Social determinants of health as barriers to care for vasculitis: perspectives of patients and healthcare providers.

OBJECTIVE: This study examined patient and healthcare provider (HCP) perspectives on the impact of unmet social needs on healthcare barriers for patients with vasculitis. METHODS: Two surveys were developed to gather perspectives from patients with vasculitis, and HCPs specializing in vasculitis care. The patient survey also included a 20-question social needs assessment. The data were analyzed using descriptive statistics. RESULTS: One hundred patients and 31 HCPs completed the surveys between September 2022 and June 2023. Fifty-six percent of patients reported unmet social needs, with poor social and mental health (30%) being the most common. Sixty-three percent of patients with vasculitis perceived unmet social need(s) as barriers to healthcare access. Financial insecurity (30%), poor mental health (29%), and poor health knowledge (25%) were the most common barriers identified. Overall, HCPs perceived SDOH have a greater impact on healthcare access than the patients surveyed. Most patients (82%) and HCPs (90%) believed rheumatologists should help in the management of SDOH, specifically health knowledge and mental health. Few HCPs (10%) felt well-positioned to address patients' mental health. Suggested interventions that address social needs and improve healthcare access included referrals to community-based resources, providing educational materials, and virtual visits. CONCLUSION: Through patient and HCP perspectives, the impact of SDOH on healthcare access for patients with vasculitis was explored. Understanding the positive experiences and challenges faced by patients is crucial for developing targeted interventions to enhance healthcare access. These findings underscore the importance of ongoing efforts to improve the healthcare experience for patients with vasculitis. Key Points • The impact of unmet social needs on healthcare access for patients with vasculitis, illustrates the complex relationship between SDOH and healthcare outcomes. • Unmet social needs among patients with vasculitis, included poor social and mental health, financial and food insecurity, and a lack of health literacy, which may exacerbate challenges leading to poor health outcomes. • The differences in perspectives between patients and healthcare providers regarding the impact of certain SDOH on healthcare access, necessitates the importance of co-production in the development of interventions to improve healthcare delivery. • The importance of patient-centered care and tailored solutions was highlighted by the need for various interventions to address social needs and improve healthcare access, such as referrals to community-based resources, educational materials, and interprofessional collaboration.

COVID-19 Vaccination Perceptions in Patients With Rheumatic Disease: A Cross-Sectional Online Survey.

OBJECTIVE: To identify the factors that affect coronavirus disease 2019 (COVID-19) vaccine decision making among individuals diagnosed with a rheumatologic condition, given that previous international studies have demonstrated that a significant proportion of patients with rheumatic disease (RD) are vaccine hesitant. METHODS: This cross-sectional study involved an online survey with adult patients with RD from the Kaye Edmonton Clinic Rheumatology Clinic between June and August 2021. Quantitative results were descriptively analyzed, whereas qualitative thematic analysis was conducted for open-ended responses. RESULTS: The survey had a response rate of 70.9% (N = 231). Regarding COVID-19 vaccines, patients with RD were most concerned about the possible effect of vaccination on their rheumatic condition (45.2%) and about vaccine effectiveness (45.1%). Most patients had discussed COVID-19 vaccination (75.9%) and its risks and benefits (66.1%) with their medical team, and 83.6% of respondents were confident in the information provided. Patients' perceptions of the government's role in handling the COVID-19 pandemic varied: 33% reported that they found government-instituted public health measures effective. Surprisingly, 9.7% of patients with RD still reported concerns that they could develop COVID-19 from an approved COVID-19 vaccine. CONCLUSION: This study describes factors implicated in COVID-19 vaccine decision making among patients with RD. Three important themes included possible adverse effects of the vaccine on RD control, reduced vaccine efficacy because of RD/treatment, and risk of contracting SARS-CoV-2 from the COVID-19 vaccine. Knowledge from this study can assist healthcare providers in looking after patients with RD to initiate discussions with patients to share evidence-based vaccine information and assist with informed decision making.

Enabling patient-centred policy for electronic consultations: A qualitative analysis of discussions from a stakeholder meeting.

INTRODUCTION: To support the expansion of a successful regional electronic consultation (eConsult) service, we hosted a full-day national eConsult Policy Think Tank, connecting health-services researchers, clinicians, patients and policymakers to discuss policy considerations related to eConsult. In this paper, we assess the discussion arising from the Think Tank to identify and understand the policy enablers and barriers to the national spread and scale of eConsult services across Canada. METHODS: We conducted a constant comparative thematic analysis of stakeholder discussions captured during the Think Tank held in Ottawa, Canada, on 5 December 2016. Forty-seven participants attended and debated the following topic areas: (a) delivery of services and standards; (b) payment considerations; and (c) equitable access. The meeting was recorded, and verbatim transcripts were analysed using qualitative approaches. RESULTS: We identified four themes affecting spread and scale of eConsult innovation from a policy perspective: (a) patient-centredness; (b) value; (c) regulation; and (d) considerations for spread and scale. Patient-centredness was viewed as a foundational principle upon which policy shifts should be guided. Active participation of patient partners transitioned the discussions and resulting recommendations from provider-centred to patient-centred thinking around the relevant policy issues, explicitly demonstrating the importance of patient involvement in healthcare policy decision making. DISCUSSION: eConsult was viewed as a high-value, disruptive innovation with great potential to transform access to specialists in Canada. A patient-centred approach to policy change (and not just healthcare delivery) was identified as a novel yet critical enabler to the scale and spread of eConsult across Canada.

The Provincial Patient and Family Group (PFG) for Alberta Health Services Transforms How Care is Planned and Delivered: A Decade of Experience.

Although many health care organizations made significant headway in building relationships with patients and families at the point of care, there continues to be opportunities to partner with them at the system level. One such opportunity is the Patient and Family Advisory Group (PFG) at Alberta Health Services (AHS). Developed 10 years ago as a formal group of patient and family volunteers, PFG has provided advice on over 350 key organization initiatives, including the Patient First Strategy and the Family Visitation policies and guidelines. Through the formal partnership with PFG and its members who bring their lived experiences with the health system and its services, AHS has demonstrated its commitment to designing and improving services with the user in mind. Now entering its second decade, PFG, supported by AHS leadership, continues to explore new strategic approaches with internal and external stakeholders to reinforce the importance of Patient and Family-Centered Care.

Attitudes, behaviours and barriers to public health measures for COVID-19: a survey to inform public health messaging.

BACKGROUND: Public support of public health measures including physical distancing, masking, staying home while sick, avoiding crowded indoor spaces and contact tracing/exposure notification applications remains critical for reducing spread of COVID-19. The aim of our work was to understand current behaviours and attitudes towards public health measures as well as barriers individuals face in following public health measures. We also sought to identify attitudes persons have regarding a COVID-19 vaccine and reasons why they may not accept a vaccine. METHODS: A cross-sectional online survey was conducted in August 2020, in Alberta, Canada in persons 18 years and older. This survey evaluated current behaviours, barriers and attitudes towards public health measures and a COVID-19 vaccine. Cluster analysis was used to identify key patterns that summarize data variations among observations. RESULTS: Of the 60 total respondents, the majority of persons were always or often physically distancing (73%), masking (65%) and staying home while sick (67%). Bars/pubs/lounges or nightclubs were visited rarely or never by 63% of respondents. Persons identified staying home while sick to provide the highest benefit (83%) in reducing spread of COVID-19. There were a large proportion of persons who had not downloaded or used a contact tracing/exposure notification app (77%) and who would not receive a COVID-19 vaccine when available (20%) or were unsure (12%). Reporting health authorities as most trusted sources of health information was associated with greater percentage of potential uptake of vaccine but not related to contact tracing app download and use. Individuals with lower concern of getting and spreading COVID-19 showed the least uptake of public health measures except for avoiding public places such as bars. Lower concern regarding COVID-19 was also associated with more negative responses to taking a potential COVID-19 vaccine. CONCLUSION: These results suggest informational frames and themes focusing on individual risks, highlighting concern for COVID-19 and targeting improving trust for health authorities may be most effective in increasing public health measures. With the ultimate goal of preventing spread of COVID-19, understanding persons' attitudes towards both public health measures and a COVID-19 vaccine remains critical to addressing barriers and implementing targeted interventions and messaging to improve uptake.

Key factors for national spread and scale-up of an eConsult innovation.

BACKGROUND: Expanding healthcare innovations from the local to national level is a complex pursuit requiring careful assessment of all relevant factors. In this study (a component of a larger eConsult programme of research), we aimed to identify the key factors involved in the spread and scale-up of a successful regional eConsult model across Canada. METHODS: We conducted a constant comparative thematic analysis of stakeholder discussions captured during a full-day National eConsult Forum meeting held in Ottawa, Canada, on 11 December 2017. Sixty-four participants attended, representing provincial and territorial governments, national organisations, healthcare providers, researchers and patients. Proceedings were recorded, transcribed and underwent qualitative analysis using the Framework for Applied Policy Research. RESULTS: This study identified four main themes that were critical to support the intentional efforts to spread and scale-up eConsult across Canada, namely (1) identifying population care needs and access problems, (2) engaging stakeholders who were willing to roll up their sleeves and take action, (3) building on current strategies and policies, and (4) measuring and communicating outcomes. CONCLUSIONS: Efforts to promote innovation in healthcare are more likely to succeed if they are based on an understanding of the forces that drive the spread and scale-up of innovation. Further research is needed to develop and strengthen the conceptual and applied foundations of the spread and scale-up of healthcare innovations, especially in the context of emergent learning health systems across Canada and beyond.

Top ten priorities for anesthesia and perioperative research: a report from the Canadian Anesthesia Research Priority Setting Partnership.

PURPOSE: The purpose of the Canadian Anesthesia Research Priority Setting Partnership (CAR PSP) was to identify a top ten list of shared priorities for research in anesthesia and perioperative care in Canada. METHODS: We used the methods of the James Lind Alliance to involve patients, caregivers, healthcare professionals, and researchers in determining the research priorities in Canada. In a first survey, participants submitted questions that they want research to answer about anesthesia and perioperative care. We summarized those responses into a longlist of questions. We reviewed the literature to see if any of those questions were already answered. In a second survey, participants chose up to ten questions from the longlist that they thought were most important to be answered with research. From that list, the highest ranking questions were discussed and assigned a final rank at an in-person workshop. RESULTS: A total of 254 participants submitted 574 research suggestions that were then summarized into 49 questions. Those questions were checked against the literature to be sure they were not already adequately addressed, and in a second survey of those 49 questions, participants chose up to 10 that they thought were most important. A total of 233 participants submitted their priorities, which were then used to choose 24 questions for discussion at the final workshop. At the final workshop, 22 participants agreed on a top ten list of priorities. CONCLUSION: The CAR PSP top ten priorities reflect a wide variety of priorities captured by a broad spectrum of Canadians who receive and provide anesthesia care. The priorities are a tool to initiate and guide patient-oriented research in anesthesia and perioperative care.

RéSUMé: OBJECTIF: L'objectif du Partenariat canadien pour l'établissement des priorités de la recherche en anesthésie (CAR-PSP) était d'établir une liste des dix principales priorités pour la recherche sur les soins anesthésiques et périopératoires au Canada. MéTHODES: Nous avons utilisé la méthodologie de la James Lind Alliance pour impliquer des patients, des aidants, des professionnels de la santé et des chercheurs afin de déterminer quelles étaient les priorités en matière de recherche au Canada. Dans une première enquête, les participants ont envoyé des questions sur les soins anesthésiques et périopératoires auxquelles ils voulaient que la recherche réponde. Nous avons résumé ces envois par une liste exhaustive de questions. Nous avons passé en revue les publications pour voir s'il existait déjà des réponses à ces questions. Dans une deuxième étude, les participants ont choisi dans la liste jusqu'à dix questions qui leur semblaient les plus importantes et pour lesquelles la recherche devrait fournir des réponses. À partir de cette liste, les questions les mieux classées ont été discutées et un classement définitif leur a été attribué au cours d'un atelier où tous les participants étaient présents en personne. RéSULTATS: Au total, 254 participants ont envoyé 574 suggestions de recherche qui ont été résumées en 49 questions. La littérature a été examinée pour s'assurer que ces questions n'avaient pas déjà reçu des réponses adéquates, et dans une seconde étude, les participants ont choisi jusqu'à 10 questions qu'ils jugeaient les plus importantes parmi ces 49 questions. Au total, 233 participants ont communiqué leurs priorités qui ont alors servi à choisir 24 questions ouvertes pour la discussion dans un atelier final. Dans cet atelier, 22 participants se sont mis d'accord sur une liste des dix principales priorités. CONCLUSION: Les dix principales priorités du CAR-PSP sont le reflet d'un grand éventail de priorités venant de Canadiens de tous horizons qui reçoivent ou fournissent des soins d'anesthésie. Ces priorités sont un outil permettant d'entamer et de guider une recherche axée sur le patient dans le domaine des soins anesthésiques et périopératoires.

Patient Engagement in a Large-Scale Change Initiative: "As Safe as Possible, as Soon as Possible".

Patients for Patient Safety Canada (PFPSC) member engagement has evolved from individual stories to having 27 patients and family members actively participating in the National Patient Safety Consortium. PFPSC collaborated with 270 other stakeholders in governance, leadership and action teams to design, implement and evaluate the National Patient Safety Consortium and Integrated Patient Safety Action Plan. There were several key outputs, including a patient engagement guide. This article illustrates how patients were meaningfully engaged in a large-scale change initiative, highlighting the experiences of the patient partners and organizational partners in this transformational change.

Using an Integrated Knowledge Translation (IKT) Approach to Enable Policy Change for Electronic Consultations in Canada.

This paper explores our efforts to support the expansion of a regional electronic consultation (eConsult) service on a national level by addressing potential policy barriers. We used an integrated knowledge translation (IKT) strategy based on five key activities leading to a National eConsult Policy Think Tank meeting: (1) identifying potential policy enablers and barriers; (2) engaging national and provincial/territorial partners; (3) including patient voices; (4) undertaking co-design and planning; and (5) adopting a solution-based approach. We successfully leveraged a diverse set of stakeholders in strategic discussions, culminating in actionable suggestions for next steps, which will serve to inform a national implementation strategy.

Patient and family engagement in Alberta Health Services: Improving care delivery and research outcomes.

Engaging patients and families in research and the design of quality improvement is an essential component of Patient and Family Centred Care (PFCC). Alberta Health Services (AHS) has been engaging patients and families to promote a cultural shift towards PFCC. The AHS trains patient and family advisors to share their experiences and encourages staff to work with advisors to co-design improvements in care. This article briefly describes the role and growth of patient and family advisors, advisory groups, and the participation of advisors in research initiatives through AHS' Strategic Clinical NetworksTM. It also describes recent efforts to build AHS' patient and family engagement capacity by introducing standard patient engagement training, supporting the creation of the innovative Patient and Community Engagement Research internship program, and by developing tools to measure the impact of patient and advisors on AHS. And finally, this article provides key learnings for health leaders.

Confidentiality and treatment decisions of minor clients: a health professional's dilemma & policy makers challenge.

Issues relating to confidentiality and consent for physical and mental health treatment with minor clients can pose challenges health care providers. Decisions need to be made regarding these issues despite the absence of clear, direct, or comprehensive policies and legislation. In order to fully understand the scope of this topic, a systemic review of several pieces of legislation and guidelines related to this topic are examined. These include the: Canadian Human Rights Act, Children's Rights: International and National Laws and Practices, Health Information Act, Gillick Competence and Medical Emancipation, Freedom of Information and Protection of Privacy Act, Child, Youth and Family Enhancement Act, Common Law Mature Minor Doctrine, and Alberta Health Services Consent to Treatment/Practice(s) Minor/Mature Minor. In order to assist health professionals with decisions regarding confidentiality and treatment with minor clients a case study and guide for decision-making is also presented.

Diabetes Attitudes Wishes and Needs 2 (DAWN2): a multinational, multi-stakeholder study of psychosocial issues in diabetes and person-centred diabetes care.

AIMS: The Diabetes Attitudes Wishes and Needs 2 (DAWN2) study aims to provide a holistic assessment of diabetes care and management among people with diabetes (PWD), family members (FM), and healthcare professionals (HCPs) and explores potential drivers leading to active management. METHODS: DAWN2 survey over 16,000 individuals (∼9000 PWD, ∼2000 FM of PWD, and ∼5000 HCPs) in 17 countries across 4 continents. Respondents complete a group-specific questionnaire; items are designed to allow cross-group comparisons on common topics. The questionnaires comprise elements from the original DAWN study (2001), as well as psychometrically validated instruments and novel questions developed for this study to assess self-management, attitudes/beliefs, disease impact/burden, psychosocial distress, health-related quality of life, healthcare provision/receipt, social support and priorities for improvement in the future. The questionnaires are completed predominantly online or by telephone interview, supplemented by face-to-face interviews in countries with low internet access. In each country, recruitment ensures representation of the diabetes population in terms of geographical distribution, age, gender, education and disease status. DISCUSSION: DAWN2 aims to build on the original DAWN study to identify new avenues for improving diabetes care. This paper describes the study rationale, goals and methodology.