Engaging critically: exploring the varying roles of lived experience advisors in an implementation science study on management of opioid prescribing.

Involvement of individuals with lived experience, also called "patient partners", is a key element within implementation science, the study of how to put evidence into practice. While conducting a 4-year implementation study focused on improving physician management of opioid prescribing, our research team worked closely with Lived Experience Advisors (LEAs). LEAs were involved throughout the study, including developing patient-facing recruitment material, informing the analysis of results, and as a regular reminder of the real-world impact of this work. However, through regular critical reflection, we acknowledged that we were still uncertain how to articulate the impact of LEA involvement. As a team, we continually discussed why and how people with lived experience were involved in this study. We probed ill-defined concepts such as "patient perspective", which was particularly complex for a study focused on changing physician behaviour with indirect impact on patients. This critical reflection strengthened trust and rapport between team members (characteristics deemed essential to meaningful patient involvement), while underscoring the value of including concerted time to explore the muddier aspects of engagement. In short, patient engagement did not proceed as smoothly as planned. We advocate that "best practices" in the engagement of people with lived experience include regularly setting aside time outside of practical study tasks to interrogate complex aspects of patient engagement, including reflecting on how and why individuals with lived experience are involved.

Involvement of individuals with lived experience, also called "patient partners", is often a required element of applied research. Although there is a lot of guidance on how to engage individuals with lived experience, there is no single best-practice that always applies. Each team is different and must adapt to meet the needs of their study and team. While conducting a 4-year study focused on improving physician management of opioid prescribing, our research team worked closely with Lived Experience Advisors (LEAs). The LEAs were involved in developing patient-facing recruitment material, informing the analysis of results, and were a regular reminder of the real-world impact of this work. As a team, we continually discussed why and how individuals with lived experience were involved in this study and probed concepts such as "patient perspective", which is complex in a study focused on changing physician behaviour. Setting aside time to not just work on a task but to critically reflect and ask questions led to new insights into why and how we do this work. For example, one of the patient handouts that was co-designed with patients and praised by some physicians we interviewed, was found by LEAs to be objectifying and lacking nuance, which further highlighted how the same material can be received in different ways. Our discussions also helped build trust and rapport, which are characteristics deemed essential to meaningful patient involvement. We advocate for study teams to dedicate time to interrogate the less straightforward aspects of patient engagement. In other words - "embrace the messiness".

Why and how to use patient-oriented research to promote translational research.

As we discussed in our first editorial in the December 2018 issue (Polaha & Sunderji, 2018), an emerging science of knowledge translation (also known as implementation and dissemination science) aims to bridge the disconnect between evidence and practice. Researchers are increasingly engaging with knowledge users and other stakeholders as a key strategy to promote uptake. This may include policymakers, payers, and-the focus of this editorial-patients. Patient-oriented research is featured in national research agendas around the world including in Canada (Canadian Institutes of Health Research, 2018) and the United States (Patient-Centered Outcomes Research Institute, see https://www.pcori.org/), in part as it may contribute one solution to the "bench to bedside" gap (Greenhalgh, Jackson, Shaw, & Janamian, 2016; Jull, Giles, & Graham, 2017; McGavin, 2017). In this editorial, we provide a general introduction to research, its potential, and its realized value. We also suggest strategies for conducting patient-oriented research effectively, including a description of common barriers and how they can be dealt with. We hope this background will inspire you to get started with patient-oriented research and to learn more, as well as to share your patient-oriented research through Families, Systems, & Health. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Negotiating Tensions Between Theory and Design in the Development of Mailings for People Recovering From Acute Coronary Syndrome.

BACKGROUND: Taking all recommended secondary prevention cardiac medications and fully participating in a formal cardiac rehabilitation program significantly reduces mortality and morbidity in the year following a heart attack. However, many people who have had a heart attack stop taking some or all of their recommended medications prematurely and many do not complete a formal cardiac rehabilitation program. OBJECTIVE: The objective of our study was to develop a user-centered, theory-based, scalable intervention of printed educational materials to encourage and support people who have had a heart attack to use recommended secondary prevention cardiac treatments. METHODS: Prior to the design process, we conducted theory-based interviews and surveys with patients who had had a heart attack to identify key determinants of secondary prevention behaviors. Our interdisciplinary research team then partnered with a patient advisor and design firm to undertake an iterative, theory-informed, user-centered design process to operationalize techniques to address these determinants. User-centered design requires considering users' needs, goals, strengths, limitations, context, and intuitive processes; designing prototypes adapted to users accordingly; observing how potential users respond to the prototype; and using those data to refine the design. To accomplish these tasks, we conducted user research to develop personas (archetypes of potential users), developed a preliminary prototype using behavior change theory to map behavior change techniques to identified determinants of medication adherence, and conducted 2 design cycles, testing materials via think-aloud and semistructured interviews with a total of 11 users (10 patients who had experienced a heart attack and 1 caregiver). We recruited participants at a single cardiac clinic using purposive sampling informed by our personas. We recorded sessions with users and extracted key themes from transcripts. We held interdisciplinary team discussions to interpret findings in the context of relevant theory-based evidence and iteratively adapted the intervention accordingly. RESULTS: Through our iterative development and testing, we identified 3 key tensions: (1) evidence from theory-based studies versus users' feelings, (2) informative versus persuasive communication, and (3) logistical constraints for the intervention versus users' desires or preferences. We addressed these by (1) identifying root causes for users' feelings and addressing those to better incorporate theory- and evidence-based features, (2) accepting that our intervention was ethically justified in being persuasive, and (3) making changes to the intervention where possible, such as attempting to match imagery in the materials to patients' self-images. CONCLUSIONS: Theory-informed interventions must be operationalized in ways that fit with user needs. Tensions between users' desires or preferences and health care system goals and constraints must be identified and addressed to the greatest extent possible. A cluster randomized controlled trial of the final intervention is currently underway.

Facebook as a tool for communication, collaboration, and informal knowledge exchange among members of a multisite family health team.

OBJECTIVE: To implement and evaluate a private Facebook group for members of a large Ontario multisite Family Health Team (FHT) to facilitate improved communication and collaboration. DESIGN: Program implementation and subsequent survey of team members. SETTING: A large multisite FHT in Toronto, Ontario. PARTICIPANTS: Health professionals of the FHT. MAIN OUTCOME MEASURES: Usage patterns and self-reported perceptions of the Facebook group by team members. RESULTS: At the time of the evaluation survey, the Facebook group had 43 members (37.4% of all FHT members). Activity in the group was never high, and posts by team members who were not among the researchers were infrequent throughout the study period. The content of posts fell into two broad categories: 1) information that might be useful to various team members and 2) questions posed by team members that others might be able to answer. Of the 26 team members (22.6%) who completed the evaluation survey, many reported that they never logged into the Facebook page (16 respondents), and never used it to communicate with team members outside of their own site of practice (19 respondents). Only six respondents reported no concerns with using Facebook as a professional communication tool; the most frequent concerns were regarding personal and patient privacy. CONCLUSION: The use of social media by health care practitioners is becoming ubiquitous. However, the issues of privacy concerns and determining how to use social media without adding to provider workload must be addressed to make it a useful tool in health care.