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Purpose To provide an overview of PCORI's approach to engagement in research. Methods The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund patientcentered comparative effectiveness research. Requirements for research funding from PCORI include meaningful engagement of patients and other stakeholders in the research. PCORI's approach to engagement in research is guided by a conceptual model of patient-centered outcomes research (PCOR), that provides a structure for understanding engagement in research. Results To understand and improve engagement in research PCORI is learning from awardees and other stakeholders. Those efforts are described along with PCORI's capacity building and guidance to awardees via the Engagement Rubric. PCORI's unique model of engaging patients and other stakeholders in merit review of funding applications is also described. Additional support for learning about engagement in research is provided through specific research funding and through PCORI's major infrastructure initiative, PCORnet. Conclusion PCORI requires engagement of stakeholders in the research it funds. In addition PCORI engages stakeholders in activities including review of funding applications and establishment of CER research infrastructure through PCORnet. The comprehensive approach to engagement is being evaluated to help guide the field toward promising practices in research engagement.

BACKGROUND:While patient engagement can be beneficial for patient care, there are barriers to engaging patients. These barriers exist for health care organizations, for health care personnel, and for the patients themselves. Solutions to barriers are not well documented. OBJECTIVES:Our objective was to explore barriers to patient engagement efforts and their corresponding solutions. RESEARCH DESIGN:Qualitative interviews and site visits from a national sample of primary care facilities within the Veterans Health Administration were analyzed to understand patient engagement barriers and solutions. SAMPLING:We conducted a total of 155 phone and in-person semistructured interviews with primary care providers, mental health staff, social workers, pharmacists, patient advocates, health behavior coaches, and administrative staff at 27 Veterans Health Administration sites. Participants were asked to describe the obstacles they had to overcome in their efforts to improve patient engagement at their site. RESULTS:Barriers to patient engagement are overcome by strategically updating data analytics; enhancing organization-wide processes and procedures; being creative with space design, staff hiring, and time commitments; cultivating staff collaborations; and addressing patient care issues such as access, customer service, and patient education. A key component of successful implementation is to create a culture, supported by leadership that promotes patient engagement. CONCLUSIONS:Participants understood the patient centered approach, despite experiencing a lack of resources and training and could push through solutions to patient engagement barriers while working within the limits of their settings.

Background Meaningful patient engagement (PE) in medicines development and during the life cycle of a product requires all stakeholders have a clear understanding of respective expectations. Objective A qualitative survey was undertaken to understand stakeholder expectations. Design The survey explored 4 themes from the perspective of each stakeholder group: meaning, views, expectations and priorities for PE. Participants were grouped into 7 categories: policymakers/regulators; health‐care professionals (HCPs); research funders; payers/purchasers/HTA; patients/patient representatives; pharmaceutical/life sciences industry; and academic researchers. Results Fifty‐nine interviews were conducted across a range of geographies, PE experience and job seniority/role. There was consensus across stakeholders on meaning of PE; importance of promoting PE to a higher level than currently; need for a more structured process and guidance. There was little consensus on stakeholder expectations and roles. Policymakers/regulators were expected by others to drive PE, create a framework and facilitate PE, provide guidelines of good practice and connect stakeholders, but this expectation was not shared by the policymakers/regulators group. HCPs were seen as the link between patients and other stakeholders, but HCPs did not necessarily share this view. Discussion and conclusions Despite broad stakeholder categories, clear themes emerged: there is no “leader”; no stakeholder has a clear view on how to meaningfully engage with patients; there are educational gaps; and a structure and guidance for PE is urgently required. Given the diversity of stakeholders, there needs to be multistakeholder collaborative leadership. Effective collaboration requires consensus on roles, responsibilities and expectations to synergize efforts to deliver meaningful PE in medicines life cycle.

Individuals with low health literacy (HL) are known to have poorer health outcomes and to have higher mortality rates compared to individuals with higher HL; hence, the improvement of HL is a key outcome in modern healthcare systems. Healthcare providers are therefore asked to support patients in becoming more and more engaged in their healthcare, thus augmenting their literacy skills. Our main hypothesis is that the well-known relationship between patients’ perceived autonomy supportive healthcare climate and HL skills is mediated by the Patient Health Engagement Model (PHE-model) which describes the patients’ progressive maturation of a psychological readiness to become active players in their healthcare. The purpose of this study was to formulate a hypothetical structural equation model (SEM) linking an autonomy-supportive healthcare climate to PHE-model and HL. A cross-sectional survey design was employed involving 1007 Italian chronic patients. The hypothetical model was tested using SEM to verify the hypothesized mediation of the PHE-model between autonomy-supportive healthcare climate and HL. Results show that the theoretical model has a good fit indexes and that PHE-model fully mediates the relationship between autonomy-supportive healthcare climate and HL. This finding suggests healthcare systems to implement a new paradigm where patients are supported to play an autonomous role in their own healthcare.

Background Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers (n = 5), and clinicians (n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages. Results PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data. Conclusion The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts. Lay Summary Engaging patients in research is encouraged. Yet, few qualitative research studies measure the impact of patient engagement (PE) at each research stage and from the point of view of all stakeholders. We studied two project groups to fill this research gap. Patient research partners (PRPs), researchers, and clinicians comprised each group. The two groups had the same objective to design and conduct a qualitative research project. We measured PE using three PE evaluation tools. All project group members were asked to complete the tools at three time points in the study. PRPs influenced and impacted many aspects of their project including the design, process, and approach of the qualitative research.

When Taiichi Ohno introduced ‘Stop the Line’ manufacturing, people were sceptical.1 2 Each assembly line worker was entrusted with the responsibility to push a red button to stop the line if she/he noticed something wrong. [...]patients themselves, increasingly championed as ‘members of the team’ and ‘co-producers’ of health, are not always given a button nor taught how to use it.3–5 Patients and families—vigilant stakeholders—hold unique knowledge and can make important contributions to patient safety, having repeatedly demonstrated the ability to identify problems in care, including ones missed by clinicians.6–11 Parents, like James Titcombe, whose son died 9 days after birth from a delayed sepsis diagnosis, are often the first to detect important clues in their child’s course.12–14 Patients like Serena Williams, who correctly suspected a postpartum pulmonary embolism but was initially unheeded by her care team, may be the first to know something is wrong.15 In this issue of BMJ Quality & Safety, Fisher and colleagues16 studied patients’ speaking up to enable organisational learning. Speaking up about confusing medications or care instructions is not the same as recognising and communicating about patient deterioration, calling out a perceived medical error or speaking up about disrespectful treatment—each distinct problems, with different barriers and motivators.21 The proportion of patients (70%) in Fisher and colleagues’16 study who always felt comfortable speaking up was unexpectedly high, standing in contrast to other reports.14 21 22 This may reflect the broad potential interpretation of ‘problems in care’. Rates of deep vein thrombosis, central line associated blood stream infection or falls, for example, may not give us the full picture.26 In a UK study asking patients to report safety concerns, a stunning 86% of patients did their part.26 However, few clinicians showed up to review patient reports and implement safety improvements, and unsurprisingly the study found no difference in safety outcomes.

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. Data were collected using tape recordings, field notes and student assignments. These were analyzed using open and selective coding, memoing, categorizing themes. Results Patients' education level (from high school to PhD), cultural background (immigrant experience, seniors), employment (employed full or part time, receiving disability benefits or retired), age (late 30 s—75) and gender (17 women and four men) were diverse. Main categories (emancipating patient experience; qualifying for research; leading sitting down; working data together; seeding change) are organized by the dialectic of co-creation as the roles of patient and researcher merge. A theoretical model is proposed. Discussion The theoretical model provides a glimpse into the process of merging two distinct roles of patient and researcher and in the process unleashes a force for change. Conclusions The emergence of a dialectic from polar opposite roles is difficult to locate in health or other institutions where power differentials exist but there are indications that this new role might become a template for other merged roles in patient-led medical teams.

Objectives Only rudimentary tools exist to support health system organizations to evaluate their public and patient engagement (PPE) activities. This study responds to this gap by developing a generic evaluation tool for use in a wide range of organizations. Methods The evaluation tool was developed through an iterative, collaborative process informed by a review of published and grey literature and with the input of Canadian PPE researchers and practitioners. Over a 3‐year period, structured e‐mail, telephone and face‐to‐face exchanges, including a modified Delphi process, were used to produce an evaluation tool that includes core principles of high‐quality engagement, expected outcomes for each principle and three unique evaluation questionnaires that were tested and revised with input from 65 end users. Results The tool is structured around four core principles of ‘quality engagement’: (i) integrity of design and process; (ii) influence and impact; (iii) participatory culture; and (iv) collaboration and common purpose. Three unique questionnaires were developed to assess each of these four evaluation domains from the following perspectives: (i) those who participate in PPE activities; (ii) those who plan, execute or sponsor PPE activities within organizations; and (iii) those who provide the leadership and capacity for PPE within their organizations. Conclusions This is the first known collaboration of researchers and practitioners in the co‐design of a comprehensive PPE evaluation tool aimed at three distinct respondent groups and for use in a wide range of health system organization settings.

Background Patient engagement in research (also commonly referred to as patient or patient and public involvement in research) strives to transform health research wherein patients (including caregivers and the public) are regularly and actively engaged as multidisciplinary research team members (i.e. patient partners) working jointly towards improved health outcomes and an enhanced healthcare system. To support its mindful evolution into a staple of health research, this participatory study aimed to identify future directions for Canadian patient engagement in research and discusses its findings in the context of the international literature. Methods The study met its aim through a multi-meeting pan-Canadian virtual workshop. Participants ( n  = 30) included Strategy for Patient-Oriented Research-funded academic researchers and patient partners identified through a publicly available database, personal and professional networks and social media. All spoke English, could access the workshop virtually, and provided written informed consent. The workshop was composed of four, 1.5–3-h virtual meetings wherein participants discussed the current and preferred future states of Canadian patient engagement in research. Workshop discussions (i.e. data) were video and audio recorded. Themes were generated through an iterative process of inductive thematic analysis that occurred concurrently with the multi-week workshop. Results Our participatory and iterative process identified 10 targetable areas of focus for the future of Canadian patient engagement in research. Five were categorized as system-level (systemic integration; academic culture; engagement networks; funding models; compensation models), one as researcher-level (engagement processes), and four crossed both levels (awareness; diversity and recruitment; training, tools and education; evaluation and impact). System level targetable areas called for reshaping the patient engagement ecosystem to create a legitimized and supportive space for patient engagement to be a staple component of a learning health system. Researcher level targetable areas called for academic researchers and patient partners to collaboratively generate evidence and apply knowledge to inform values and behaviours necessary to foster and sustain supportive health research spaces that are accessible to all. Conclusions Future directions for Canadian patient engagement in research span 10 interconnected targetable areas that require strong leadership and joint action between patient partners, academic researchers, and health and research institutions if patient engagement is to become a ubiquitous component of a learning health system.

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.