Medicine and Health Sciences Commons^™

Patient Engagement In An Academic Community-Based Primary Care Practice’S Management Committee: A Case Study, Emmanuelle Trépanier, Marie-Pascale Pomey, Paule Lebel

Patient Experience Journal

Patient engagement in primary care has been the focus of many studies; however, little research has evaluated its added value to organisational management in an academic community-based primary care practice (ACBPCP). In 2017, managers of an ACBPCP in Montreal, Canada, decided to integrate patients into the organization’s management committee to enhance the quality and relevance of decision-making for clinical services, education and research.

Objectives were to 1) assess patients’ role and influence on an ACBPCP management committee’s decision-making process; 2) identify the facilitators of and obstacles to patient involvement in this context; and 3) evaluate the impact of this innovative …

Motivations, Experiences, And Aspirations In Patient Engagement Of People Living With Metastatic Cancer, Patricia L. Stoop, Leslie Duran

Patient Experience Journal

The objective of this patient-led study was to explore the motivations, experiences, and aspirations of people living with metastatic cancer who volunteer in patient engagement. This qualitative study filled a gap in lived experience research about patient engagement by focusing on an oft ignored population – those living with metastatic cancer. We used a patient-oriented research approach throughout the research cycle from proposal development to data analysis. A Patient Partner helped develop the project proposal. We selected a qualitative descriptive design to best align with our patient-oriented research goals. The first author, a peer researcher with metastatic cancer, conducted semi-structured …

Consumer Representative Experiences Of Partnership With Health Workers In Australia, Coralie R. Wales, Judith A. Lababedi, Alison Coles, Philip Lee, Emma Clarke

Patient Experience Journal

We examine the experiences of Consumer Representatives participating in consumer engagement activities across a public health service in NSW, Australia. A team of Consumer Representatives and staff members use a participatory, constructivist paradigm and a hermeneutic phenomenological approach to analyse ten interviews with Consumer Representatives over three years 2017-2019, and three focus groups in 2020. We explore these experiences and identify the linked contextual factors from their points of view. Consumer Representatives were prepared to invest their time, but they needed respect. “Respect” from a consumer perspective was being meaningfully included, supported and heard, and activities needed to be purposeful …

Using Design-Thinking To Investigate And Improve Patient Experience, Jennifer Smiechowski, Megan Mercia, Kyle Kemp, Elizabeth Oddone Paolucci, Maria Santana, Rahim Kachra

Patient Experience Journal

Understanding and enhancing the patient experience can lead to improved healthcare outcomes. The purpose of this study was to capture a comprehensive and nuanced understanding of the patient experience on an inpatient medical teaching unit in order to identify key deficiencies and unmet needs. We then aim to implement a design-thinking methodology to find innovative ways to solve these deficiencies. Here we present the first two phases of this four-phased study. We retrospectively and prospectively collected quantitative data about patient experience with the Canadian Patient Experiences Survey-Inpatient Care. We then used this data to guide patient interviews. We identified several …

A Patient’S Narrative Of Engaging Hiv Care: Lessons Learned To Harness Resources And Improve Access To Care, David Lessard, Serge Vicente, Patrick Keeler, Bertrand Lebouché

Patient Experience Journal

In Canada and the USA, about 30% of people with HIV are uninsured or not covered by government-subsidized health insurance. This paper presents a patient’s narrative of his experience being diagnosed with HIV and accessing care in the midst of his process of immigrating to and studying in Canada. The narrative explores how Vincent Croft (pseudonym) has coped with the chronicity of the infection and its associated social stigma, and the temporary solutions he found to access treatment. Engaging with healthcare providers, researchers, and other people living with HIV has allowed Croft to share his experience, including the barriers he …

Partnering With Patients To Design A Prehabilitation Program For Optimizing The Patient Experience Through General Surgery, Jacqueline Francis-Coad, Dale Edgar, Caroline E. Bulsara, Alix Barrett-Lennard, Kristine Owen, David Fletcher, Fiona Wood, Anne-Marie Hill

Patient Experience Journal

The objective of this study was to explore patients’ experiences when preparing for and undergoing general surgery at a large tertiary hospital. Findings aimed to inform the development of a prehabilitation program to empower patients to optimize their recovery and enhance their experience of general surgery. A qualitative exploratory research approach was utilized. Patients (>18 years) attending for elective general surgery between May and July 2018 were invited to participate. Four focus groups (n=18) and an interview were conducted to reach saturation. Deductive content analysis was used to map responses against theoretical determinants of health behavior change. Patients described …

Safety Participation At The Direct Care Level: Results Of A Patient Questionnaire, Lenora Duhn, Nathaniel Gumapac, Jennifer Medves

Patient Experience Journal

Understanding how patients can be engaged in safety-related activities at the direct care level is of current relevance given global efforts to reduce harm in hospitals. As part of a multiphase study, including a descriptive, exploratory qualitative study (Duhn & Medves, 2018), patients were asked to respond to a brief questionnaire to quantify how they viewed their patient-reported safety participation behaviours while in hospital. This paper is a summary of those responses. The 8-item questionnaire was, in part, used to help address a secondary research question of the larger qualitative study, specifically: What behaviours do patients report in promoting their …

The Paradoxical Injunctions Of Partnership In Care: Patient Engagement And Partnership Between Issues And Challenges, Khayreddine Bouabida, Marie-Pascale Pomey, Genevieve Cyr, Ursulla Aho-Glele, Breitner Gomes Chaves

Patient Experience Journal

Partnership in care and patient engagement is an expanding approach and tremendously promising for improving the quality of healthcare services. However, the approach could be subject to many issues and challenges of various kinds. In this paper, we develop a reflection of the challenges and issues that the approach of patient engagement and partnership in care is facing. After a brief presentation of certain key concepts of partnership in care and patient engagement, we discuss in this paper the most worthy of consideration issues that we identified and classified as follows: Political, Financial, Organizational, Clinical, and Ethical Issues. We then …

A Call To Action For Human Experience, Jason A. Wolf

Patient Experience Journal

As we open the 8th volume of Patient Experience Journal (PXJ), we all stand in a world much different than we did just a year ago. A year ago we were in the height of crisis, facing unknowns and uncertainty. We didn’t know if we were tackling an issue that was weeks, months or years in front of us. We were truly not even sure what tomorrow might bring. As I shared in opening Volume 7, we were already experiencing something special in the midst of real tragedy. We were seeing light peeking through heavy clouds. I opened that issue …