scholarly journals Structure, Process and Outcomes in Patient Engagement

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 150-150
Author(s):  
June Eilers ◽  
Cheryl Jernigan ◽  
Kim Kimminau ◽  
Carol Geary
Keyword(s):  
Great Plains ◽  
Patient Engagement ◽  
Research Network ◽  
Patient Centered ◽  
Ongoing Research ◽  
University Departments ◽  
Research Engagement ◽  
Advisory Boards ◽  
Multiple Structures ◽  
Patient Engagement In Research

Abstract Although patient engagement in research is gaining acceptance by researchers and funding bodies, descriptions of implementation options and associated outcomes are limited. In this appreciative inquiry of the 12 institutions involved in the Great Plains Collaborative of the Patient-Centered Outcomes Research Network (PCORnet), we interviewed patient engagement officers and patient partners to enhance understanding of approaches to organizational structure, research engagement processes, and associated outcomes of the engaged research. Multiple structures have been identified including operational affiliations in both hospital and multiple university departments. Professional affiliations of patient engagement officers vary widely, including nurses, social workers, and public health professionals, among others. Patient engagement processes also vary, but with the majority using forms of advisory boards. All sites reported outcomes of their work including completed and/or ongoing research and co-authored publications.

scholarly journals Engaging Those Living With Moderate to Severe TBI and Their Caregivers in Research

2021 ◽  
Vol 8 ◽  
pp. 237437352199885
Author(s):  
Nathaniel V Mohatt ◽  
Carlee J Kreisel ◽  
Lisa A Brenner ◽  
Keyword(s):  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Patient Engagement ◽  
The United States ◽  
Research Process ◽  
Patient Centered ◽  
Research Engagement ◽  
Severe Tbi ◽  
Caregiver Needs ◽  
Patient Engagement In Research

Despite the fact that millions of individuals living in the United States are coping with disabilities associated with traumatic brain injury (TBI), limited work has explored strategies for patient engagement in research among those with such injuries. The Coalition for Recovery and Innovation in Traumatic Brain Injury Care Across the Lifespan (CRITICAL) brought together those living with TBI, caregivers, clinicians, researchers, and advocates with the goal of developing a new patient-centered research agenda. This platform was also used to explore strategies to engage those with moderate to severe TBI in the research process. The CRITICAL was formed of 6 survivors of moderate to severe TBI, 2 caregivers of survivors of moderate to severe TBI, and 8 TBI professionals. The CRITICAL identified 3 priority topic areas: Relationship Quality, Caregiver Needs, and Thriving. Furthermore, strategies associated with Communication, Preparation, and the Environment facilitated research engagement. Employing the strategies outlined in this article is expected to promote patient engagement in clinical research, which can improve patient-centered interventions and outcomes for individuals living with TBI.

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

Use of Comprehensive Participatory Planning and Evaluation in Rural Patient Engagement

2021 ◽  
pp. 019394592199491
Author(s):  
Carol Reynolds Geary ◽  
Jennie L. Hill ◽  
June Eilers ◽  
Melissa Leon ◽  
Jeff Ordway ◽  
...  
Keyword(s):  
Community Engagement ◽  
Patient Engagement ◽  
Participatory Planning ◽  
Rural Patient ◽  
Research Engagement ◽  
Patient Engagement In Research

Comprehensive participatory planning and evaluation (CPPE), a model used in community engagement research, has not been applied to patient engagement in research. We describe our methodology and interim results using CPPE in a project focused on improving research engagement of rural and distant patients and stakeholders. Specifically, we describe our development of a causal map and the subsequent use of the map to guide patient and stakeholder-driven evaluation.

scholarly journals Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

2015 ◽  
Vol 24 (5) ◽  
pp. 1033-1041 ◽  
Author(s):  
Lori Frank ◽  
Laura Forsythe ◽  
Lauren Ellis ◽  
Suzanne Schrandt ◽  
Sue Sheridan ◽  
...  
Keyword(s):  
Patient Engagement ◽  
Outcomes Research ◽  
Patient Centered ◽  
Patient Engagement In Research ◽  
Research Institute

scholarly journals Patient Engagement in Research Design and Implementation: Moving From Infancy to Adolescence

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 788-788
Author(s):  
Carol Geary ◽  
Martina Roes ◽  
Katherine Abbott
Keyword(s):  
Research Design ◽  
Patient Engagement ◽  
Stakeholder Engagement ◽  
The United States ◽  
Patient Centered ◽  
Program Outcomes ◽  
Rural Patient ◽  
Centered Care ◽  
Patient Engagement In Research ◽  
The Impact

Abstract Patient (also referred to as User or Older Adult) engaged research is a unique approach to research design, implementation, and dissemination. The practice of engaged research, in its broader sense, involves service recipients, caregivers, clinicians, and other stakeholders in prioritization of research questions, approach, and practice translation to ensure strong stewardship of funds, valid and reliable methods, and practical application. Patient engaged research also aligns with tenets of person-centered care in the inclusive nature and the expectation that the practice will improve the processes and the outcomes of research. Likewise, GSA’s focus on diversity of thought through interdisciplinary work strongly aligns with inclusion of patient and stakeholder voices in the performance of interdisciplinary research. Although patient and stakeholder engagement in research is a new approach for many, globally, funders increasingly require evidence of “meaningful” engagement in project proposals. In the United States, the Patient-Centered Outcomes Research Institute (PCORI) is well-known for funding engaged research and the National Institute on Aging (NIA) has demonstrated use of “collaborative” methods central to patient engagement within the IMPACT Collaboratory. Patient engagement literature, while growing, does not yet provide adequate guidance for replication of current or development of new approaches to patient engagement in research. Therefore, the purpose of this symposium is to frame patient engagement through a historic lens (Roes) and discuss the ethics of engagement (O’Sullivan). In addition, we will share program outcomes from three patient engagement programs: the Leading Age LTSS Center, Rural Patient & Stakeholder Engagement, and Sages in Every Setting. Patient/Person Engagement in Research Interest Group Sponsored Symposium.

scholarly journals Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute

2019 ◽  
Vol 38 (3) ◽  
pp. 359-367 ◽  
Author(s):  
Laura P. Forsythe ◽  
Kristin L. Carman ◽  
Victoria Szydlowski ◽  
Lauren Fayish ◽  
Laurie Davidson ◽  
...  
Keyword(s):  
Patient Engagement ◽  
Outcomes Research ◽  
Patient Centered ◽  
Patient Engagement In Research ◽  
Research Institute

scholarly journals Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

2021 ◽  
pp. 1-11
Author(s):  
Lisa Damron ◽  
Irene Litvan ◽  
Ece Bayram ◽  
Sarah Berk ◽  
Bernadette Siddiqi ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Native Language ◽  
Research Participation ◽  
Ongoing Research ◽  
Research Recruitment ◽  
Research Opportunities ◽  
Research Engagement ◽  
Wide Range ◽  
Tertiary Center

Background: Hispanics are under-represented in Parkinson’s disease (PD) research despite the importance of diversity for results to apply to a wide range of patients. Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research. Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding. Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview. Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

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.

Sign in / Sign up

Export Citation Format

Share Document