A patient-led, peer-to-peer qualitative study on the psychosocial relationship between young adults with inflammatory bowel disease and food.

Background: Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under-supported in clinical settings and research.

Objectives: This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient-led research process.

Patients' Use of Mobile Health for Self-management of Knee Osteoarthritis: Results of a 6-Week Pilot Study.

Background: In a previous study, a prototype mobile health (mHealth) app was co-designed with patients, family physicians, and researchers to enhance self-management and optimize conservative management for patients with mild to moderate knee osteoarthritis (OA).

Objective: This study aims to evaluate the overall usability, quality, and effectiveness of the mHealth app prototype for aiding knee OA self-management from the perspectives of patients with OA and health care providers (HCPs).

Methods: Using methods triangulation of qualitative and quantitative data, we conducted a pilot evaluation of an mHealth app prototype that was codeveloped with patients and HCPs.

Co-Design in the Development of a Mobile Health App for the Management of Knee Osteoarthritis by Patients and Physicians: Qualitative Study.

Background: Despite a doubling of osteoarthritis-targeted mobile health (mHealth) apps and high user interest and demand for health apps, their impact on patients, patient outcomes, and providers has not met expectations. Most health and medical apps fail to retain users longer than 90 days, and their potential for facilitating disease management, data sharing, and patient-provider communication is untapped. An important, recurrent criticism of app technology development is low user integration design.

A co-designed framework to support and sustain patient and family engagement in health-care decision making.

Background: Patient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co-design a patient and family engagement framework.

Understanding the motivations of patients: A co-designed project to understand the factors behind patient engagement.

Background: Large-scale transformation depends on effective engagement of diverse stakeholders. With the evolution of the role of the 'patient partner' in health-care decision making, understanding the motivations of these individuals is essential to the success of engagement initiatives. This study reports on motivational factors associated with patient engagement in health care.

Understanding patient engagement in health system decision-making: a co-designed scoping review.

Background: With healthcare striving to shift to a more person-centered delivery model, patient and family involvement must have a bigger role in shaping this. While many initiatives involving patients and family members focus on self-care, a broader understanding of patient participation is necessary. Ensuring a viable and sustainable critical number of qualified patients and family members to support this shift will be of utmost importance.

Qualitative study to elicit patients' and primary care physicians' perspectives on the use of a self-management mobile health application for knee osteoarthritis.

Objective: To elicit perspectives of family physicians and patients with knee osteoarthritis (KOA) on KOA, its treatment/management and the use of a mobile health application (app) to help patients self-manage their KOA.

Design: A qualitative study using Cognitive Task Analysis for physician interviews and peer-to-peer semistructured interviews for patients according to the Patient and Community Engagement Research (PaCER) method.

Setting: Primary care practices and patient researchers at an academic centre in Southern Alberta.

The voice of patients in system redesign: A case study of redesigning a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis.

Background: The published literature demands examples of health-care systems designed with the active engagement of patients to explore the application of this complex phenomenon in practice.

Methods: This case study explored how the voice of patients was incorporated into the process of redesigning an element of the health-care system, a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis (RA)-centralized intake. The phenomenon of patient engagement using "patient and community engagement researchers" (PaCERs) in research and the process of redesigning centralized intake were selected as the case.

Patient and family engagement in Alberta Health Services: Improving care delivery and research outcomes.

Engaging patients and families in research and the design of quality improvement is an essential component of Patient and Family Centred Care (PFCC). Alberta Health Services (AHS) has been engaging patients and families to promote a cultural shift towards PFCC. The AHS trains patient and family advisors to share their experiences and encourages staff to work with advisors to co-design improvements in care.

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.

Patients as partners in Enhanced Recovery After Surgery: A qualitative patient-led study.

Objectives: Explore the experience of patients undergoing colorectal surgery within an Enhanced Recovery After Surgery (ERAS) programme. Use these experiential data to inform the development of a framework to support ongoing, meaningful patient engagement in ERAS.

Design: Qualitative patient-led study using focus groups and narrative interviews.

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.

The language of recovery: how effective communication of information is crucial to restructuring post-stroke life.

Background: Providing appropriate and effective information to people with stroke and their families has been identified as a key component to successful practice. Researchers continue to focus on "lack of information" as being the lack of specific technical medical information rather than the communication of practical knowledge and how people use that knowledge to restructure life after stroke. To meet patients' expectations and achieve better outcomes in stroke, professionals need access to communication theory, research, and training.

Communication in stroke: the overlooked rehabilitation tool.

People who have had a stroke and their families at every stage post-stroke state that they require more information. They wish to be informed about all aspects of their stroke and their care and be involved in decision-making. Several evidence-based reviews have found that information provision in stroke is inadequate and that future work should address the expressed needs of stroke survivors and families.