Personal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research. A 45-item survey was distributed to a convenience sample of patients at an outpatient clinic in a large urban centre. The survey briefly addressed sociodemographic and illness characteristics. Opinions were sought on the research use of health information and biospecimens including consent preferences. Two hundred eleven of 400 distributed surveys were completed (response rate 52.8 %). Respondents were generally supportive of medical research and trusting of researchers. Many respondents supported the use of their information and biospecimens for health research and also preferred consent be sought for use of health information and biospecimens. Some supported the use of their information and biospecimens for research without consent. There were significant differences in the opinions people offered regarding the research use of biospecimens compared to health information. Some respondent perspectives about consent were at odds with current regulatory and legal standards. Clinical health data and biospecimens are valuable research resources, critical to the advancement of medicine. Use of these data for research requires balancing respect for individual autonomy, privacy and the societal interest in the greater good. Incongruence between some respondent perspectives and the regulatory standards suggest both a need for public education and review of legislation to increase understanding and ensure the public’s trust is maintained.

The availability of complex, pediatric home care (CPHC) allows ventilator-dependent children to live at home not hospital. The process of transition from hospital to home encompasses the morphing of responsibilities from uniquely hospital based to CPHC based. This study promoted contextualized understanding of transition using in-depth case-study methodology. A total of 26 adults were interviewed for their roles and responsibilities in transition; they represented members of the family, hospital team, home team, and government programs. Interview analyses revealed four major facets of transition, each accompanied by a significant challenge. Transition (a) was a continuous shift in responsibility challenged by precarious human resources, (b) was peppered with losses producing uncertainty and grief, (c) was focused on crossing jurisdictions in the face of polarization around knowledge, and (d) was heavily reliant on mothers leading to expectations of maternal extraordinariness. The overarching conceptualization emerged that transition entailed extremes and uncertainty in the bridging of boundaries.

Objective To describe and measure the shared decision-making (SDM) experience, including goal-setting experiences, from the perspective of patients and providers in diverse community-rehabilitation settings. Design Prospective, longitudinal surveys. Setting 13 primary level-of-care community-rehabilitation sites in diverse areas varying in geography, patient population and provider discipline 341 adult, English-speaking patient-participants, and 66 provider-participants. Measures Alberta Shared decision-maKing Measurement Instrument (dyadic tool measuring SDM), WatLX (outpatient rehabilitation experience) and demographic questionnaire. Survey packages distributed at two timepoints (T0=recruitment; T1=3 months later). Results We found that among 341 patient–provider dyads, 26.4% agreed that the appointment at recruitment involved high-quality SDM. Patient perceptions of goal-setting suggested that 19.6% of patients did not set a goal for their care, and only 11.4% set goals in functional language that tied directly to an activity/role/responsibility that was meaningful to their life. Better SDM was clinically associated with higher total family income (p=0.045). Conclusions These findings provide evidence for the importance of SDM and goal setting in community rehabilitation. Among patients, lower ratings of SDM corresponded with less recognition of their preferences. Actionable strategies include supporting financially vulnerable patients in realising SDM through training of providers to make extra space for such patients to share their preferences and better preparing patients to articulate their preferences. We recommend more research into strategies that advance highly functional goal setting with patients, and that lessen survey ceiling effects.

Objective: The purpose of this study was to describe the development and composition of a codesigned, multidisciplinary, integrated, systematic rehabilitation framework for post-COVID conditions (PCC) that spans the care continuum to streamline and standardize rehabilitation services to support persons with PCC in Alberta, Canada. Methods: A collaborative, consensus-based approach was used involving 2 iterative provincial taskforces in a Canadian provincial health system. The first taskforce (59 multidisciplinary stakeholders) sought to clarify the requisite facets of a sustainable, provincially coordinated rehabilitation approach for post-COVID rehabilitation needs based on available research evidence. The second taskforce (129 multidisciplinary stakeholders) translated that strategy and criteria into an operational framework for provincial implementation. Both taskforces sought to align with operational realities of the provincial health system. Results: The summation of this collaborative consensus approach resulted in the Provincial Post COVID-19 Rehabilitation Response Framework (PCRF). The PCRF includes 3 care pathways across the care continuum specifically targeting in-hospital care, continuing care, and community-based care with 3 key elements: (1) the use of specific symptom screening and assessment tools to systematically identify PCC symptoms and functional impairments, (2) pathways to determine patients’ rehabilitation trajectory and guide their transition between care settings, and (3) self-management and education resources for patients and providers. Conclusion: The PCRF aligns with international mandates for novel, codesigned, multidisciplinary approaches to systematically address PCC and its myriad manifestations across the care continuum. The PCRF allows for local adaptation and highlights equity considerations, allowing for further spread and scale provincially, nationally, and internationally. Impact: The PCRF is a framework for health systems to ensure consistent identification, assessment, and management of the rehabilitation needs of postacute and chronic PCC. Rehabilitation providers and health systems can build from the PCRF for their local communities to reduce unmet needs and advance the standardization of access to rehabilitation services for persons with PCC.

Background: Shared decision-making (SDM) can advance patient satisfaction, understanding, goal fulfilment, and patient-reported outcomes. We lack clarity on whether this physician-focused literature applies to community rehabilitation, and on the integration of SDM policies in healthcare settings. We aimed to understand patient and provider perceptions of shared decision-making (SDM) in community rehabilitation, particularly the barriers and facilitators to SDM. Methods: We used a focused ethnography involving 14 community rehabilitation sites across Alberta, including rural, regional-urban and metropolitan-urban sites. We conducted semi-structured interviews that asked participants about their positive and negative communication experiences (n = 23 patients; n = 26 providers). Results: We found SDM experiences fluctuated between extremes: Getting Patient Buy-In and Aligning Expectations. The former is provider-driven, prescriptive and less flexible; the latter is collaborative, inquisitive and empowering. In Aligning Expectations, patients and providers express humility and openness, communicate in the language of ask and listen, and view education as empowering. Patients and providers described barriers and facilitators to SDM in community rehabilitation. Facilitators included geography influencing context and connections; consistent, patient-specific messaging; patient lifestyle, capacity and perceived outlook; provider confidence, experience and perceived independence; provider training; and perceptions of more time (and control over time) for appointments. SDM barriers included lack of privacy; waitlists and financial barriers to access; provider approach; how choices are framed; and, patient’s perceived assertiveness, lack of capacity, and level of deference. Conclusions: We have found both excellent experiences and areas for improvement for applying SDM in community rehabilitation. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers. This research will support the spread, scale and evaluation of a new Model of Care in rehabilitation by the provincial health system, which aimed to promote patient-centred care.