workplace., Objetivos: identificar os preditores do exercício da advocacia em saúde por enfermeiros no contexto hospitalar. Materiais e mé-todo: estudo quantitativo, transversal analítico, realizado com 157 enfermeiros de duas instituições hospitalares do sul do Brasil, uma pública e uma filantrópica. A coleta de dados foi realizada entre os meses de setembro e outubro de 2015. Foi utilizado o instrumento Pro-tective Nursing Advocacy Scale — versão brasileira, constituído por 20 itens, dispostos em cinco constructos. Para a análise dos dados, utilizou-se de elementos da estatística descritiva, da correlação de Pearson e da análise de regressão linear. Resultados: os resultados evidenciaram moderada associação entre facilitadores ao exercício da advocacia e percepções que favorecem seu exercício. A dimensão “facilitadores ao exercício da advocacia” obteve a maior média do instrumento e foi o principal preditor da advocacia em saúde no contex-to hospitalar, capaz de deflagrar nos enfermeiros a sensibilidade e o desejo em advogar. Conclusões: o sentimento de responsabilidade por parte dos enfermeiros em manter o bom funcionamento da equipe e gerir questões conflitantes eleva a necessidade em oferecer segurança aos pacientes, mesmo que diante de resistências oriundas do local de trabalho., Objetivos: identificar los predictores del ejercicio de la abogacía en salud por enfermeros en el contexto hospitalario. Materiales y método: estudio cuantitativo, transversal analítico, realizado con 157 enfermeros de dos instituciones hospitalarias del sur de Brasil, una pública y una filantrópica. Se realizó la recolección de datos entre los meses de septiembre y octubre del 2015. Se utilizó el instrumento Protective Nursing Advocacy Scale — versión brasileña, constituido por 20 ítems, dispuestos en cinco constructos. Para el análisis de los datos, se utilizaron elementos de la estadística descriptiva, la correlación de Pearson y el análisis de regresión lineal. Resultados: los resultados evidenciaron moderada asociación entre facilitadores al ejercicio de la abogacía y percepciones que favorecen su ejercicio. La dimensión “facilitadores al ejercicio de la abogacía” obtuvo el mayor promedio del instrumento y fue el principal predictor jurídico en salud en el contexto hospitalario, capaz de provocar en los enfermeros la sensibilidad y el deseo en abogar. Conclusiones: el sentimiento de responsabilidad por parte de los enfermeros en mantener el buen funcionamiento del equipo y manejar cuestiones conflictivas en ofrecer seguridad a los pacientes, aun ante resistencias oriundas del local de trabajo.

Purpose Empowerment in patients can lead to a higher participation in care and self-management skills. However, there are a limited number of high-quality instruments to assess empowerment and its various dimensions in young persons. The aim was to develop and assess the psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES). Methods The GYPES is a 15-item questionnaire designed to measure patient empowerment in young persons with chronic conditions. Three studies were conducted to evaluate the psychometric properties of the scale. Studies I and II assessed face, content and factorial validity, as well as responsiveness and reliability in young persons with congenital heart disease and diabetes. After these studies problematic items were identified and reworded and the final version of the GYPES was tested in young persons with diabetes in study III. Results The content and face validity of the scale was confirmed in study I. Confirmatory factor analyses (CFA) in study II supported the five-factor structure of the GYPES. However, one item had a low factor loading. The scale was revised and evaluated in study III. CFA of this version supported adequate model fit with factor loadings ranging from 0.385–0.941. A second-order model had an adequate fit to the data. Cronbach’s alpha for the overall scale was 0.858 and for each subscale, alphas range from 0.609–0.858. Conclusions GYPES was developed to measure patient empowerment in young persons with chronic conditions. Preliminary evidence supports that the GYPES may be a valid and reliable tool for assessing young persons’ empowerment.

Since the 1990s, historians of medicine have pointed to a change in the status and self-image of patients in the West. Patients, it is claimed, have gone from being passively dependent on medicine to active consumers of health care. However, this narrative does not consider the fact that Western countries differ a great deal in terms of access to health care, access to alternative treatments and the role and status assigned to formal expertise in society at large. This study aims to contribute to a deeper and more historically nuanced understanding of the transformation of the patient into a consumer. Through an analysis of the Swedish THX movement - a patient movement trying to achieve legal access to, and formal approval of, the controversial anti-cancer drug THX in the 1970s - the study shows how the agenda and demands of the THX patients mirrored the specific Swedish settings in which they were articulated. THX patients did not wish to be regarded as consumers or clients. On the contrary, their arguments were firmly rooted in a collective identity as "the people" who expected the state and politicians to meet their needs. They emphasized their collective experience as evidence of the efficiency of THX and pointed to the popularity of THX treatment, thereby rejecting the results of several scientific trials initiated by the medical authorities. Doing so, THX patients made use of the culturally resonant frame of collectivity in Sweden at the time, as well as of a widespread belief that the medical authorities were corrupt and insensitive to the needs of ordinary people.

AIMS AND OBJECTIVES: To examine the extent to which the findings from an integrative review regarding perioperative patient advocacy could be empirically supported, and to describe Swedish registered nurse anaesthetists' patient advocacy actions and interactions during the perioperative period. BACKGROUND: Patient advocacy is practiced by various health care professionals in promoting the well-being of patients. It is complex, and in a general health care context it has been described as supporting the patients both physiologically and psychologically. During general anaesthesia, the patient enters an unconscious state, and the registered nurse anaesthetist safeguards patient privacy and autonomy. DESIGN: Qualitative descriptive. METHODS: Individual, nonparticipant observations (n=16) with eight registered nurse anaesthetists. The observer followed the nurses unobtrusively by shadowing them during the perioperative phase on two separate occasions. The analysis was conducted with a directed content analysis in the light of four predetermined categories, identified in a previous integrative review of patient advocacy in the perioperative setting: protecting, value preserving, supporting, and informing. RESULTS: The predetermined categories were empirically supported. They were further refined by identifying 11 new subcategories leading to a conceptual extension of the theoretical frame. The registered nurse anaesthetists interacted with the patient and all members of the surgical team when practicing perioperative patient advocacy and the actions were mostly initiated by the registered nurse anaesthetists themselves. CONCLUSIONS: The findings offer a new insight into the registered nurse anaesthetist's professional role. The observations deepen the understanding of the registered nurse anaesthetists' perioperative patient advocacy actions, and can contribute to a more reflective and theory-oriented view of practice. RELEVANCE TO CLINICAL PRACTICE: The results from thi, Funding Agencies:Örebro Universitet Research Committee at Region Örebro County

Federally Qualified Health Centers--commonly referred to as Community Health Centers (CHCs)--serve as critical safety net providers for those who are uninsured or who may become uninsured. This policy brief reports the findings from the Remaining Uninsured Access to Community Health Centers (REACH) research project, which sought to identify the impact of the Affordable Care Act (ACA) on the ability of CHCs to serve the remaining uninsured. We examined strategies undertaken by CHCs in four states to reinforce the local safety net through partnerships, improvements to the local health system, and advocacy. With the uncertainties about whether Medicaid expansion will be continued or will be handed over to the states with limited oversight, partnerships both among CHCs and between CHCs and others in the health care system and beyond may become even more important.

Federally Qualified Health Centers--commonly referred to as Community Health Centers (CHCs)--serve as critical safety net providers for those who are uninsured or who may become uninsured. This policy brief reports the findings from the Remaining Uninsured Access to Community Health Centers (REACH) research project, which sought to identify the impact of the Affordable Care Act (ACA) on the ability of CHCs to serve the remaining uninsured. We examined strategies undertaken by CHCs in four states to reinforce the local safety net through partnerships, improvements to the local health system, and advocacy. With the uncertainties about whether Medicaid expansion will be continued or will be handed over to the states with limited oversight, partnerships both among CHCs and between CHCs and others in the health care system and beyond may become even more important.

Background and objectives Comprehensive evaluations are required to safeguard voluntarism and minimize harm to living kidney donors. This process is lengthy, invasive, and emotionally challenging, with up to one fifth of potential donors opting out. We aimed to describe donors' experiences of the evaluation process. Design, setting, participants, & measurements We conducted 14 focus groups involving 123 kidney donors who completed donation from three transplant centers (Australia and Canada). Transcripts were analyzed thematically. Results We identified six themes reflecting donors' experiences of evaluation. The themes that related to perseverance included emotional investment (prioritizing the recipient's health, desperation for a normal life, protecting eligibility, shame of disappointing others, and overcoming opposition), undeterred by low risks (medical confidence and protection, worthwhile gamble, inherent invincibility, and normalizing risks), and mental preparation (avoiding regret, resolving decisional ambivalence, and managing expectations of recovery). The challenges included underlying fears for health (processing alarming information, unsettling uncertainty, and preoperative panic), system shortfalls (self-advocacy in driving the process, stressful urgency, inconsistent framing of safety, unnerving bodily scrutiny, questioning risk information, and draining finances); and lifestyle interference (living in limbo, onerous lifestyle disruption, and valuing flexibility). Conclusions Previous donors described an emotional investment in donating and determination to protect their eligibility, despite having concerns for their health, financial and lifestyle disruption, and opposition from their family or community. Our findings suggest the need to prepare donors for surgery and recovery, minimize anxiety and lifestyle burdens, ensure that donors feel comfortable expressing their fears and concerns, reduce unnecessary delays, and make explicit the responsibil

Introduction: The integration of patient and caregiver input into guideline development can help to ensure that clinical care addresses patient expectations, priorities, and needs. We aimed to identify topics and outcomes salient to patients and caregivers for inclusion in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guideline on the screening and management of infectious microorganisms in hemodialysis units. Method(s): A facilitated workshop was conducted with 11 participants (patients [n = 8], caregivers [n = 3]). Participants identified and discussed potential topics for inclusion in the guidelines, which were compared to those developed by the guideline working group. The workshop transcript was thematically analyzed to identify and describe the reasons underpinning their priorities. Finding(s): Patients and caregivers identified a range of topics already covered by the scope of the proposed guidelines and also suggested additional topics: privacy and confidentiality, psychosocial care during/after disease notification, quality of transportation, psychosocial treatment of patients in isolation, patient/caregiver education and engagement, and patient advocacy. Five themes characterized discussion and underpinned their choices: shock and vulnerability, burden of isolation, fear of infection, respect for privacy and confidentiality, and confusion over procedural inconsistencies. Discussion(s): Patients and caregivers emphasized the need for guidelines to address patient education and engagement, and the psychosocial implications of communication and provision of care in the context of infectious microorganisms in hemodialysis units. Integrating patient and caregiver perspectives can help to improve the relevance of guidelines to enhance quality of care, patient experiences, and health and psychosocial outcomes.Copyright © 2016 International Society for Hemodialysis