"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. SETTING AND PARTICIPANTS: Twenty-one patients with various chronic conditions completed one year of training in adapted qualitative research methods, including an internship where they designed and conducted five peer-to-peer inquiries into a range of health experiences. MAIN OUTCOME MEASURES: Outcomes were continually monitored and evaluated using an Outcome Mapping framework, in combination with grounded theory analysis, based on data from focus groups, observation, documentation review and semi-structured interviews (21 patient researchers, 15 professional collaborators). RESULTS: Key stakeholders indicated the increased capacity of patients to engage in health-care research and planning, and the introduction and acceptance of new, collaborative roles for patients in health research. The uptake of new patient roles in health-care planning began to impact attitudes and practices. CONCLUSIONS: Patient researchers become "part of the team" through cultural and relationship changes that occur in two convergent directions: (i) building the capacity of patients to engage confidently in a dialogue with clinicians and decision makers, and (ii) increasing the readiness for patient engagement uptake within targeted organizations.

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. OBJECTIVE: To explore perspectives of South Asian community members towards ACP. DESIGN: Peer-to-peer inquiry. South Asian community members who graduated from the Patient and Community Engagement Research programme (PaCER) at the University of Calgary utilized the PaCER method (SET, COLLECT and REFLECT) to conduct a focus group, family interviews and a community forum. SETTING AND PARTICIPANTS: Fifty-seven community-dwelling men and women (22-86 years) who self-identified with the South Asian community in Calgary, Alberta, Canada. RESULTS: The concept of ACP was mostly foreign to this community and was often associated with other end-of-life issues such as organ donation and estate planning. Cultural aspects (e.g. trust in shared family decision making and taboos related to discussing death), religious beliefs (e.g. fatalism) and immigration challenges (e.g. essential priorities) emerged as barriers to participation in ACP. However, participants were eager to learn about ACP and recommended several engagement strategies (e.g. disseminate information through religious institutions and community centres, include families in ACP discussions, encourage family physicians to initiate discussions and translate materials). CONCLUSIONS: Use of a patient engagement research model proved highly successful in understanding South Asian community members' participation in ACP.

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. Trained patient-researchers conducted the study via a three-phase approach using focus groups and semi-structured interviews and employing grounded theory methodology. RESULTS: Twenty patients discharged within one year of a non-ST elevation acute coronary syndrome participated in the study. Several common themes emerged. First, patients characterized the admission and early treatment of ACS as a rapidly unfolding process where they had little control. Participants felt they played a passive role in early phase decision-making. Furthermore, participants described feeling reduced capacity for decision-making owing to fear and mental stress from acute illness, and therefore most but not all participants were relieved that expert clinicians made decisions for them. Finally, once past the emergent phase of care, participants wanted to retake a more active role in their treatment and follow-up plans. CONCLUSIONS: Patients admitted with ACS often do not take an active role in initial clinical decisions, and are satisfied to allow the medical team to direct early phase care. These results provide important insight relevant to designing patient-centered interventions in ACS and other urgent care situations.

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. Data were collected using tape recordings, field notes and student assignments. These were analyzed using open and selective coding, memoing, categorizing themes. RESULTS: Patients' education level (from high school to PhD), cultural background (immigrant experience, seniors), employment (employed full or part time, receiving disability benefits or retired), age (late 30 s-75) and gender (17 women and four men) were diverse. Main categories (emancipating patient experience; qualifying for research; leading sitting down; working data together; seeding change) are organized by the dialectic of co-creation as the roles of patient and researcher merge. A theoretical model is proposed. DISCUSSION: The theoretical model provides a glimpse into the process of merging two distinct roles of patient and researcher and in the process unleashes a force for change. CONCLUSIONS: The emergence of a dialectic from polar opposite roles is difficult to locate in health or other institutions where power differentials exist but there are indications that this new role might become a template for other merged roles in patient-led medical teams.

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. METHODS: A 'World Café' format encouraged the exploration of three 'menu' questions' in small groups at round tables. Views, opinions and concerns were captured. A thematic analysis was undertaken, and key themes listed. RESULTS: Sixty conference attendees participated in the 'PE Café', which lasted for 90 min. A diversity of experience was communicated, with most participants positive about the potential for PE. Similarities and differences in approaches, barriers and solutions were identified. However, a key message focused on the uncertainty about how to effectively engage with patients throughout the research process. Moreover, the lack of evidence-base demonstrating the impact of PE was a significant concern. No patient partners participated in the meeting. CONCLUSION: This study describes the first international exploration of PE in HRQL and PRO research. Discussions highlighted that, in the absence of good practice guidelines, a framework or toolkit of how to embed PE within HRQL and PRO research is required. Moreover, this framework should support the rigorous evaluation of PE impact. ISOQOL should be instrumental in taking these ideas forward, actively engaging with patient partners towards shaping a future ISOQOL PE strategy.

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. The bilingual researcher has a great advantage of expertise and clear vision in the cross-cultural ethical environment. However, such clarity of the ethical vision can cause many reasonable doubts, because it might not fully fit into the framework of standardized, rational ethics. The author shows that the dualism of the bilingual researcher's position can either induce caution or carry solutions, but both aspects of this role contribute to its essential significance for good cross-cultural knowledge exchange.

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. OA patients (N = 25) participated in a three-step peer-to-peer process: a focus group clarified and explored the topic ("set"), and guided the creation of the interview guide used in the second phase ("collect"). Using a collaborative analysis process, the researchers identified eight concepts that they then brought to a last focus group ("reflect"). Here, participants reviewed the findings, identifying implications for arthritis care in Alberta, Canada. RESULTS: An overarching theme of "supporting us in managing a meaningful life with OA" was underpinned by three components of quality care: (1) right knowledge-specific and detailed knowledge and information; (2) right professional support-ongoing access to health professionals with OA expertise; and (3) right professional relationship-a partnership with health professionals who help them develop and revise personal self-management plans. CONCLUSION: Peer-to-peer research informed and challenged the research team and stakeholders to consider the need for upstream support for OA patients. Results are helping to transform arthritis care, shifting the health system from an acute episodic model to one that meets the needs of the growing number of patients with chronic diseases.

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. Separate blinded qualitative researchers conducted an independent analysis. RESULTS: Participants described three phases in the patient/family "ICU journey"; admission to ICU, daily care in ICU, and post-ICU experience. Admission to ICU was characterized by family shock and disorientation with families needing the presence and support of a provider. Participants described five important elements of daily care: honoring the patient's voice, the need to know, decision-making, medical care, and culture in ICU. The post-ICU experience was characterized by the challenges of the transition from ICU to a hospital ward and long-term effects of critical illness. These "ICU journey" experiences were described as integral to appropriate interactions with the care team and comfort and trust in the ICU, which were perceived as essential for a community of caring. Participants provided suggestions for improvement: 1) provide a dedicated family navigator, 2) increase provider awareness of the fragility of family trust, 3) improve provider communication skills, 4) improve the transition from ICU to hospital ward, and 5) inform patients about the long-term effects of critical illness. Analyses by independent qualitative researchers identified similar themes. CONCLUSIONS: Patient and family member-led research is feasible and can identify opportunities for improving care.