Patient Engagement In Health Research Research Articles

Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health

BackgroundIn 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss our experiences collaborating with the group over a multi-year period.MethodsWe conducted year-end surveys and interviews of group members to understand parents’ perceptions of their experiences, group management, researcher interaction, and other outcomes of advisory group participation from 2018 to 2021. We applied a mixed methods approach, collecting and analyzing both quantitative (survey) and qualitative (survey/interview) data. Survey data were analyzed by term using descriptive statistics (i.e., frequencies, percentages). Open-ended survey responses were analyzed by conventional content analysis. Interview data were analysed thematically.ResultsYear-end survey response rates and interview participation varied over the years. Responses to evaluation questions were generally positive and most improved over time. Results prompted changes to improve P-PAG operations, such as changes to location of meetings, communications about the group’s purpose, offering sufficient context for discussion items, and providing feedback about how members’ input was used. Themes identified from the qualitative data related to the importance of certain aspects of group functioning, positive views of the group’s current management, and potential areas for improvement. Parents regularly expressed a desire for more diversity in the group’s membership and an interest in hearing more about how the research program’s activities fit into the broader healthcare system and their impacts on health outcomes.ConclusionsOur experience in establishing, managing, and evaluating a parent advisory group over many years has resulted in valuable insights regarding patient engagement in health research and sustaining an advisory group over time. We have learned that an intentional and iterative approach with regular evaluations and responsive changes has been essential for fostering meaningful engagement. Significant resources are required to maintain the group; in turn, the group has made substantial and diverse contributions to the research program and its outputs.

Storytelling of Indigenous patient and family advocates engaged in patient-oriented research initiatives in the field of inflammatory bowel disease.

The history of colonization and its ongoing impact poses significant health disparities among Indigenous communities. We aimed to centre the voices and stories of Indigenous patients and family advocates (IPFAs-Indigenous patients living with inflammatory bowel disease [IBD] and family members of Indigenous individuals with IBD) engaged in patient-oriented research projects and who are part of the IBD among Indigenous Peoples Research Team (IBD-IPRT). IPFAs and Indigenous and non-Indigenous researchers of the IBD-IPRT followed a storytelling research methodology to let IPFAs share their stories as research team members. Four IPFAs documented their experiences as IBD patients, advocates, and research partners. The stories were analyzed for themes. The identified themes were collaboratively verified with the IPFAs. The full stories shared by the IPFAs were transcribed and presented in this paper. Following a background analysis of themes in the 4 narratives, we were also able to identify 4 key themes that could be relevant to improving patient-oriented research initiatives: (1) health promotion, (2) leadership and voice, (3) community engagement, and (4) disease awareness and access to care. Trust building, strong relationships, and effective partnerships are core components for conducting patient-oriented research with Indigenous community members. Indigenous patient engagement in health research is crucial to ensure that lived experiences, knowledge, and cultural values are adequately adopted to improve research outcomes. Centering IPFAs in IBD research can promote cultural awareness and actionable recommendations to improve health outcomes for individuals with IBD and their families and caregivers.

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools.

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. 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. 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. 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.

Patient Engagement in Health Research: Perspectives from Patient Participants.

Over the past decade, patient engagement (PE) has emerged as an important way to help improve the relevance, quality, and impact of health research. However, there is limited consensus on how best to meaningfully engage patients in the research process. The goal of this article is to share our experiences and insights as members of a Patient Advisory Committee (PAC) on a large, multidisciplinary cancer research study that has spanned six years. We hope by sharing our reflections of the PAC experiences, we can highlight successes, challenges, and lessons learned to help guide PE in future health research. To the best of our knowledge, few publications describing PE experiences in health research teams have been written by patients, survivors, or family caregivers themselves. A qualitative approach was used to gather reflections from members of the Patient Advisory Committee regarding their experiences in participating in a research study over six years. Each member completed an online survey and engaged in a group discussion based on the emergent themes from the survey responses. Our reflections about experiences as a PAC on a large, pan-Canadian research study include three overarching topics (1) what worked well; (2) areas for improvement; and (3) reflections on our overall contribution and impact. Overall, we found the experience positive and experienced personal satisfaction but there were areas where future improvements could be made. These areas include earlier engagement and training in the research process, more frequent communication between the patient committee and the research team, and on-going monitoring regarding the nature of the patient engagement. Engaging individuals who have experienced the types of events which are the focus of a research study can contribute to the overall relevance of the project. However, intentional efforts are necessary to ensure satisfactory involvement.

A Systematic Review of Patient Engagement Experiences in Brain Disorders.

Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce. To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation. Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria. In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices. Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of "expert patients" in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.

Patient engagement works: Patient and researcher experiences of patient partnership in primary healthcare research.

Context: Health researchers are increasingly engaging patients and their families as partners in the research process, from inception to knowledge translation. The trend toward 'patient-oriented' research is encouraged by a growing view that studies which integrate the patient perspective will make better use of resources to produce more relevant evidence that can be more easily translated to clinical settings. While there is an emerging literature on best practices, challenges, and learnings related to patient engagement (PE), few studies consider the experiences of patient partners (PP) and researchers in the same project. This presentation will present PP and researcher experiences of PE, highlighting important similarities and differences and proposing recommendations. Objectives: To characterize PE experience from the perspective of researchers and PP working together on the same research program, PriCARE; to identify successes and challenges; to ascertain contributions of PE in health research. Study Design: Qualitative. Setting or Dataset: This study was conducted within the larger 5-province PriCARE study examining a nurse-led case management intervention for primary care patients with complex needs. Population studied: 22 members of the study team (7 PP, 8 coordinators, 2 co-investigators, 5 principal investigators). Methods: Data collection: In-depth interviews using guides co-created by researchers and PP covering topics such as PE-related training and knowledge, and reflections on PE processes and impact. Research assistants external to the PriCARE study conducted interviews, transcribed researcher interviews, and generated a summary of PP interviews. Analysis: Data were analyzed thematically using a coding framework that was co-developed with PP. Outcome Measures: Researcher and patient experiences of PE, PP contributions to health research. Results: All team members need PE training at the beginning of and throughout the research process. Evolving trust and flexibility helped team members to navigate different experiences and priorities. PP make integral contributions to study and instrument design, data analysis, and knowledge translation. Clear expectations about the degree and nature of PE and team members' roles are critical. Conclusions: Meaningful PE requires patient-researcher partnership and clear expectation setting at the outset and throughout the research process, and ongoing flexibility to adapt.

COVID-19 and patient engagement in health research: What have we learned?

KEY POINTS There may never be a better time to take stock of recent developments in patient engagement than during the COVID-19 global pandemic. Science has been front-of-mind in the public consciousness, and scientific conduct has been open to scrutiny in an unprecedented way. Barriers to digital

Changing Health-Related Behaviors 1: Patient-Oriented Research and Patient Engagement in Health Research.

Engaging with patients and families is largely routine at the healthcare service or provision level. The concept of patient engagement in health research has a more recent history but is now often endorsed by leading journals and funders. Often described as research being done with patients, rather than "to" or "about" them, patient-oriented research is distinguished by patients serving as research partners rather than passive study subjects. It is generally accepted that patient engagement in health research is worthwhile and can contribute to better quality research. However, questions remain about how to do it, what values underlie it, and how patients can be engaged as partners in health research. In this chapter, we attempt to answer these questions and provide tangible examples of patient-oriented research in our province of Newfoundland and Labrador (NL), Canada. While there is no single approach to patient engagement in health research, we hope the examples provided herein help demonstrate how it might be done and assist research teams to better integrate and utilize patients' valuable input.

Restructuring Clinical Trials in Type 1 Diabetes and Exercise in the Context of Adult Patient-Oriented Research: An Intervention Codevelopment Protocol

Patient engagement in health research is a methodological approach whereby individuals living with a health condition are actively engaged throughout the research process. Engaging patient partners in research enhances participant recruitment, and reduces attrition rates once participants are enrolled (1,2), thereby reducing research “waste” (3). Qualitatively, patient engagement in clinical research cultivates trust between end-users and the scientific community, incorporating a broader diversity of perspectives and facilitating access to research findings (4,5).

Engaging indigenous patient partners in patient-oriented research: lessons from a one-year initiative

BackgroundPatient-oriented research (POR) is a specific application of participatory research that promotes active patient engagement in health research. There is a growing concern that people involved in POR do not reflect the diversity of the population such research aims to serve, but are rather those more ‘easily’ engaged with institutions, organizations and society. Indigenous peoples are among such groups generally underrepresented in POR. The “Indigenous patient partners platform project” was a small-scale initiative aimed to address the issue of the underrepresentation of Indigenous people in patient-oriented research by recruiting, orienting and supporting Indigenous patient partners in Québec (Canada). This article reports on the findings of an evaluation conducted at the end of the project to garner lessons and identify strategies for engaging Indigenous patient partners in patient-oriented research.MethodsThe evaluation of this initiative used a case study design hinging on documentary analysis and committee member interviews. Project documents (n = 29) included agendas and meeting minutes, support documents from the orientation workshop and workshop evaluations, and tools the committee developed as part of the project. Interview participants (n = 6) were patients and organizational partners. Thematic analysis was performed by two members of the research team. Patient partners actively contributed to validating the interpretation of result and knowledge translation.ResultsResults point to four key components of Indigenous patient partner engagement in POR: initiation of partnership, interest development, capacity building and involvement in research. Specific lessons emphasize the importance of community connections in recruiting, sustaining and motivating patient partners, the need to be flexible in the engagement process, and the importance of consistently valuing patient partner contributions and involvement.ConclusionsThere is a need to engage Indigenous patient partners in POR to ensure that healthcare practices, policies and research take their particular needs, stories and culture into account. While results of this evaluation are generally consistent with the existing literature on patient engagement, they offer additional insight into how to effectively engage Indigenous patient partners in research, which might also be relevant to the involvement of other marginalized populations who have been historically and systemically disempowered.

Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach

BackgroundCritical stakeholder-identified gaps in current health research engagement strategies include the exclusion of voices traditionally less heard and a lack of consideration for the role of trauma in lived experience. Previous work has advocated for a trauma-informed, intersectional, and critical reflexive approach to patient and public involvement in health research. The Valuing All Voices Framework embodies these theoretical concepts through four key components: trust, self-awareness, empathy, and relationship building. The goal of this framework is to provide the context for research teams to conduct patient engagement through the use of a social justice and health equity lens, to improve safety and inclusivity in health research. The aim of this study was to revise the proposed Valuing All Voices Framework with members of groups whose voices are traditionally less heard in health research.MethodsA qualitative descriptive approach was used to conduct a thematic analysis of participant input on the proposed framework. Methods were co-developed with a patient co-researcher and community organizations.ResultsGroup and individual interviews were held with 18 participants identifying as Inuit; refugee, immigrant, and/or newcomer; and/or as a person with lived experience of a mental health condition. Participants supported the proposed framework and underlying theory. Participant definitions of framework components included characterizations, behaviours, feelings, motivations, and ways to put components into action during engagement. Emphasis was placed on the need for a holistic approach to engagement; focusing on open and honest communication; building trusting relationships that extend beyond the research process; and capacity development for both researchers and patient partners. Participants suggested changes that incorporated some of their definitions; simplified and contextualized proposed component definitions; added a component of “education and communication”; and added a ‘how to’ section for each component. The framework was revised according to participant suggestions and validated through member checking.ConclusionsThe revised Valuing All Voices Framework provides guidance for teams looking to employ trauma-informed approaches, intersectional analysis, and critical reflexive practice in the co-development of meaningful, inclusive, and safe engagement strategies.Plain English SummaryPatient engagement in health research continues to exclude many people who face challenges in accessing healthcare, including (but not limited to) First Nations, Inuit, and Metis people; immigrants, refugees, and newcomers; and people with lived experience of a mental health condition. We proposed a new guide to help researchers engage with patients and members of the public in research decision-making in a meaningful, inclusive, and safe way. We called this the Valuing All Voices Framework, and met with people who identify as members of some of these groups to help define the key parts of the framework (trust; self-awareness; empathy; and relationship building), to tell us what they liked and disliked about the proposed framework, and what needed to be changed. Input from participants was used to change the framework, including clarifying definitions of the key parts, adding another key part called “education and communication”, and providing action items so teams can put these key parts into practice.

Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research

BackgroundEfforts to engage patients as partners in health research have grown and thereby the need for feedback and evaluation. In this pilot evaluation study, we aimed to 1) evaluate patient engagement in health research projects in Newfoundland and Labrador, Canada, and 2) learn more about how to best monitor and evaluate patient engagement. This paper presents the results of our participatory evaluation study and the lessons learned. The evaluation of the projects was driven by questions patients wanted answered.MethodsWe conducted a formative evaluation of patient engagement in health research projects. Projects spanned a variety of topics, target groups, research designs and methods of patient engagement. Participants included principal investigators (n = 6) and their patient partners (n = 14). Furthermore, graduate students (n = 13) working on their own research projects participated. Participants completed an online survey with closed and open-ended questions about their patient engagement efforts, experiences and preliminary outcomes. Patients were involved as co-investigators in the entire evaluation study. We used qualitative methods to evaluate our participatory process.ResultsThe evaluation study results show that most patients and researchers felt prepared and worked together in various phases of the research process. Both groups felt that the insights and comments of patients influenced research decisions. They believed that patient engagement improved the quality and uptake of research. Students felt less prepared and were less satisfied with their patient engagement experience compared to researchers and their patient partners. Involvement of patient co-investigators in this evaluation resulted in learnings, transparency, validation of findings and increased applicability. Challenges were to select evaluation questions relevant to all stakeholders and to adapt evaluation tools to local needs.ConclusionsOur findings show that researchers, patient partners and students value patient engagement in health research. Capacity building at the supervisor level in academic institutions is needed to better support students. Sufficient time is also needed to permit observable outcomes. Participatory evaluation may increase the relevance and usefulness of information, but it also raises issues such as who defines and designs the content of evaluation tools. A co-creation process is required to develop appropriate monitoring and evaluation strategies.

The Role of Patient Advisory Councils in Health Research: Lessons From Two Provincial Councils in Canada.

This article describes two patient advisory councils (PACs) in Canada in order to contribute to the limited evidence base on how they might facilitate patient engagement in health research. Specifically, members of PACs from Newfoundland and Labrador and Alberta describe their councils’ governance structure, primary functions, creation and composition, and recount specific research-related activities with which they have been involved. Key challenges of these councils and facilitators of their use are also presented. Finally, members from both councils recount lessons learned and offer suggestions for others interested in advisory councils as a mechanism for patient engagement in any health research project. Members believe patient engagement can result in better quality research and encourage decision makers and researchers to utilize patients’ valuable input to inform health system changes and drive priorities at a policy level.

What Is Missing from "Patient-Oriented Research?" A View from Public Health Systems and Services.

Patient-oriented research (POR) aims to increase patient engagement in health research to improve health research and health services. In Canada, the Strategies for Patient-Oriented Research (SPOR) framework provides guidance for conducting POR. We critically review the SPOR framework through the lens of public health systems and services research. The SPOR framework is primarily focused on engaging individual patients in health research without attention to broader structural forces that shape health and participation in healthcare systems. Shifting from patient to public involvement and from patient to community engagement and being explicit about the range of health research that SPOR encompasses would enhance the framework and strengthen the potential of SPOR to improve health systems through health protection, promotion and prevention of disease and injury.

Group Concept Mapping As A Strategy for Defining Patient-Centered Outcomes In Proms and Pro-Pms

Although patient engagement in health research is commonly recognized as a priority, there is a lack of guidance regarding appropriate and feasible methods for defining patient-centered outcomes. This is critical when developing both patient-reported outcome measures (PROMs) and PRO-based performance measures (PRO-PMs). One area that has been particularly ignored is engaging patients in the creation of conceptual frameworks that define outcomes that matter to patients. Clinicians and researchers generally create these frameworks, relying on the incorporation of the patient voice through one-on-one interviews, surveys, and focus groups. However, each of these strategies are fraught with limitations, including patient response bias and potential limitations of generalizability. In addition, they do not leverage the potential of social research networks and group-based technological solutions to develop patient-centered conceptual frameworks. This presentation addresses the following objectives in PROM and PRO-PM development: (1) review of group concept mapping (GCM; Concept Systems®) as a viable method for engaging patients, (2) provision of examples of GCM applications in defining outcomes, and (3) discussion of strengths and limitations of this approach. GCM combines qualitative (statement generation and sorting) and quantitative (multidimensional scaling and cluster analysis) methods to generate visual maps depicting a conceptual model. This presentation will show examples of studies that have utilized GCM for the development of PROMs and a recent Robert Wood Johnson Foundation PRO-PM study to define patient perceptions of “good” healthcare. Strengths of GCM include evidence of validity and reliability, ability to incorporate multiple stakeholder views into a single conceptual framework, and the potential for application to measurement and evaluation. Potential limitations include problems with technical literacy, attrition, and managing response burden. Methods to address these limitations will be discussed. Overall, GCM represents a valuable participatory concept development strategy with the potential to enhance traditional researcher-driven methods in PROM and PRO-PM development.

Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis

BackgroundThe concept of patient engagement in health research has received growing international recognition over recent years. Yet despite some critical advancements, we argue that the concept remains problematic as it negates the very real complexities and context of people’s lives. Though patient engagement conceptually begins to disrupt the identity of “researcher,” and complicate our assumptions and understandings around expertise and knowledge, it continues to essentialize the identity of “patient” as a homogenous group, denying the reality that individuals’ economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways.DiscussionPatient engagement approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia) exclude the involvement of individuals who often carry the greatest burden of illness — the very voices traditionally less heard in health research. We contend that in order to be a more inclusive and meaningful approach that does not simply reiterate existing health inequities, it is important to reconceptualize patient engagement through a health equity and social justice lens by incorporating a trauma-informed intersectional analysis.SummaryThis article provides key concepts to the incorporation of a trauma-informed intersectional analysis and important questions to consider when developing a patient engagement strategy in health research training, practice and evaluation. In redefining the identity of both “patient” and “researcher,” spaces and opportunities to resist and renegotiate power within the intersubjective relations can be recognized and addressed, in turn helping to build trust, transparency and resiliency — integral to the advancement of the science of patient engagement in health research.

Active Patient Engagement: Long Overdue in Rehabilitation Research.

Patients can make a valuable contribution to developing and improving clinical care. Current foundations and strategies, including the Canadian Foundation for Healthcare Improvement and Canada's Strategy for Patient-Oriented Research, focus on ways to engage patients in the development of health services, and a body of literature reports on engaging patients in decision making and policies to promote care delivered across acute-care settings.1 In comparison, patient engagement in research has received little attention.2 Patients' place in research has evolved from a passive role, in which they represent data points, to an active role that involves contributing to the research process. According to the Canadian Institutes of Health Research (CIHR), the term patient engagement refers to the meaningful collaboration of patients in the conduct of research, and patient engagement is now a requirement of any application for funding.3 The CIHR recommends integrating the patient perspective into every step of the research process, from conceptualizing a research idea and developing protocols through to translating the research findings into clinical practice.3 Lessons on involving patients in research can be learned from other countries. In the United Kingdom, the government-funded INVOLVE program supports active patient engagement in health research across the country,4 but how patients have contributed to the research process is usually described only briefly in published research papers, if at all, and therefore the full impact of their involvement is seldom fully understood. Studies must routinely provide detailed information about the method of engaging patients in research and the impact of such engagement on outcomes and continuing research inquiry.5 Very few published rehabilitation studies have included patients in the research process, except as participants.2 In the United States, the National Institute on Disability and Rehabilitation has recognized the importance of involving people with disabilities in rehabilitation research;6 several studies have explored the experience of living with a disability,7–9 and people with disabilities have been included in program development10,11—yet patient involvement in testing rehabilitation interventions is still rare,2 which may contribute to the current challenges of developing, translating, disseminating, and sustaining evidence-based rehabilitation interventions in clinical practice.

The Institute of Circulatory and Respiratory Health Strategic Plan for 2013-2016 Executive Summary.

The Institute of Circulatory and Respiratory Health Strategic Plan for 2013-2016 Executive Summary.