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Sandra L Carroll,1–3 Gayathri Embuldeniya,3 Jasprit Pannag,1 Krystina B Lewis,4 Jeff S Healey,2,3,5 Michael McGillion,1,2 Lehana Thabane,2,6,7 Dawn Stacey4,8 1School of Nursing, McMaster University, Hamilton, ON, Canada; 2Population Health Research Institute, Hamilton Health Sciences, Hamilton, ON, Canada; 3Hamilton Health Sciences, Hamilton, ON, Canada; 4School of Nursing, University of Ottawa, Ottawa, ON, Canada; 5Department of Medicine, McMaster University, Hamilton, ON, Canada; 6Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, Canada; 7Biostatistics Unit, St. Joseph’s Healthcare, Hamilton, ON, Canada; 8Ottawa Hospital Research Institute, Ottawa, ON, Canada Purpose: Patients’ values are a key component of patient-centered care and shared decision making in health care organizations. There is limited understanding on how patients’ values guide their health related decision making or how patients understand the concept of values during these processes. This study investigated patients’ understanding of their values in the context of considering the risks/benefits of receiving an implantable cardioverter-defibrillator (ICD). Patients and methods: A qualitative substudy was conducted within a feasibility trial with first-time ICD candidates randomized to receive a patient decision aid or usual care prior to specialist consultation. Semi-structured interviews were conducted with participants post-implantation or post-specialist consultation. Results: Sixteen patients (ten male) aged 47–87 years participated. Of these, ten (62.5%) received the patient decision aid prior to specialist consultation. Findings revealed patients were confused by the word “values” and had difficulty expressing values related to risks/benefits during ICD decision making. When probed, values were conceptualized broadly capturing other factors such as desire to live, good quality of life, family’s views, ICD information, control over decision, and medical authority. Conclusion: This study revealed the difficulty patients considering an ICD had with articulating their values in the context of an ICD health decision and highlighted the challenge to effectively elicit patients’ values within health decisions overall. It is suggested that there should be a shift away from the use of the word “values” when speaking directly to patients toward language such as “what matters to you the most” or “what is most important to you”. Keywords: values, patient preferences, patient engagement, qualitative, health decision

Sandra L Carroll,1 Gayathri Embuldeniya,1 Julia Abelson,2 Michael McGillion,1 Alexandre Berkesse,3 Jeff S Healey4 1Faculty of Health Sciences, School of Nursing, McMaster University, Hamilton, ON, 2Faculty of Health Sciences, Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, 3Faculty of Medicine, University of Montreal, Montreal, QC, 4Faculty of Health Sciences, Department of Medicine, McMaster University, Hamilton, ON, Canada Background: Patient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers’ perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.Methods: We employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.Results: Thirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients’ roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.Conclusion: Concerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community. Keywords: patient oriented research, health policy, medical culture, patient-centered care, stroke

Introduction: While integrated care programs are proliferating around the world, rigorous measurement and evaluation of the intended and unintended effects of these programs are rare outside of the context of specific research programs. There are a number of reasons for the lack of evaluation including implementation without regard to measurement and evaluation, a lack of funding for evaluation activity, and challenges associated with measurement and evaluation in complex interventions. As a result, most research on integrated care is descriptive including case studies that most often summarize what was implemented, in some cases how it was implemented, but far less often what outcomes were achieved. Approach: We describe an evaluation framework for integrated care. It includes multiple components of evaluation (implementation, reporting and feedback, methods and measures) and a host of supplementary tools for measuring successful implementation of integrated care. The broad approach is to use rapid-cycle realist-informed evaluation methodology inclusive of implementation science, person-centred evaluation and comparative-effectiveness methodology. The approach to evaluation adds value and must be adaptable to local variations in models and organizational approaches to integrating care. Evaluation is framed into four components: Implementation: The evaluation of integrated care must first assess the implementation of new models of delivery, including description of the policy and organizational context of providers. Drawing from approaches taken including the Consolidated Framework for Implementation Research, evaluation is best begun parallel with the implementation of new models of integrated care allowing for early successes and challenges or barriers to be identified. Program operational monitoring: Second, programs themselves need to set out key measure of performance. A logic model for program implementation may be a particularly useful way to ensure that the program design will enable desired outcomes and ensure the essential component of the logic model are measured. Patient-centred assessment: The third major component of evaluation is patient-centred measurement including patient reported outcome and patient reported experience measures. Ultimately, patients themselves are the best target for measurement of integrated care. We will address essential domains for measurement of patient and caregiver outcomes and patient and caregiver experience. Outcome evaluation: Finally outcome evaluation is an essential activity. While the most rigorous form of outcome evaluation might involve experimental designs, the focus here is primarily on quasi-experimental approaches. Conclusion: This presentation describes a comprehensive framework for realist-informed rapid-cycle evaluations for integrated care programs. The framework is used to evaluate integrated care. Requirements for Implementation of Evaluation will also be discussed