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Data on the social determinants of health could be used to improve care, support quality improvement initiatives, and track progress toward health equity. However, this data collection is not widespread. Artificial intelligence (AI), specifically natural language processing and machine learning, could be used to derive social determinants of health data from electronic medical records. This could reduce the time and resources required to obtain social determinants of health data. This study aimed to understand perspectives of a diverse sample of Canadians on the use of AI to derive social determinants of health information from electronic medical record data, including benefits and concerns. Using a qualitative description approach, in-depth interviews were conducted with 195 participants purposefully recruited from Ontario, Newfoundland and Labrador, Manitoba, and Saskatchewan. Transcripts were analyzed using an inductive and deductive content analysis. A total of 4 themes were identified. First, AI was described as the inevitable future, facilitating more efficient, accessible social determinants of health information and use in primary care. Second, participants expressed concerns about potential health care harms and a distrust in AI and public systems. Third, some participants indicated that AI could lead to a loss of the human touch in health care, emphasizing a preference for strong relationships with providers and individualized care. Fourth, participants described the critical importance of consent and the need for strong safeguards to protect patient data and trust. These findings provide important considerations for the use of AI in health care, and particularly when health care administrators and decision makers seek to derive social determinants of health data.

Background Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. Aim This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. Methods Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi‐structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. Results Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two‐way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. Conclusion Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. Patient or Public Contribution Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video.

Growing evidence supports patient engagement (PE) in health implementation research to improve the quality, relevance and uptake of research. However, more guidance is needed to plan and operationalize PE before and throughout the research process. The aim of the study was to develop a logic model illustrating the causal links between context, resources, activities, outcomes and impact of PE in an implementation research programme. The Patient Engagement in Health Implementation Research Logic Model (hereafter the Logic Model) was developed using a descriptive qualitative design with a participatory approach, in the context of the PriCARE programme. This programme aims to implement and evaluate case management for individuals who frequently use healthcare services in primary care clinics across five Canadian provinces. Participant observation of team meetings was performed by all team members involved in the programme and in-depth interviews were conducted by two external research assistants with team members (n = 22). A deductive thematic analysis using components of logic models as coding categories was conducted. Data were pooled in the first version of the Logic Model, which was refined in research team meetings with patient partners. The final version was validated by all team members. The Logic Model highlights the importance of integrating PE into the project before its commencement, with appropriate support in terms of funding and time allocation. The governance structure and leadership of both principal investigators and patient partners have significant effects on PE activities and outcomes. As an empirical and standardized illustration that facilitates a shared understanding, the Logic Model provides guidance for maximizing the impact of patient partnership in various contexts for research, patients, providers and health care. The Logic Model will help academic researchers, decision makers and patient partners plan, operationalize, and assess PE in implementation research for optimal outcomes. Patient partners from the PriCARE research programme contributed to developing the research objectives and designing, developing and validating data collection tools, producing data, developing and validating the Logic Model and reviewing the manuscript.

Background Case management is one of the most frequently performed interventions to mitigate the negative effects of high healthcare use on patients, primary care providers and the healthcare system. Reviews have addressed factors influencing case management interventions (CMI) implementation and reported common themes related to the case manager role and activities, collaboration with other primary care providers, CMI training and relationships with the patients. However, the heterogeneity of the settings in which CMI have been implemented may impair the transferability of the findings. Moreover, the underlying factors influencing the first steps of CMI implementation need to be further assessed. This study aimed to evaluate facilitators and barriers of the first implementation steps of a CMI by primary care nurses for people with complex care needs who frequently use healthcare services. Methods A qualitative multiple case study was conducted including six primary care clinics across four provinces in Canada. In-depth interviews and focus groups with nurse case managers, health services managers, and other primary care providers were conducted. Field notes also formed part of the data. A mixed thematic analysis, deductive and inductive, was carried out. Results Leadership of the primary care providers and managers facilitated the first steps of the of CMI implementation, as did the experience and skills of the nurse case managers and capacity development within the teams. The time required to establish CMI was a barrier at the beginning of the CMI implementation. Most nurse case managers expressed apprehension about developing an “individualized services plan” with multiple health professionals and the patient. Clinic team meetings and a nurse case managers community of practice created opportunities to address primary care providers’ concerns. Participants generally perceived the CMI as a comprehensive, adaptable, and organized approach to care, providing more resources and support for patients and better coordination in primary care. Conclusion Results of this study will be useful for decision makers, care providers, patients and researchers who are considering the implementation of CMI in primary care. Providing knowledge about first steps of CMI implementation will also help inform policies and best practices.

ObjectiveWith the onset of the COVID-19 pandemic, telehealth case management (TCM) was introduced in primary care for patients requiring care by distance. While not all healthcare needs can be addressed via telehealth, the use of information and communication technology to support healthcare delivery has the potential to contribute to the management of patients with chronic conditions and associated complex care needs. However, few qualitative studies have documented stakeholders’ perceptions of TCM. This study aimed to describe patients’, primary care providers’ and clinic managers’ perceptions of the use of a nurse-led TCM intervention for primary care patients with complex care needs.DesignQualitative descriptive study.SettingThree primary care clinics in three Canadian provinces.ParticipantsPatients with complex care needs (n=30), primary care providers (n=11) and clinic managers (n=2) participated in qualitative individual interviews and focus groups.InterventionTCM intervention was delivered by nurse case managers over a 6-month period.ResultsParticipants’ perceptions of the TCM intervention were summarised in three themes: (1) improved patient access, comfort and sense of reassurance; (2) trusting relationships and skilled nurse case managers; (3) activities more suitable for TCM. TCM was a generally accepted mode of primary care delivery, had many benefits for patients and providers and worked well for most activities that do not require physical assessment or treatment. Participants found TCM to be useful and a viable alternative to in-person care.ConclusionsTCM improves access to care and is successful when a relationship of trust between the nurse case manager and patient can develop over time. Healthcare policymakers and primary care providers should consider the benefits of TCM and promote this mode of delivery as a complement to in-person care for patients with complex care needs.

ObjectiveThis study validates the previously tested Screening for Poverty And Related social determinants to improve Knowledge of and access to resources (‘SPARK Tool’) against comparison questions from well-established national surveys (Post Survey Questionnaire (PSQ)) to inform the development of a standardised tool to collect patients’ demographic and social needs data in healthcare.DesignCross-sectional study.SettingPan-Canadian study of participants from four Canadian provinces (SK, MB, ON and NL).Participants192 participants were interviewed concurrently, completing both the SPARK tool and PSQ survey.Main outcomesSurvey topics included demographics: language, immigration, race, disability, sex, gender identity, sexual orientation; and social needs: education, income, medication access, transportation, housing, social support and employment status. Concurrent validity was performed to assess agreement and correlation between SPARK and comparison questions at an individual level as well as within domain clusters. We report on Cohen’s kappa measure of inter-rater reliability, Pearson correlation coefficient and Cramer’s V to assess overall capture of needs in the SPARK and PSQ as well as within each domain. Agreement between the surveys was described using correct (true positive and true negative) and incorrect (false positive and false negative) classification.ResultsThere was a moderate correlation between SPARK and PSQ (0.44, p<0.0001). SPARK correctly classified 71.4% of participants with or without a social need. There was strong agreement with most demographic questions. SPARK correctly classified 74.3% of participants as having financial insecurity. Clustering financial security questions had fewer false negatives (6.4%, n=11/171 vs 9.9%, n=17/171) and more false positives (19.3%, n=33/171 vs 11.1%, n=19/171) when compared with the question ‘difficulty making ends meet’. When looking specifically at participants with high UCLA loneliness scores (>60), SPARK correctly classified 90.5% (n=176/191).ConclusionsSPARK provides a brief 15 min screening tool for primary care clinics to capture social and access needs. SPARK was able to correctly classify most participants within each domain. Related ongoing research is needed to further validate SPARK in a large representative sample and explore primary care implementation strategies to support integration.

Background Patient‐reported outcome measures (PROMs) are widely recognized as important tools for achieving a patient‐centred approach in health research. While PROMs are subject to several stages of validation during development, even questionnaires with robust psychometric properties may challenge patient comfort and understanding. Aim Building on the experience of patient engagement in the PriCARE research programme, this paper outlines the team's response to concerns raised by patient partners regarding the administration of the questionnaire. Methods Based on a participatory action research design and the patient engagement framework in the Strategy for Patient‐Oriented Research of the Canadian Institutes of Health Research, PriCARE team members worked together to discuss concerns, review the questionnaires and come up with solutions. Data were collected through participant observation of team meetings. Results This paper demonstrates how patient partners were engaged in PriCARE and integrated into the programme's governance structure, focusing on the challenges that they raised regarding the questionnaires and how these were addressed by PriCARE team members in a six‐step approach: (1) Recognizing patient partner concerns, discussing concerns and reframing the challenges; (2) Detailing and sharing evidence of the validity of the questionnaires; (3) Evaluating potential solutions; (4) Searching the literature for guidelines; (5) Creating guidelines; and (6) Sharing and refining guidelines. Conclusion This six‐step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise and ensure that the patient perspective is taken into consideration in research and healthcare innovation. Patient or Public Contribution All patient partners from the PriCARE programme were actively involved in the six‐step approach. They were also involved in the preparation of the manuscript.

Background Adults with chronic conditions who also suffer from mental health comorbidities and/or social vulnerability require services from many providers across different sectors. They may have complex health and social care needs and experience poorer health indicators and high mortality rates while generating considerable costs to the health and social services system. In response, the literature has stressed the need for a collaborative approach amongst providers to facilitate the care transition process. A better understanding of care transitions is the next step towards the improvement of integrated care models. The aim of the study is to better understand care transitions of adults with complex health and social care needs across community, primary care, and hospital settings, combining the experiences of patients and their families, providers, and health managers. Methods/design We will conduct a two-phase mixed methods multiple case study (quantitative and qualitative). We will work with six cases in three Canadian provinces, each case being the actual care transitions across community, primary care, and hospital settings. Adult patients with complex needs will be identified by having visited the emergency department at least three times over the previous 12 months. To ensure they have complex needs, they will be invited to complete INTERMED Self-Assessment and invited to enroll if positive. For the quantitative phase, data will be obtained through questionnaires and multi-level regression analyses will be conducted. For the qualitative phase, semi-structured interviews and focus groups will be conducted with patients, family members, care providers, and managers, and thematic analysis will be performed. Quantitative and qualitative results will be compared and then merged. Discussion This study is one of the first to examine care transitions of adults with complex needs by adopting a comprehensive vision of care transitions and bringing together the experiences of patients and family members, providers, and health managers. By using an integrated knowledge translation approach with key knowledge users, the study’s findings have the potential to inform the optimization of integrated care, to positively impact the health of adults with complex needs, and reduce the economic burden to the health and social care systems.

Case management (CM) is an intervention for improving integrated care for patients with complex care needs. The implementation of this complex intervention often raises opportunities for change and collective leadership has the potential to optimize the implementation. However, the application of collective leadership in real-world is not often described in the literature. This commentary highlights challenges faced during the implantation of a CM intervention in primary care for people with complex care needs, including stakeholders’ buy-in and providers’ willingness to change their practice, selection of the best person for the case manager position and staff turnover. Based on lessons learned from PriCARE research program, this paper encourages researchers to adopt collective leadership strategies for the implementation of complex interventions, including promoting a collaborative approach, fostering stakeholders’ engagement in a trusting and fair environment, providing a high level of communication, and enhancing collective leadership attitudes and skills. The learnings from the PriCARE program may help guide researchers for implementing complex healthcare interventions.

Background Healthcare organizations are increasingly exploring ways to address the social determinants of health. Accurate data on social determinants is essential to identify opportunities for action to improve health outcomes, to identify patterns of inequity, and to help evaluate the impact of interventions. The objective of this study was to refine a standardized tool for the collection of social determinants data through cognitive testing. Methods An initial set of questions on social determinants for use in healthcare settings was developed by a collaboration of hospitals and a local public health organization in Toronto, Canada during 2011–2012. Subsequent research on how patients interpreted the questions, and how they performed in primary care and other settings led to revisions. We administered these questions and conducted in-depth cognitive interviews with all the participants, who were from Saskatchewan, Manitoba, Ontario, and Newfoundland and Labrador. Cognitive interviewing was used, with participants invited to verbalize thoughts and feelings as they read the questions. Interview notes were grouped thematically, and high frequency themes were addressed. Results Three hundred and seventy-five individuals responded to the study advertisements and 195 ultimately participated in the study. Although all interviews were conducted in English, participants were diverse. For many, the value of this information being collected in typical healthcare settings was unclear, and hence, we included descriptors for each question. In general, the questions were understood, but participants highlighted a number of ways the questions could be changed to be even clearer and more inclusive. For example, more response options were added to the question of sexual orientation and the “making ends meet” question was completely reworded in light of challenges to understand the informal phrasing cited by English as a Second Language (ESL) users of the tool. Conclusion In this work we have refined an initial set of 16 sociodemographic and social needs questions into a simple yet comprehensive 18-question tool. The changes were largely related to wording, rather than content. These questions require validation against accepted, standardized tools. Further work is required to enable community data governance, and to ensure implementation of the tool as well as the use of its data is successful in a range of organizations.