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

2021 ◽  
pp. 537-552
Author(s):  
Catherine Street ◽  
Laurie K. Twells ◽  
Toni Leamon ◽  
Lynn Taylor ◽  
Holly Etchegary
Keyword(s):  
Patient Engagement ◽  
Health Research ◽  
Health Related Behaviors ◽  
Health Related ◽  
Oriented Research

scholarly journals Role of the Built and Online Social Environments on Expression of Dining on Instagram

2020 ◽  
Vol 17 (3) ◽  
pp. 735 ◽  
Author(s):  
Vishwali Mhasawade ◽  
Anas Elghafari ◽  
Dustin T. Duncan ◽  
Rumi Chunara
Keyword(s):  
Public Health ◽  
Built Environment ◽  
Online Social Networks ◽  
Health Research ◽  
Public Health Research ◽  
Time Of Day ◽  
Social Environments ◽  
Health Related Behaviors ◽  
Health Related

Online social communities are becoming windows for learning more about the health of populations, through information about our health-related behaviors and outcomes from daily life. At the same time, just as public health data and theory has shown that aspects of the built environment can affect our health-related behaviors and outcomes, it is also possible that online social environments (e.g., posts and other attributes of our online social networks) can also shape facets of our life. Given the important role of the online environment in public health research and implications, factors which contribute to the generation of such data must be well understood. Here we study the role of the built and online social environments in the expression of dining on Instagram in Abu Dhabi; a ubiquitous social media platform, city with a vibrant dining culture, and a topic (food posts) which has been studied in relation to public health outcomes. Our study uses available data on user Instagram profiles and their Instagram networks, as well as the local food environment measured through the dining types (e.g., casual dining restaurants, food court restaurants, lounges etc.) by neighborhood. We find evidence that factors of the online social environment (profiles that post about dining versus profiles that do not post about dining) have different influences on the relationship between a user’s built environment and the social dining expression, with effects also varying by dining types in the environment and time of day. We examine the mechanism of the relationships via moderation and mediation analyses. Overall, this study provides evidence that the interplay of online and built environments depend on attributes of said environments and can also vary by time of day. We discuss implications of this synergy for precisely-targeting public health interventions, as well as on using online data for public health research.

scholarly journals Development of the patient-oriented research curriculum in child health (PORCCH)

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Colin Macarthur ◽  
Catharine M. Walsh ◽  
Francine Buchanan ◽  
Aliza Karoly ◽  
Linda Pires ◽  
...  
Keyword(s):  
Child Health ◽  
Patient Engagement ◽  
Health Research ◽  
Healthcare Professionals ◽  
Research Process ◽  
Decision Makers ◽  
Core Element ◽  
Research Curriculum ◽  
Child Health Research ◽  
Oriented Research

Abstract Background The Canadian Institutes for Health Research launched a national ‘Strategy for Patient-Oriented Research’ (SPOR) in 2011. Patient-oriented research is defined as a continuum of research that engages patients as partners, focuses on patient-identified priorities, and improves patient outcomes. Capacity development is a core element of SPOR. Barriers to patient-oriented research include unfamiliarity with the research process for patients and families and unfamiliarity with the methods of patient and family engagement for researchers. Methods The aim of the Patient-Oriented Research Curriculum in Child Health (PORCCH) is to build capacity in patient-oriented research in child health among patients and families, researchers, healthcare professionals, decision-makers, and trainees through a curriculum delivered via a series of interactive online modules (e-learning). A multi-disciplinary, multi-stakeholder steering committee, which included patients and families, guided the development of the curriculum and provided feedback on individual modules. The content, design, and development of each module were co-led by a parent and researcher in an equal partnership. Results PORCCH consists of a series of five modules. All modules are interactive and include video vignettes and knowledge comprehension questions. Access to the modules is free and each module takes approximately 30 min to complete. The five modules are: Research 101 (an Introduction to Patient-Oriented Research, parts 1 and 2), Patient Engagement 101 (an Introduction to Patient Engagement in Child Health Research, parts 1 and 2), and Research Ethics 101. Conclusions PORCCH was developed specifically to overcome recognized barriers to the engagement of patients and families in child health research. The aim of the curriculum is to build capacity in patient-oriented research in child health. The goal is for PORCCH to be a useful resource for all stakeholders involved in patient-oriented research: patients and families, researchers, healthcare professionals, decision-makers, and trainees.

scholarly journals Program Report: KidneyPRO, a Web-based Training Module for Patient Engagement in Kidney Research

2020 ◽  
Vol 7 ◽  
pp. 205435812097925
Author(s):  
Leah Getchell ◽  
Eva Bernstein ◽  
Elisabeth Fowler ◽  
Linnea Franson ◽  
Marian Reich ◽  
...  
Keyword(s):  
User Interface ◽  
Capacity Building ◽  
Patient Engagement ◽  
Health Research ◽  
Early Years ◽  
Sources Of Information ◽  
Training Module ◽  
Implementation Framework ◽  
Web Based ◽  
Oriented Research

Purpose of report: Over the recent years, there has been increasing support and traction for patient-oriented research (POR). Such an approach ensures that health research is focused on what matters most: improving outcomes for patients. Yet the realm of health research remains enigmatic for many patients in Canada who are not familiar with research terms and practices, highlighting the need for focused capacity-building efforts, including the development of novel educational tools to support patients to meaningfully engage in the research enterprise. The need for disease-specific training in POR was identified by the network dedicated to advancing patient-oriented kidney research in Canada, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD), during the early years of the network’s inception. In this report, we describe the development of KidneyPRO, an online learning module that orients patients and families to kidney research in Canada, and outlines ways to get involved. In line with the Patient Engagement framework of the Strategy for Patient Oriented Research, KidneyPRO was co-developed with the network’s patient partners. Sources of information: The need for KidneyPRO was identified through a review of feedback from network participants of Canadian Institutes of Health Research’s (CIHR) Foundations in Patient-Oriented Research Module 2—Health Research in Canada and a network-wide survey of Can-SOLVE CKD that was conducted in June 2017 and assessed training needs of key stakeholders. This 2017 survey ranked the need for tools providing introductory knowledge on Canadian kidney research as third in the network’s top 5 capacity-building priorities. Methods: At Can-SOLVE CKD, a dedicated multi-stakeholder team was formed from the Training & Mentorship Committee (the network’s core infrastructure for POR capacity building) to determine the learning objectives, content, and user interface. The team consisted of 3 patient partners, Director of Research for the Kidney Foundation of Canada, a kidney clinician-scientist, the network’s Patient Partnerships & Training Lead, Can-SOLVE CKD’s Indigenous People’s Engagement and Research Council Coordinator, and a project coordinator. With permission, content from CIHR’s Foundations in Patient-Oriented Research, along with resources from the Kidney Foundation of Canada’s research arm and network project teams, was used to form the basis of the tool. The working group adapted a DoTTI (Design and develOpment, Testing early iterations, Testing for Effectiveness, Integration, and implementation) framework and iteratively identified, created, and refined the content and user interface in consultation with the Training and Mentorship Committee and the Can-SOLVE CKD Patient Governance Circle. Key findings: In this article, we describe the development, deployment, and evaluation of KidneyPRO, a web-based training module that helps patients understand general, patient-oriented, and kidney-specific research within Canada. KidneyPRO aims to support patient engagement in studies as partners and/or participants and empower them to take part in the research process in an active and meaningful way. It was co-designed and vetted by patients, which helps to ensure clear, useful content and a user-friendly interface. In addition, the module includes links to kidney research opportunities within the Can-SOLVE CKD Network and beyond. A literature review established that KidneyPRO fills an important gap in kidney-specific POR. Ongoing collection of website metrics and postcompletion surveys from users will be used to evaluate the effectiveness of the tool. Limitations: As an online tool, people who do not have adequate Internet access will not be able to use KidneyPRO. Currently, the tool is not compliant with all Web Content Accessibility Guidelines. Given how the landscape of patient partnership in research is constantly evolving, the content in KidneyPRO needs to be updated on a regular basis. Implications: Canadians with or at high risk of CKD now have access to an educational tool when seeking to engage as partners and/or participants in innovative kidney research.

scholarly journals Albertans for Health Research Network: Form, Fit, and Function

2020 ◽  
Vol 7 (6) ◽  
pp. 973-977
Author(s):  
Jananee Rasiah ◽  
Elizabeth Manafò ◽  
Kiara Krawec ◽  
Ingrid Nielssen ◽  
Israel Amirav ◽  
...  
Keyword(s):  
Patient Engagement ◽  
Health Research ◽  
Discussion Groups ◽  
Research Network ◽  
Collaborative Partnerships ◽  
Research Support ◽  
And Function ◽  
User Friendly ◽  
Network Form ◽  
Oriented Research

The patient engagement (PE) platform staff of Alberta Strategy for Patient Oriented Research Support for People and Patient Oriented Research Trials Unit developed a patient-powered PE network called Albertans for Health Research Network (AB4HR); an enhanced tool to better connect patient partners and researchers online. AB4HR was developed in response to an identified need—a user-friendly online forum for both patient partners and researchers to access, so that they can better work together, as partners, in health research. We codesigned AB4HR and identified ways to improve the form, fit, and function of an existing registry through discussion groups with patient partners and researchers. We found 3 main themes derived from the perspective shared by patient partners and researchers. Patient partners and researchers agreed that the existing registry provides a forum to connect with one another in an easy, low-barrier way. However, there were opportunities for improvement with AB4HR, including possibilities for greater interaction between patient partners and researchers to promote more collaborative partnerships.

Engaging patients as partners in health research: Lessons from BC, Canada

2018 ◽  
Vol 31 (2) ◽  
pp. 41-44 ◽  
Author(s):  
Bev J. Holmes ◽  
Stirling Bryan ◽  
Kendall Ho ◽  
Colleen McGavin
Keyword(s):  
British Columbia ◽  
Patient Engagement ◽  
Retrospective Review ◽  
Health Research ◽  
Research Unit ◽  
Research Projects ◽  
Body Of Knowledge ◽  
Lay People ◽  
Training And Support ◽  
Oriented Research

Canada is seeing increased interest in engaging patients in health research, recognizing the potential to improve its relevance and quality. The momentum is promising, but there may be a tendency to ignore the challenges inherent when lay people and professionals collaborate. We address some of these challenges as they relate to recruitment, training, and support for patients at the British Columbia (BC) Support for People and Patient-Oriented Research Unit, part of Canada’s Strategy for Patient-Oriented Research. A retrospective review of a telehealth project demonstrates that, as well as the practical elements of recruitment, training, and support, attention must be paid to issues of credibility, legitimacy, and power when engaging patients. We propose that all patient-oriented research projects would benefit from using a similar framework to guide patient engagement planning and implementation, helping to anticipate and mitigate challenges from the outset. Projects would ideally also include the study of patient engagement methods, to add to this important body of knowledge.

scholarly journals Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

2021 ◽  
Vol 11 ◽  
pp. 263355652199950
Author(s):  
Maureen Markle-Reid ◽  
Rebecca Ganann ◽  
Jenny Ploeg ◽  
Gail Heald-Taylor ◽  
Laurie Kennedy ◽  
...  
Keyword(s):  
Older Adults ◽  
Lived Experience ◽  
Research Program ◽  
Patient Engagement ◽  
Health Research ◽  
Research Process ◽  
Research Unit ◽  
Lessons Learned ◽  
Meaningful Engagement ◽  
Oriented Research

Background: Patient “engagement” in health research broadly refers to including people with lived experience in the research process. Although previous reviews have systematically summarized approaches to engaging older adults and their caregivers in health research, there is currently little guidance on how to meaningfully engage older adults with multimorbidity as research partners. Objectives: This paper describes the lessons learned from a patient-oriented research program, the Aging, Community and Health Research Unit (ACHRU), on how to engage older adults with multimorbidity as research partners. Over the past 7-years, over 40 older adults from across Canada have been involved in 17 ACHRU projects as patient research partners. Methods: We developed this list of lessons learned through iterative consensus building with ACHRU researchers and patient partners. We then met to collectively identify and summarize the reported successes, challenges and lessons learned from the experience of engaging older adults with multimorbidity as research partners. Results: ACHRU researchers reported engaging older adult partners across many phases of the research process. Five challenges and lessons learned were identified: 1) actively finding patient partners who reflect the diversity of older adults with multimorbidity, 2) developing strong working relationships with patient partners, 3) providing education and support for both patient partners and researchers, 4) using flexible approaches for engaging patients, and 5) securing adequate resources to enable meaningful engagement. Conclusion: The lessons learned through this work may provide guidance to researchers on how to facilitate meaningful engagement of this vulnerable and understudied subgroup in the patient engagement literature.

1998 Department of Defense Survey of Health Related Behaviors Among Military Personnel

1999 ◽  
Author(s):  
Robert M. Bray ◽  
◽  
Rebecca P. Sanchez ◽  
Miriam L. Ornstein ◽  
Danielle Lentine ◽  
...  
Keyword(s):  
Military Personnel ◽  
Department Of Defense ◽  
Health Related Behaviors ◽  
Health Related
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