Narratives in the Journal of Medical Imaging and Radiation Sciences: Publishing stories in an academic journal.

Healthcare narratives can be used for education to elicit an emotional or affective response, develop critical thinking, and gain perspective on individuals' experiences with life and illness to cultivate person-centered care. This editorial describes the recent experience of the Journal of Medical Imaging and Radiation Sciences (JMIRS) in developing a new narrative submission format. The processes of engaging and supporting patient authors as well as creating a more accessible submission and review process are presented. Finally, the paper discusses the emerging impact of published narratives and the benefit of working with patients as experts and authors.

Reflections on patient engagement by patient partners: how it can go wrong.

As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to "meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation" with patient partners as members of teams, rather than participants in research or clinical care. While much has been written about the benefits of patient engagement, it is important to accurately document and share what we term 'patient engagement gone wrong.' These examples have been anonymized and presented as four statements: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners. The examples provided are intended to demonstrate that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light. This article is not intending to lay blame, rather to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these conversations as that is the only way to change these all too recognizable examples, and which will lead to better project outcomes and experiences for all team members.

We are six patient partners in Canada who aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to "meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation," where patient partners are members of the teams, rather than participants in research or those seeking clinical care. It appears more has been written on the benefits rather than the risks of patient engagement and we feel it is important to document and share what we call 'patient engagement gone wrong.' We have anonymized these examples and sorted them into four statements: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners. These statements and their examples are meant to show that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light. With this commentary, we do not mean to lay blame, and instead wish to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these examples, as that is the only way to change these all too recognizable statements, and which will lead to better project outcomes and experiences for all team members.

Availability of researcher-led eHealth tools for pain assessment and management: barriers, facilitators, costs, and design.

INTRODUCTION: Numerous eHealth tools for pain assessment and management have been developed and evaluated with promising results regarding psychometric properties, efficacy, and effectiveness. Although considerable resources are spent on developing and evaluating these tools with the aim of increasing access to care, current evidence suggests they are not made available to end users, reducing their impact and creating potential research waste. METHODS: This study consisted of 2 components: (1) a systematic review of eHealth tools for pediatric pain assessment and/or management published in the past 10 years, and (2) an online survey, completed by the authors of identified tools, of tool availability, perceived barriers or facilitators to availability, grant funding used, and a validated measure of user-centeredness of the design process (UCD-11). RESULTS: Ninety articles (0.86% of citations screened) describing 53 tools met inclusion criteria. Twenty-six survey responses were completed (49.06%), 13 of which (50.00%) described available tools. Commonly endorsed facilitators of tool availability included researchers' beliefs in tool benefits to the target population and research community; barriers included lack of infrastructure and time. The average cost of each unavailable tool was $314,425.31 USD ($3,144,253.06 USD total, n = 10). Authors of available tools were more likely to have followed user-centered design principles and reported higher total funding. CONCLUSION: Systemic changes to academic and funding structures could better support eHealth tool availability and may reduce potential for research waste. User-centered design and implementation science methods could improve the availability of eHealth tools and should be further explored in future studies.