scholarly journals An empirically based conceptual framework for fostering meaningful patient engagement in research

2017 ◽  
Vol 21 (1) ◽  
pp. 396-406 ◽  
Author(s):  
Clayon B. Hamilton ◽  
Alison M. Hoens ◽  
Catherine L. Backman ◽  
Annette M. McKinnon ◽  
Shanon McQuitty ◽  
...  
Keyword(s):  
Conceptual Framework ◽  
Patient Engagement ◽  
Patient Engagement In Research

scholarly journals Parent engagement in co-design of clinical trials: the PARENT trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Leigh M. Vanderloo ◽  
Shelley M. Vanderhout ◽  
Erika Tavares ◽  
Jonathon Maguire ◽  
Sharon Straus ◽  
...  
Keyword(s):  
Focus Group ◽  
Patient Engagement ◽  
Parent Engagement ◽  
Nominal Group Technique ◽  
Nominal Group ◽  
Future Research ◽  
Potential Barriers ◽  
Patient Engagement In Research ◽  
Diverse Individual ◽  
Parent Trial

AbstractEvidence generated from partnering with parents to design and conduct research together may be used to refine, adjust, and modify future research approaches. This study aimed to describe the initial approaches to parent engagement in the design of the PARENT trial as well as understand parent perspectives on the acceptability and relevance of the PARENT trial and potential barriers and facilitators to participation.Parents participating in the TARGet Kids! cohort were invited to participate in a focus group, called the PARENT panel, to co-design the PARENT trial. This focus group was conducted to capture diverse individual and collective parents’ experiences. Overall methodological approaches for the PARENT panel were informed by the CIHR Strategy for Patient Oriented Research (SPOR) guiding principles (mutual respect, co-building, inclusiveness, and support) for patient engagement in research, and facilitated through the Knowledge Translation Program in the Li Ka Shing Knowledge Institute at Unity Health Toronto. Using a Nominal Group Technique, the PARENT panel provided feedback on the feasibility, relevance, and acceptability of the proposed intervention. Findings from this work will be used to further refine, adjust, and modify the next iteration of the PARENT trial, which will also serve as an opportunity to discuss the efforts made by researchers to incorporate parent suggestions and what additional steps are required for improved patient engagement.

scholarly journals Approaching patient engagement in research: what do patients with cardiovascular disease think?

2015 ◽  
pp. 1061 ◽  
Author(s):  
Lila J. Finney Rutten ◽  
Megan Morris ◽  
Lisa Schrader ◽  
Sheila Manemann ◽  
Jyotishman Pathak ◽  
...  
Keyword(s):  
Cardiovascular Disease ◽  
Patient Engagement ◽  
Patient Engagement In Research

scholarly journals Sharing Experiences and Expertise: The Health Care Systems Research Network Workshop on Patient Engagement in Research

2016 ◽  
Vol 3 (3) ◽  
pp. 159-166 ◽  
Author(s):  
Sarah Madrid ◽  
Leah Tuzzio ◽  
Cheryl D Stults ◽  
Leslie A Wright ◽  
Gina Napolitano ◽  
...  
Keyword(s):  
Health Care ◽  
Patient Engagement ◽  
Health Care Systems ◽  
Research Network ◽  
Systems Research ◽  
Care Systems ◽  
Patient Engagement In Research

scholarly journals Using qualitative research perspectives to inform patient engagement in research

2018 ◽  
Vol 4 (1) ◽  
Author(s):  
Michelle Phoenix ◽  
Tram Nguyen ◽  
Stephen J. Gentles ◽  
Sandra VanderKaay ◽  
Andrea Cross ◽  
...  
Keyword(s):  
Qualitative Research ◽  
Patient Engagement ◽  
Research Perspectives ◽  
Patient Engagement In Research

scholarly journals An Evaluation of Parents’ Experiences of Patient Engagement in Research to Develop a Digital Knowledge Translation Tool: Protocol for a Multi-Method Study (Preprint)

2020 ◽  
Author(s):  
Alison P Thompson ◽  
Shannon E MacDonald ◽  
Eytan Wine ◽  
Shannon D Scott
Keyword(s):  
Knowledge Translation ◽  
Patient Engagement ◽  
Information Needs ◽  
Research Collaboration ◽  
Research Evaluation ◽  
Functional Constipation ◽  
Patient Questionnaire ◽  
Digital Knowledge ◽  
Patient Engagement In Research ◽  
Parents Experiences

BACKGROUND The last decade has seen increasing calls for patient and public involvement in health-related research due to an ideological shift toward more equitable methods of knowledge development and an effort to increase the usability and relevance of knowledge by improving outcomes in clinical practice. Patient engagement includes simply informing patients to offering complete decision-making autonomy to individuals, groups, communities, caregivers, friends, and families who have personal experience and knowledge of a health issue. Despite the use of patient engagement methods in research, evaluation has lagged, resulting in a knowledge gap that makes it difficult to foster capacity and sustainability for patients and researchers alike since little is known about how effective patient collaborations in research are built, maintained, or improved. This study centers on pediatric functional constipation, a common condition that affects children and families. Since parents play a pivotal role in treatment, they are an optimal group to engage in improving the resources and support available to them. OBJECTIVE This study aims to use patient-engagement methods to establish a research collaboration with parents to cocreate a digital knowledge translation tool for parents caring for a child with functional constipation and formally evaluate the patient engagement processes within this project to build the science of patient engagement in research. METHODS Members of the parent collaborator group will be recruited from previous participants who expressed interest in the development of a digital knowledge translation tool. The group will collaborate with the research team to create a tool to address patients’ support and information needs when caring for a child with functional constipation. The parent collaborator group will then be evaluated in a multimethod study design. Data will be digitally and anonymously collected from all members of the parent collaborator group, using the validated Public and Patient Engagement Evaluation Tool (PPEET) patient questionnaire. Descriptive statistics will be used to report group characteristics and question responses. Qualitative analysis will be used to understand open-ended question responses. Specifically, directed content analysis will be used to assess themes of the Patient Engagement in Research (PEIR) Framework with a combination of deductive and inductive analyses. Findings will be integrated into the discussion if there are sufficient commonalities and inter-relationships. The final manuscript will include reporting of each element as described by the Good Reporting of a Mixed Methods Study criteria. RESULTS Recruitment is planned for June 2020. Data collection for the evaluation of patient engagement processes will occur upon completion of the digital knowledge translation tool. The results of this study are expected to be published by the end of 2020. CONCLUSIONS This study will provide valuable information about parents’ experiences participating in child-health research and is a fundamental step in building the science of patient engagement in research. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/19108

scholarly journals An Evaluation of Parents’ Experiences of Patient Engagement in Research to Develop a Digital Knowledge Translation Tool: Protocol for a Multi-Method Study

10.2196/19108 ◽  
2020 ◽  
Vol 9 (8) ◽  
pp. e19108
Author(s):  
Alison P Thompson ◽  
Shannon E MacDonald ◽  
Eytan Wine ◽  
Shannon D Scott
Keyword(s):  
Knowledge Translation ◽  
Patient Engagement ◽  
Information Needs ◽  
Research Collaboration ◽  
Research Evaluation ◽  
Functional Constipation ◽  
Patient Questionnaire ◽  
Digital Knowledge ◽  
Patient Engagement In Research ◽  
Parents Experiences

Background The last decade has seen increasing calls for patient and public involvement in health-related research due to an ideological shift toward more equitable methods of knowledge development and an effort to increase the usability and relevance of knowledge by improving outcomes in clinical practice. Patient engagement includes simply informing patients to offering complete decision-making autonomy to individuals, groups, communities, caregivers, friends, and families who have personal experience and knowledge of a health issue. Despite the use of patient engagement methods in research, evaluation has lagged, resulting in a knowledge gap that makes it difficult to foster capacity and sustainability for patients and researchers alike since little is known about how effective patient collaborations in research are built, maintained, or improved. This study centers on pediatric functional constipation, a common condition that affects children and families. Since parents play a pivotal role in treatment, they are an optimal group to engage in improving the resources and support available to them. Objective This study aims to use patient-engagement methods to establish a research collaboration with parents to cocreate a digital knowledge translation tool for parents caring for a child with functional constipation and formally evaluate the patient engagement processes within this project to build the science of patient engagement in research. Methods Members of the parent collaborator group will be recruited from previous participants who expressed interest in the development of a digital knowledge translation tool. The group will collaborate with the research team to create a tool to address patients’ support and information needs when caring for a child with functional constipation. The parent collaborator group will then be evaluated in a multimethod study design. Data will be digitally and anonymously collected from all members of the parent collaborator group, using the validated Public and Patient Engagement Evaluation Tool (PPEET) patient questionnaire. Descriptive statistics will be used to report group characteristics and question responses. Qualitative analysis will be used to understand open-ended question responses. Specifically, directed content analysis will be used to assess themes of the Patient Engagement in Research (PEIR) Framework with a combination of deductive and inductive analyses. Findings will be integrated into the discussion if there are sufficient commonalities and inter-relationships. The final manuscript will include reporting of each element as described by the Good Reporting of a Mixed Methods Study criteria. Results Recruitment is planned for June 2020. Data collection for the evaluation of patient engagement processes will occur upon completion of the digital knowledge translation tool. The results of this study are expected to be published by the end of 2020. Conclusions This study will provide valuable information about parents’ experiences participating in child-health research and is a fundamental step in building the science of patient engagement in research. International Registered Report Identifier (IRRID) PRR1-10.2196/19108

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