Governance Challenges to Promoting Data Readiness and Data Linkage for Not-for-Profit Organizational Service Data

Introduction Data collected by myriad not-for-profit (NFPs) agencies while providing social services represent a significant untapped source of intelligence. While much research has been conducted on the governance and capacity to share administrative and research data, little work has been done in the area of NFP data sources. Objectives and Approach Six NFP agencies in Calgary participated in a data sharing project to measure various aspects of poverty. This collaboration required understanding the legal, ethical, policy and data challenges to working with data collected in the NFP sector. This case study will expose (a) the legal analysis on legal and governance issues for, and obligations of, NFPs when aiming to share and re-use information beyond service delivery in Alberta, Canada; and (b) the practical and policy challenges faced by the NFPs and repository. The legal analysis involved a systematic search of academic and grey literature; relevant legislation and case-law (especially privacy law). Results The legal analysis demonstrated three key things. First, in many circumstances an NFP is not held to any information-handling legal obligations. This does not absolve NFPs from social privacy expectations, especially involving vulnerable populations. Second, privacy best practices are available to NFPs from other more-regulated sectors and from NFP sector standards. The trifecta of purpose, reasonableness and minimal extent are critical. Third, adhering to privacy best practices would not be overly costly, more efficient, and less risky of negative publicity and lost public trust from privacy complaints. These findings informed the NFP data sharing project. The six participant NFPs varied greatly in their approach to consent, governance and information-handling, which affected their data-readiness for cross-organizational data linkage and analysis. Conclusion/Implications Unlike government, most NFPs have limited experience with data linkage. This paper informs ethical approaches to include NFP data in broad cross-sector data linkage. Appropriate data governance is imperative for data sharing amongst NFPs, researchers and public organizations, which promotes community service delivery, evaluation and improvements to benefit vulnerable families

The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data

Introduction Innovative data platforms (e.g. biobanks, repositories) continually emerge to facilitate data sharing. Extant and emerging data platforms must navigate myriad tensions for successful data sharing and re-use. Two Alberta data platforms navigated such processes and factors regarding administrative, research and nonprofit data: the Child & Youth Data Laboratory (CYDL) and Secondary Analysis to Generate Evidence (SAGE). Objectives To clarify the social and policy factors that influenced CYDL and SAGE establishment and implementation, and the relationships, if any, between these factors and data type. Methods This paper involves a qualitative secondary analysis of two developmental evaluations on CYDL and SAGE establishment. Six-years post-implementation, the CYDL evaluation entailed document review; website user analysis; informant interviews (n=30); online stakeholder survey (n=260); and an environmental scan. One-year post implementation, the SAGE evaluation included 15 interviews and document review. We used thematic analysis and comparisons with the literature to identify key factors. Results Three (not mutually exclusive) categories of social and policy factors influenced the navigation towards CYDL and SAGE realization: trusting relationships; sustainability amidst readiness; and privacy within social context. For these platforms to be able to manage, link or share data, trust had to be fostered and maintained across multiple, dynamic and intersecting relationships between primary data producers, data subjects, secondary users and institutions. Platform sustainability and readiness required capacity building and innovation. Privacy and information sharing evolved culturally and correspondingly for these data platforms, which required constant flexibility and awareness. Conclusions This commentary calls for more empirical research on the value of data re-use or the detriment in not re-using data. While the culture of information sharing is progressing towards greater openness and capacity for data sharing and re-use, successful data platforms must advocate, facilitate and mobilize analysis and innovation using data re-use while being cognizant of social and policy influences

Empowerment, Communication, and Navigating Care: The Experience of Persons With Spinal Cord Injury From Acute Hospitalization to Inpatient Rehabilitation

BackgroundSpinal cord injury (SCI) results in long-term functional impairments that significantly impact participation and role in the community. Newly injured persons are often reintroduced to the community with significant deficits in knowledge, including how to access and navigate community resources and supports. This warrants a better understanding of the patient experience of in-hospital care and discharge planning to ensure individuals with SCI are best supported during transitions in care and while living in the community.ObjectiveTo explore the lived experience of persons with acute SCI and their perceptions of care, focusing on the initial hospital experiences to inpatient rehabilitation.MethodsA phenomenological research study was conducted using semi-structured interviews. Eligible participants had differing etiologies of SCI (including non-traumatic and traumatic SCI), were over the age of 18 at the time of initial care, and experienced acute hospital and inpatient rehabilitation at an Alberta-based institution within the last 10 years. One-on-one interviews took place between March and June 2021 over telephone or virtual platforms (Zoom). Interview transcripts, and field notes developed the text, which underwent hermeneutic analysis to develop central themes.ResultsThe present study included 10 participants living with an SCI in Alberta, Canada. Most participants (80%) were male. Participants' age ranged from 24 to 69 years. The median years since initial SCI was 3 years. Interviews lasted 45–75 min. Seven participants identified as having a traumatic SCI injury and three identified as having a non-traumatic SCI. The interplay between empowerment and disempowerment emerged as the core theme, permeating participants' meanings and perceptions. Three main themes emerged from the interviews regarding the perceptions of the SCI patient experience. Each theme represents a perception central to their inpatient experience: desire to enhance functional independence to empower confidence and self-management; need for effective communication with healthcare providers to support recovery; and navigating appropriate care supports to enhance preparedness for discharge and returning home.ConclusionThis study demonstrates the significant need to enhance education of person/family-centered SCI care, foster positive communication between care recipients and care providers, and facilitate better in-hospital access to appropriate navigation and wayfinding supports

A qualitative description of barriers to visual rehabilitation experienced by stroke survivors with visual impairment in Alberta, Canada

Abstract Background Post-stroke visual impairment (VI) is a common but under-recognized care challenge. Common manifestations of post-stroke VI include: diplopia, homonymous hemianopia, oscillopsia secondary to nystagmus, and visual inattention or neglect. In acute care settings, post-stroke VI recognition and treatment are often sub-optimal as emphasis is placed on survival. Stroke survivors with VI often face inconsistencies when accessing care out of hospital because variable availability and subsidization of visual rehabilitation. We sought to identify gaps in care experienced by stroke survivors with VI from stroke survivors’ and care providers’ perspectives. Methods We conducted a qualitative description study across 12 care sites in Alberta, Canada, using semi-structured interviews. Survivor interviews focused on the health system experience. Provider interviews discussed approaches to care, perceived gaps, and current resources. Interviews were audio-recorded and transcribed. Iterative content analysis was completed using NVivo 12. We promoted rigour through an audit trail, open-ended questions, thick description, and collaborative coding. Results We completed 50 interviews: 19 survivor interviews and 31 provider interviews. The majority of survivors were male (n = 14) and recruited from community settings (n = 16). Providers varied in profession and location within the care continuum. Two key themes emerged from the provider and survivor interviews pertaining to (a) facets of visual rehabilitation (sub-themes: access, resources, and multidisciplinary professional interaction); and (b) functioning with post-stroke VI (sub-themes: early experiences post-stroke and living with VI in the real world). Conclusions The visual rehabilitation model needs to be optimized to ensure transparent inter-disciplinary communication and efficient referral pathways. Future research will focus on evaluating the effectiveness of post-stroke care from multiple perspectives in Alberta

Barriers to care for poststroke visual deficits in Alberta, Canada

Poststroke visual impairment (VI) negatively affects rehabilitation potential and quality of life for stroke survivors. In this cross-sectional observational study, stroke survivors and providers were surveyed to quantify perspectives regarding care for poststroke VI in Alberta, Canada (n = 46 survivors; n = 87 providers). Few patients (35%) felt prepared to cope with VI at the time of discharge from acute stroke and inpatient rehabilitation settings. Less than 25% of stroke survivors, and \u3c16% of providers, felt referral processes were adequate. 95.2% of providers and 82% of stroke survivors advocated for a provincial clinical pathway to improve care quality for poststroke VI

Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences

Abstract Background Mandates abound to share publicly-funded research data for reuse, while data platforms continue to emerge to facilitate such reuse. Birth cohorts (BC) involve longitudinal designs, significant sample sizes and rich and deep datasets. Data sharing benefits include more analyses, greater research complexity, increased opportunities for collaboration, amplification of public contributions, and reduced respondent burdens. Sharing BC data involves significant challenges including consent, privacy, access policies, communication, and vulnerability of the child. Research on these issues is available for biological data, but these findings may not extend to BC data. We lack consensus on how best to approach these challenges in consent, privacy, communication and autonomy when sharing BC data. We require more stakeholder engagement to understand perspectives and generate consensus. Methods Parents participating in longitudinal birth cohorts completed a web-based survey investigating consent preferences for sharing their, and their child’s, non-biological research data. Results from a previous qualitative inquiry informed survey development, and cognitive interviewing methods (n = 9) were used to improve the question quality and comprehension. Recruitment was via personalized email, with email and phone reminders during the 14-day window for survey completion. Results Three hundred and forty-six of 569 parents completed the survey in September 2014 (60.8%). Participants preferred consent processes for data sharing in future independent research that were less-active (i.e. no consent or opt-out). Parents’ consent preferences are associated with their communication preferences. Twenty percent (20.2%) of parents generally agreed that their child should provide consent to continue participating in research at age 12, while 25.6% felt decision-making on sharing non-biological research data should begin at age 18. Conclusions These finding reflect the parenting population’s preference for less project-specific permission when research data is non-biological and de-identified and when governance practices are highly detailed and rigourous. Parents recognize that children should become involved in consent for secondary data use, but there is variability regarding when and how involvement occurs. These findings emphasize governance processes and participant notification rather than project-specific consent for secondary use of de-identified, non-biological data. Ultimately, parents prefer general consent processes for sharing de-identified, non-biological research data with ultimate involvement of the child

Evaluating Efficiency of a Provincial Telerehabilitation Service in Improving Access to Care During the COVID-19 Pandemic

Scope: Early in the COVID-19 pandemic, community rehabilitation stakeholders from a provincial health system designed a novel telerehabilitation service. The service provided wayfinding and self-management advice to individuals with musculoskeletal concerns, neurological conditions, or post-COVID-19 recovery needs. This study evaluated the efficiency of the service in improving access to care. Methodology: We used multiple methods including secondary data analyses of call metrics, narrative analyses of clinical notes using artificial intelligence (AI) and machine learning (ML), and qualitative interviews.                                                                        Conclusions: Interviews revealed that the telerehabilitation service had the potential to positively impact access to rehabilitation during the COVID-19 pandemic, for individuals living rurally, and for individuals on wait lists. Call metric analyses revealed that efficiency may be enhanced if call handling time was reduced. AI/ML analyses found that pain was the most frequently-mentioned keyword in clinical notes, suggesting an area for additional telerehabilitation resources to ensure efficiency