Background The expectation to include patients as partners in research has steadily gained momentum. The vulnerability of frail and/or seriously ill patients provides additional complexity and may deter researchers from welcoming individuals from this patient population onto their teams. The aim was to synthesize the evidence on the engagement of frail and/or seriously ill patients as research partners across the research cycle. Methods A systematic review was conducted using PRISMA guidelines. A search strategy included MEDLINE®, EMBASE®, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO from database inception to April, 2019. Eligible studies were peer-reviewed qualitative, quantitative, and mixed methods research reporting on the engagement of frail and/or seriously ill patients as partners on research teams. The Mixed Methods Appraisal Tool was used to appraise study quality. Narrative analysis was conducted. Results Of 8763 citations, 30 were included. Most studies included individuals with cancer on the research team (60%). Barriers included: lack of time and resources (50%), discontinuity in contribution (37%), and concerns for well-being (33%). Facilitators included: trust and mutual respect (60%), structural accessibility (57%), flexibility in timing and methods of engagement (43%), and attention to care and comfort, (33%). Perceived impacts for patients included: renewed personal sense of agency (37%) and emotional/peer support (37%). Impacts for researchers included sensitization to the lived experience of disease (57%) and an increased appreciation of the benefits of patient engagement (23%). Research design, execution, and outcomes, developed with patients, were deemed more suitable, relevant and reflective of patients’ priorities. Conclusions There is emerging evidence to suggest that research partnerships with frail and/or seriously ill patients can be achieved successfully. Patients mostly report benefit from partnering with research teams. Frailty and/or serious illness do present legitimate concerns for their well-being but appear to be successfully mitigated when researchers ensure that the purpose of engagement is well-defined, the timing and methods of engagement are flexible, and the practical and emotional needs of patient partners are addressed throughout the process. Systematic review registration The systematic review protocol was registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).

To meet urgent decisional needs of retirement/nursing home residents and their families, our interdisciplinary stakeholder team rapidly developed and disseminated patient decision aids (PtDAs) regarding leaving one’s residence during the COVID-19 pandemic. The development steps were as follows: identify urgent decisional needs, develop PtDAs using the Ottawa Decision Support Framework template and minimal International PtDA Standards, obtain stakeholder feedback, broadly disseminate, and incorporate user feedback. Within 2 wk, we developed 2 PtDAs for retirement and nursing home living environments that were informed by decisional needs (identified from public responses to related media reports), current pandemic regulations/guidance, and recent systematic reviews. Within 3 wk of their dissemination (websites, international PtDA inventory, Twitter, Facebook, media interviews), the PtDAs were downloaded 10,000 times, and user feedback was positive. Our expert team showed feasible rapid development and wide dissemination of PtDAs to respond to urgent decisional needs. Development efficiencies included access to a well-tested theory-based PtDA template, recent evidence syntheses, and values-based public responses to media reports. Future research includes methods for rapidly collecting user feedback, facilitating implementation, and measuring use and outcomes.

Most cancer treatments are delivered in ambulatory centers with symptoms managed by clients at home. 1-3 Support from home care nurses guides clients to safely manage symptoms at home and triages potentially life-threatening symptoms. 2,4 Home care in Canada is the fastest growing segment of the health care system 5 ; yet, symptom management in home care has focused on palliative care, 6,7 telephone support, 8-12 or web-based interventions. 13,14 Previous home care nursing studies emphasize the need for improved symptom management to promote independence, maintain quality of life, and decrease use of health care services. 15,16 Although home care nurses have the opportunity to improve the cancer experience, the isolated nature of care

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Background The commitment to engage patients as partners in research has been described as a political, moral and ethical imperative. Researchers feel ill-equipped to deal with potential ethical implications of engaging patients as partners. The aim of this study is to identify the ethical considerations related to engaging frail and seriously ill (FSI) patients as partners in research. Methods We conducted a sub-analysis of a prior systematic review of 30 studies that engaged FSI patients as partners in research. Studies were included if they reported ethical considerations associated with partnering. We performed deductive content analysis, data were categorized according to Beauchamp and Childress’ Principles of Biomedical Ethics (2019): autonomy, non-maleficence, beneficence, and justice. Results Twenty-five studies were included. Common ethical considerations reported in relation to the principles were: autonomy – promoting desired level of involvement, addressing relational and intellectual power, facilitating knowledge and understanding of research; non-maleficence – protection from financial burden, physical and emotional suffering; beneficence – putting things right for others, showing value-added, and supporting patient-partners; and, justice – achieving appropriate representation, mutual respect for contributions, and distributing risks and benefits. Conclusions When partnering with FSI patients, research teams need to establish shared values and ensure processes are in place to identify and address ethical issues. Researchers and patients should work together to clarify the intent and outcomes of the partnership, actively address power differentials, recognize and minimize the potential for unintended harm, and strive to maximize the benefits of partnership. Systematic review registration The protocol for the original systematic review has been registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).

Introduction The pan-Canadian Oncology Symptom Triage and Remote Support (costars) team is studying how to improve the quality and consistency of cancer symptom management.Methods A 1-day invitational meeting was held 24 October 2017 in Ottawa, Ontario, to review the current evidence from costars projects and to establish research priorities for a future largescale implementation study. The meeting included 36 participants who were clinicians from adult oncology, pediatric oncology, and homecare; policymakers from national, provincial, and regional organizations; researchers; and a patient. Half the day involved summarizing evidence from four costars studies and experiences with implementing the costars symptom practice guides. The second half of the day used a modified nominal group technique to generate research questions within small groups, presentation of research questions to all participants, and two rounds of voting to reach consensus on research priorities.Results Participants proposed 4 research categories:■ User-centred augmentation to enhance usability (for example, designing a mobile costars solution)■ Outcome measurement (for example, determining key competencies for clinicians)■ Regular renewal of costars to keep pace with evolving evidence (for example, updates for novel therapies)■ Integration into clinical practice (for example, meaningful engagement of patients and caregivers in study design)Conclusions Across categories, the top 3 priorities were effect on health services use, competency development, and a mobile costars solution. Future research will address identified priorities, reflecting the needs and perspectives of diverse stakeholders. Stakeholder collaboration will continue to guide our approach to operationalizing this priority research agenda.

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Symptoms experienced by clients with cancer often occur at home and can become life-threatening, posing serious safety concerns. This study evaluated implementation of evidence-informed symptom practice guides to enhance quality of cancer symptom support by homecare nurses. A comparative case study was conducted using the Knowledge to Action Framework. Case were created for each of six agencies providing nursing care within a regional homecare authority. A team of researchers and knowledge users (e.g., managers, educators, family member): (1) assessed factors influencing practice guide use (survey, interviews) at six agencies, (2) adapted 15 practice guides for local use, (3) implemented with interventions to address barriers, and (4) monitored use. Analysis was within and across cases. Of six nursing agencies, one withdrew and five participated. In the baseline survey, 51% of nurses reported using guidelines but nurses did not describe using them in their current practice during the interviews. To overcome barriers, 489 nurses in five agencies were trained in how to use the practice guides, principles were established for documenting cancer symptom management, and practice guides were made available in various formats. Success with implementation varied across the participating cases. Chart audits conducted in three agencies revealed evidence of practice guide use for 16%, 22%, and 70% client visits, respectively. Implementation of evidence-informed practice guides in nursing required an approach tailored for each agency. Training, integration in documentation, and easy access to practice guides increased use for some nurses but ongoing support and reinforcement from nurse leaders is required.