Patient partner compensation in research and health care: the patient perspective on why and how

As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to come up. The authors are 4 patients who are highly active in patient and public involvement initiatives internationally. Through our exclusive patient perspective, we provide insight into the reasoning and motivation that many patients are now awakening to as to why lived experience is a value that organizations need to recognize and support in concrete ways. We explore the core principles that an organization needs to consider and adopt when developing compensation policies for their engagement practices with patients and family members. Organizations face an ongoing challenge to achieve diversity among their patient advisors so that all segments of the community they serve are represented. In particular, marginalized populations are confronted with financial and social determinants that are often barriers to full inclusion. Comprehensive compensation policies overcome these barriers. While there is some guidance available from organizations like PCORI, the predominant culture in health care resists the notion of compensation. In addition to defining core principles behind compensation, we outline how to put those principles into practice in a valid, credible manner that honours and values the contributions of patients and families whether in quality improvement or health research. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens

Storytelling at board meetings: A case study of co-developing recommendations

In healthcare, stories shared by patients often provide details and insights into experiences of illness and care. Stories are a way to educate healthcare providers and others to improve care and systems to become more patient and family centred and to better meet patients’ needs and priorities. Telling stories may bring benefits to both storytellers and audience members but also presents risks of harm. A reflective storytelling practice aims to honor stories and storytellers by ensuring there is time to prepare, reflect, learn, ask questions, and engage in dialogue with the storyteller to explore what went well and where there are learning and improvement opportunities. Healthcare Excellence Canada (HEC) is a pan-Canadian health organization focused on improving the quality and safety of care in Canada. HEC commits to engage patients, caregivers, and communities and aims to develop practices and structures to enable engagement activities. At the request of the HEC Board, the Patient Engagement and Partnerships team co-developed recommendations on the process for how best to meaningfully share stories at Board meetings, including stories from those leading, providing, and receiving care. This Case Study outlines the process HEC used to co-develop storytelling recommendations, focusing on a trauma-informed approach to create safe spaces for preparing, learning from and reflecting on stories, to clearly articulate their purpose, and to ensure the locus of control for storytelling rests with the storytellers. This Case Study shares these recommendations and invites other organizations to use these recommendations and/or adapt them within their own context. Experience Framework This article is associated with the Infrastructure & Governance lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

Patient and family partner involvement in staff interviews: Designing, implementing, and evaluating a new hiring process

Healthcare organizations in Canada and the United States are seeking to enhance their ability to offer patient and family centred care (PFCC). One aspect of PFCC is the participation of Patient and Family Partners (PFPs) in a variety of roles within healthcare organizations. This article describes the creation and evaluation of a hiring process that utilized a PFCC interview tool (PFCCIT) and collaborated with PFPs in interviewing candidates for healthcare positions. An evaluation of the new hiring process was designed, including an on-line survey of candidates and semi-structured interviews with healthcare leaders and PFPs. Survey results indicated candidates felt the new process helped them understand the importance of PFCC at the organization. In interviews with leaders, comments were overwhelmingly positive, with leaders urging the spread of this hiring process throughout the organization. Similarly, the four PFPs who were interviewed felt their participation was valuable, and useful in furthering the organization’s commitment to PFCC. The implementation of a staff hiring process utilizing PFPs and the PFCCIT provides a valuable tool for healthcare organizations working to enhance PFCC to better meet the needs of their patients and families. Further study is required to validate the long-term impact of this initiative and determine whether it improves recruitment and retention of staff sharing the organization’s commitment to PFCC

Controlled English For International Technical Communication

This paper describes a project to develop and use intelligent software to automate the authoring of technical documents written in controlled English, such as Simplified English (SE). SE is a subset of English with a limited vocabulary and a set of writing rules; its use in aircraft maintenance manuals makes them so clearly written that translation is not needed. The paper also describes courseware for rapidly teaching controlled English to those with limited English language ability. Finally, it presents implications of using controlled English for international technical communication and language training, and describes how the computer techniques being developed in our laboratory will facilitate this process

Alternates Peroxisomal Contents in Response to Trophic Conditions

is a model green microalga capable of heterotrophic growth on acetic acid but not fatty acids, despite containing a full complement of genes for β-oxidation. Recent reports indicate that the alga preferentially sequesters, rather than breaks down, lipid acyl chains as a means to rebuild its membranes rapidly. Here, we assemble a list of potential peroxins (PEXs) required for peroxisomal biogenesis to suggest that has a complete set of peroxisome biogenesis factors. To determine involvements of the peroxisomes in the metabolism of exogenously added fatty acids, we examined transgenic expressing fluorescent proteins fused to N- or C-terminal peptide of peroxisomal proteins, concomitantly with fluorescently labeled palmitic acid under different trophic conditions. We used confocal microscopy to track the populations of the peroxisomes in illuminated and dark conditions, with and without acetic acid as a carbon source. In the cells, four major populations of compartments were identified, containing: (1) a glyoxylate cycle enzyme marker and a protein containing peroxisomal targeting signal 1 (PTS1) tripeptide but lacking the fatty acid marker, (2) the fatty acid marker alone, (3) the glyoxylate cycle enzyme marker alone, and (4) the PTS1 marker alone. Less than 5% of the compartments contained both fatty acid and peroxisomal markers. Statistical analysis on optically sectioned images found that simultaneously carries diverse populations of the peroxisomes in the cell and modulates peroxisomal contents based on light conditions. On the other hand, the ratio of the compartment containing both fatty acid and peroxisomal markers did not change significantly regardless of the culture conditions. The result indicates that β-oxidation may be only a minor occurrence in the peroxisomal population in , which supports the idea that lipid biosynthesis and not β-oxidation is the primary metabolic preference of fatty acids in the alga

Chlamydomonas reinhardtii Alternates Peroxisomal Contents in Response to Trophic Conditions

Chlamydomonas reinhardtii is a model green microalga capable of heterotrophic growth on acetic acid but not fatty acids, despite containing a full complement of genes for β-oxidation. Recent reports indicate that the alga preferentially sequesters, rather than breaks down, lipid acyl chains as a means to rebuild its membranes rapidly. Here, we assemble a list of potential Chlamydomonas peroxins (PEXs) required for peroxisomal biogenesis to suggest that C. reinhardtii has a complete set of peroxisome biogenesis factors. To determine involvements of the peroxisomes in the metabolism of exogenously added fatty acids, we examined transgenic C. reinhardtii expressing fluorescent proteins fused to N- or C-terminal peptide of peroxisomal proteins, concomitantly with fluorescently labeled palmitic acid under different trophic conditions. We used confocal microscopy to track the populations of the peroxisomes in illuminated and dark conditions, with and without acetic acid as a carbon source. In the cells, four major populations of compartments were identified, containing: (1) a glyoxylate cycle enzyme marker and a protein containing peroxisomal targeting signal 1 (PTS1) tripeptide but lacking the fatty acid marker, (2) the fatty acid marker alone, (3) the glyoxylate cycle enzyme marker alone, and (4) the PTS1 marker alone. Less than 5% of the compartments contained both fatty acid and peroxisomal markers. Statistical analysis on optically sectioned images found that C. reinhardtii simultaneously carries diverse populations of the peroxisomes in the cell and modulates peroxisomal contents based on light conditions. On the other hand, the ratio of the compartment containing both fatty acid and peroxisomal markers did not change significantly regardless of the culture conditions. The result indicates that β-oxidation may be only a minor occurrence in the peroxisomal population in C. reinhardtii, which supports the idea that lipid biosynthesis and not β-oxidation is the primary metabolic preference of fatty acids in the alga

Solutions for Kids in Pain: A Knowledge Mobilization Network Built on a Foundation of Patient Partnership

Background: Patient engagement is an approach that is expected or required to be part of a project, initiative or network by many research funding organizations. Solutions for Kids in Pain (SKIP) is a national knowledge mobilization network in Canada that was competitively funded and built on a foundation of engaging with patients (children and youth) and caregivers (parents) in its mission and vision. At the core of SKIP’s foundation was the PatientsIncludedTM charter, on which it grew and evolved its patient engagement efforts. Main Body: SKIP’s mission is to mobilize evidence-based solutions for children’s pain management. Unique to its funding requirements, SKIP was co-led by an academic institution (Dalhousie University) and a knowledge user partner (Children’s Healthcare Canada). SKIP is hosted at the university, where its central administration team is located, with six knowledge mobilization hubs based in cities across Canada. Patient engagement has been crucial to SKIP’s work with patient partners included in SKIP’s governance, management, committees, and knowledge mobilization activities. This paper shares and provides context for SKIP’s approach to patient partnership. How SKIP tailored its approach depending on the specific project context is demonstrated with three case studies. These case studies include SKIP’s Patient and Caregiver Advisory Committee which also developed resources that others may wish to use, the Youth in Pain Project which led to open calls for partnerships and unique approaches to listening and undertaking patient-informed projects, and Canada’s first national health standard for Pediatric Pain Management, which was co-developed with patient partners. Each unique case study demonstrates foundational principles to SKIP’s patient partnership such as offering compensation, creating a safe space, and others. Conclusion: Over its lifespan, SKIP committed to and wove patient partnership throughout all aspects of its network. We share the evolution of and insights gained from SKIP’s patient partnership activities, including resources for others to take and make their own. We encourage other research and knowledge mobilization networks to learn from this important patient partnership work and adopt and adapt what we share to their own contexts

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations

Abstract Background Inclusiveness, Support, Mutual Respect and Co‐Build are the four pillars of patient engagement according to the Strategy for Patient‐Oriented Research (SPOR). The aim of this manuscript is to describe the operationalization of these principles through the creation of a Patient Advisory Council (PAC) for the research study titled ‘Re‐Purposing the Ordering of Routine laboratory Tests (RePORT)’. Methods Researchers collaborated with the Alberta SPOR SUPPORT Unit (AbSPORU) Patient Engagement Team to create a diverse PAC. Recruitment was intentional and included multiple perspectives and experiences. PAC meetings were held monthly, and patient research partners received support to function as co‐chairs of the PAC. Patient research partners were offered training, support and tailored modalities of compensation to actively engage with the PAC. Regular member check‐ins occurred through reflexivity and a formal evaluation of PAC member engagement. Results The PAC included between 9 and 11 patient research partners, principal investigator, research study coordinator, improvement scientist, resident physician and support members from the AbSPORU team. Twelve monthly PAC meetings were held during the first phase of the project. The PAC made course‐changing contributions to study design including study objectives, recruitment poster, interview guide and development of codes for thematic analysis. Patient research partners largely felt that their opinions were valued. Diversity in the PAC membership enhanced access to diverse patient participants. Furthermore, support for co‐chairs and patient research partner members enabled active engagement in research. In addition, a culture of mutual respect facilitated patient partner engagement, and co‐design approaches yielded rich research outputs. Conclusions Collaboration between research teams and Patient Engagement Teams can promote effective patient engagement through a PAC. Deliberate and flexible strategies are needed to manage the PAC to create an ecology of Inclusiveness, Support, Mutual Respect, and Co‐Build for meaningful patient engagement. Patient or Public Contribution Patient research partners were involved in the decision to write this manuscript and collaborated equitably in the conception and development of this manuscript, including providing critical feedback. Patient research partners were active members of the PAC and informed the research project design, participant recruitment strategies, data collection and analysis, and will be involved in the implementation and dissemination of results. They are currently involved in the co‐development of a patient engagement strategy using a Human‐Centered Design process

Patient perceptions of in‐hospital laboratory blood testing: A patient‐oriented and patient co‐designed qualitative study

Abstract Background Indiscriminate use of laboratory blood testing in hospitals contributes to patient discomfort and healthcare waste. Patient engagement in low‐value healthcare can help reduce overuse. Understanding patient experience is necessary to identify opportunities to improve patient engagement with in‐hospital laboratory testing. Objectives To understand patient experience with the process of in‐hospital laboratory blood testing. Methods We used a qualitative study design via semistructured interviews conducted online or over the phone. Participants were adult patients or family members/caregivers (≥18 years of age) with a recent (within 12 months of interview) experience of hospitalization in Alberta or British Columbia, Canada. We identified participants through convenience sampling and conducted interviews between May 2021 and June 2022. We analysed transcripts using thematic content analysis. Recruitment was continued until code saturation was reached. Results We interviewed 16 participants (13 patients, 1 family member and 2 caregivers). We identified four themes from patients' experiences of in‐hospital laboratory blood testing: (i) patients need information from healthcare teams about expected blood testing processes, (ii) blood draw processes should consider patient comfort and preferences, (iii) patients want information from their healthcare teams about the rationale and frequency of blood testing and (iv) patients need information on how their testing results affect their medical care. Conclusion Current laboratory testing processes in hospitals do not facilitate shared decision‐making and patient engagement. Patient engagement with laboratory testing in hospitals requires an empathetic healthcare team that provides clear communication regarding testing procedures, rationale and results, while considering patient preferences and offering opportunities for involvement. Patient or Public Contribution We interviewed 16 patients and/or family members/caregivers regarding their in‐hospital laboratory blood testing experiences. Our findings show correlations between patient needs and patient recommendations to make testing processes more patient‐centred. To bring a lived‐experience lens to this study, we formed a Patient Advisory Council with 9–11 patient research partners. Our patient research partners informed the research design, co‐developed participant recruitment strategies, co‐conducted data collection and informed the data analysis. Some of our patient research partners are co‐authors of this manuscript