Patient perspectives on engagement in decision-making in early management of non-ST elevation acute coronary syndrome: a qualitative study.

Background: Surveys of patients suggest many want to be actively involved in treatment decisions for acute coronary syndromes. However, patient experiences of their engagement and participation in early phase decision-making have not been well described.

Methods: We performed a patient led qualitative study to explore patient experiences with decision-making processes when admitted to hospital with non-ST elevation acute coronary syndrome.

"Part of the Team": Mapping the outcomes of training patients for new roles in health research and planning.

Background: A patient research internship (Patient and Community Engagement Research program-PaCER) was created to support a provincial commitment by Alberta Health Services' Strategic Clinical Networks to find new ways to engage patients in a new interdisciplinary organization to support evidence-informed improvements in clinical outcomes across the health system.

Objective: Implement and test a new research method and training curriculum to build patient capacity for engagement in health through peer-to-peer research.

Design: Programme evaluation using Outcome Mapping and the grounded theory method.

Understanding advance care planning within the South Asian community.

Background: Advance care planning (ACP) is a process of reflection on and communication of a person's future health-care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community.

Patient and Family Member-Led Research in the Intensive Care Unit: A Novel Approach to Patient-Centered Research.

Introduction: Engaging patients and family members as partners in research increases the relevance of study results and enhances patient-centered care; how to best engage patients and families in research is unknown.

Methods: We tested a novel research approach that engages and trains patients and family members as researchers to see if we could understand and describe the experiences of patients admitted to the intensive care unit (ICU) and their families. Former patients and family members conducted focus groups and interviews with patients (n = 11) and families of surviving (n = 14) and deceased (n = 7) patients from 13 ICUs in Alberta Canada, and analyzed data using conventional content analysis.

Support for Living a Meaningful Life with Osteoarthritis: A Patient-to-Patient Research Study.

Objective: This study addresses the perspectives of patients with osteoarthritis (OA) about the gap between available support and their needs, with a focus on patient experience and what is important to them. It was a key component of a research initiative to co-develop an evidence-based model for central referral from primary to specialty care for arthritis patients.

Methods: Patients with OA and trained in engagement methods used adapted qualitative methods to co-design and conduct the study.

Building new roles and relationships in research: a model of patient engagement research.

Purpose: Patient engagement is influenced by institutional ideologies, professional attitudes and patient readiness to accept new, engaged roles. This article provides an opportunity to consider a new role for patients who are trained to conduct patient experience research using qualitative methods.

Methods: The emergence of the role of patient engagement researcher was studied using a grounded theory with 21 patients over one-year internship and 125 research participants.

Patient and public engagement in health-related quality of life and patient-reported outcomes research: what is important and why should we care? Findings from the first ISOQOL patient engagement symposium.

Purpose: Recent years have witnessed growing international interest in the active involvement, or engagement [patient engagement (PE)], of patients and the public in health services research. However, there is limited evidence of the extent or impact of PE in health-related quality of life (HRQL) and patient-reported outcomes (PRO) research. Therefore, in October 2013, the International Society for Quality of Life research (ISOQOL) hosted its first symposium, which sought to explore the potential for PE in this field.

Double vision uncertainty: the bilingual researcher and the ethics of cross-language research.

Translation is a significant factor in cross-language research and can make an overarching impact on research outcomes and ethical adequacy. In this article, the author examines ethical considerations of language translation and interpretation in human science research. The focus is narrowed to ethical aspects of research design in which a bilingual researcher assumes a double role, as an interpreter and translator in his or her inquiry with monolingual, non-English-speaking research participants.