scholarly journals Leveraging Patient/Community Partnerships to Disseminate Patient Centered Outcomes Research in Geriatrics

Geriatrics ◽  
2019 ◽  
Vol 4 (2) ◽  
pp. 35
Author(s):  
Lee A. Lindquist ◽  
Anne Seltzer ◽  
Chris Forcucci ◽  
Norine Wong ◽  
Vanessa Ramirez-Zohfeld
Keyword(s):  
Outcomes Research ◽  
Qualitative Interviews ◽  
Medical Patient ◽  
Community Partnerships ◽  
Lessons Learned ◽  
Future Research ◽  
Community Partner ◽  
Patient Centered ◽  
Community Partners ◽  
Future Researcher

Background: With the growth of patient-centered outcomes research (PCOR), partnerships between researchers and patients have presented novel opportunities for disseminating results. A large gap exists in disseminating patient-centered research results to older adult patient end-users. We sought to examine the experiences of patient/community partners in disseminating PCOR results and characterize lessons learned that may facilitate future researcher-patient/community dissemination partnerships. Methods: Patient/community partners who participated in geriatrics-focused PCORI-funded research and were active in disseminating results, as part of their planned activities, were recruited for one-to-one qualitative interviews. Constant comparative and thematic analysis were used to identify and describe common themes that emerged in a survey of open-ended questions. Results: Ten individuals (four community partners, six patients) aged 55–87 years were interviewed. Analysis revealed that for successful dissemination, subjects felt it was vital to reach out to people affected by the results, leverage personal stories, and tap into pre-developed programming. Patient/Community partners identified potential audiences through word-of-mouth, community requests, and mapping a list of audiences—targeting those directly affected as well as those who worked with the audience (e.g., not specifically medical). Patient/community partners recommended that researchers engage patient/community partners for suggestions on audiences, show empathy, include diverse populations, and maintain a community-focus. One community partner stated, “Why wouldn’t we help disseminate results? It’s a no-brainer. We know people!” Conclusion: Patient/community partners provide effective ways to communicate results, new audiences to reach, improved communication with different audiences, and improved credibility of the findings. The lessons learned have implications for assisting future research-patient/community partnerships in the dissemination of their patient-centered research.

Negotiating Participatory Research Processes With Domestic Violence Program Staff to Obtain Ecologically Valid Data

2019 ◽  
Vol 34 (23-24) ◽  
pp. 4817-4837 ◽  
Author(s):  
Nkiru Nnawulezi ◽  
Cris M. Sullivan ◽  
Suzanne Marcus ◽  
Latoya Young ◽  
Margaret Hacskaylo
Keyword(s):  
Participatory Research ◽  
Partner Violence ◽  
Ecological Validity ◽  
Research Process ◽  
Lessons Learned ◽  
Future Research ◽  
Community Partner ◽  
Community Partners ◽  
Team Members ◽  
Staff Members

The choice of research design affects not only internal and external validity but ecological validity as well. Ecological validity refers to the extent to which data are based in and relevant to real-world settings. One way for researchers to maximize the likelihood of achieving ecological validity is to design studies with community partners that use participatory approaches. Engaging deeply with community partners in determining what to study, how to measure constructs of interest, interpreting results, and using findings to create change is one means of conducting research that is likely to produce findings that are meaningful to communities. Conducting in-depth, participatory research within agencies providing crisis supports to individuals who have experienced trauma creates an additional level of complexity in the research process. This article presents a case example of how academic researchers and staff members of a nonprofit organization working with survivors of intimate partner violence collaborated on an evaluation of the community partner agency. As part of this process, the team members had to be continually aware of and responsive to the nature of crisis-focused work. We provide a reflexive account of the lessons learned and recommendations for future research.

scholarly journals Voices of Community Partners: Perspectives Gained from Conversations of Community-Based Participatory Research Experiences

2020 ◽  
Vol 17 (14) ◽  
pp. 5245 ◽  
Author(s):  
Heather J. Williamson ◽  
Carmenlita Chief ◽  
Dulce Jiménez ◽  
Andria Begay ◽  
Trudie F. Milner ◽  
...  
Keyword(s):  
Participatory Research ◽  
Community Based Participatory Research ◽  
Lessons Learned ◽  
Cultural Humility ◽  
Consensus Method ◽  
Community Partner ◽  
Open Communication ◽  
Community Based ◽  
Community Partners ◽  
Underserved Communities

Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners’ insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner’s voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious.

scholarly journals Lessons on Patient and Stakeholder Engagement Strategies for Pipeline to Proposal Awards

2018 ◽  
Vol 28 (Supp) ◽  
pp. 303-310 ◽  
Author(s):  
Ashley Wennerstrom ◽  
Benjamin F. Springgate ◽  
Felica Jones ◽  
Diana Meyers ◽  
Norris Henderson ◽  
...  
Keyword(s):  
Los Angeles ◽  
Outcomes Research ◽  
Technical Assistance ◽  
African American Men ◽  
Knowledge Exchange ◽  
Lessons Learned ◽  
Research Network ◽  
Patient Centered ◽  
Research Partnerships ◽  
New Research

The Patient Centered Outcomes Research Institute (PCORI) supports patient-centered clinical comparative effectiveness research (CER) including health disparities and engagement portfolios. In 2013, PCORI launched the Pipeline to Proposal (P2P) mechanism to support development of nov­el patient- and stakeholder-centered part­nerships focused on designing clinical CER funding proposals. By providing a tiered structure of successive small contracts and technical assistance, the P2P mechanism encourages development of new research partnerships among diverse stakeholders. As a comparatively new field, patient-centered outcomes research (PCOR) has few well-delineated methods for engaging patients and other non-scientists in effective teams with academics or clinicians to develop and implement rigorous, scientific research pro­posals. Community partnered participatory research (CPPR) provides a useful frame­work for structuring new partnerships.In this article we highlight the origins, de­velopment, and prospects of three current examples of funded P2P initiatives based in New Orleans and Los Angeles. We outline how these projects – Prisoner to Patient, the NOLA Partnership, and Resilience Among African American Men – use CPPR principles. We also describe how they have collaborated with, and contributed to, a two-way learning and knowledge exchange among members of the PCORI-funded Community and Patient Partnered Research Network. Lessons learned may be ap­plicable to other groups planning to create new partnerships focused on implementing PCOR.Ethn Dis. 2018;28(Suppl 2):303- 310; doi:10.18865/ed.28.S2.303.

Incorporating Stakeholder Perspectives on Scarce Resource Allocation: Lessons Learned from Policymaking in a Time of Crisis

2021 ◽  
Vol 30 (2) ◽  
pp. 390-402
Author(s):  
BETHANY BRUNO ◽  
HEATHER MCKEE HURWITZ ◽  
MARYBETH MERCER ◽  
HILARY MABEL ◽  
LAUREN SANKARY ◽  
...  
Keyword(s):  
Policy Development ◽  
Ethical Decision Making ◽  
Stakeholder Involvement ◽  
Organizational Ethics ◽  
Lessons Learned ◽  
Future Research ◽  
Patient Centered ◽  
Stakeholder Perspectives ◽  
Stakeholder Input ◽  
Ethics Dilemma

AbstractThe coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in the policy development process. Involving the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work.

scholarly journals Applying Engagement Frameworks to Case Scenarios: A Retrospective Analysis

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 789-789
Author(s):  
Erin McGaffigan
Keyword(s):  
Interest Group ◽  
Research Study ◽  
Lessons Learned ◽  
Future Research ◽  
User Engagement ◽  
Ethical Considerations ◽  
Patient Centered ◽  
Factors Influencing ◽  
Creative Solutions ◽  
Study Case

Abstract The LeadingAge LTSS Center @UMass Boston has worked with the Patient-Centered Outcomes Research Institute (PCORI), service recipients, researchers, and providers since 2017 to understand the obstacles and creative solutions for meaningful and effective engagement in research. The LTSS Center’s work has been informed by multiple engagement frameworks, including Dr. McGaffigan’s 2011 PAE Attention Framework, the result of a multi-state, multi-site research study examining the factors to user engagement in Cash & Counseling programs. In this presentation, we will apply the PAE Attention Framework (2011), the PCORI Engagement Rubric (2014), and the NHS INVOLVE Framework (2015) to three research study case scenarios to understand the strategies used, outcomes realized, and factors influencing engagement success. Lessons learned from each and their application to future research will be discussed, including ethical considerations. Part of a symposium sponsored by the Patient/Person Engagement in Research Interest Group.

scholarly journals Training in patient-centered outcomes research for specific researcher communities

2017 ◽  
Vol 1 (5) ◽  
pp. 278-284
Author(s):  
Douglas P. Landsittel ◽  
Larry Kessler ◽  
Christopher H. Schmid ◽  
Paul Marantz ◽  
Maria E. Suarez-Almazor ◽  
...  
Keyword(s):  
Comparative Effectiveness Research ◽  
Outcomes Research ◽  
Comparative Effectiveness ◽  
Training Programs ◽  
Healthcare Research ◽  
Lessons Learned ◽  
Effectiveness Research ◽  
Patient Centered ◽  
Experiential Training ◽  
Number Of Publications

A number of publications have discussed approaches to training the scientific workforce in comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). To meet this need, funders have offered resources for developing educational materials and establishing training programs. To extend these efforts into specific researcher communities, the Agency for Healthcare Research and Quality developed an R25 Funding Opportunity Announcement that called for basic, advanced, and experiential training for a specific researcher community in collaboration with associated program partners. This paper describes the strategies developed by the 5 subsequently funded programs, their specific researcher communities and program partners, and the challenges associated with developing in-person and online programs. We focus on lessons learned that can be translated into developing training programs nationwide and on training for the special populations of interest. We also discuss the creation of a sustainable network for training and the conduct of comparative effectiveness research/patient-centered outcomes research in targeted communities.

scholarly journals How perceptions of community environment influence health behaviours: using the Analysis Grid for Environments Linked to Obesity Framework as a mechanism for exploration

2016 ◽  
Vol 36 (9) ◽  
pp. 175-184 ◽  
Author(s):  
L. M. Nieuwendyk ◽  
A. P. Belon ◽  
H. Vallianatos ◽  
K. D. Raine ◽  
D. Schopflocher ◽  
...  
Keyword(s):  
Physical Activity ◽  
Healthy Eating ◽  
Overweight And Obesity ◽  
Decision Makers ◽  
Social Health ◽  
Future Research ◽  
Community Partner ◽  
Community Partners ◽  
Study Results ◽  
People’S Perceptions

Introduction Overweight and obesity are influenced by a complex interplay of individual and environmental factors that affect physical activity and healthy eating. Nevertheless, little has been reported on people’s perceptions of those factors. Addressing this critical gap and community partner needs, this study explored how people perceived the influence of micro- and macroenvironmental factors on physical activity and healthy eating. Methods Community partners wanted the study results in a format that would be readily and easily used by local decision makers. We used photovoice to engage 35 community members across four municipalities in Alberta, Canada, and to share their narratives about their physical activity and healthy eating. A combination of inductive and deductive analysis categorized data by environmental level (micro vs. macro) and type (physical, political, economic, and sociocultural), guided by the Analysis Grid for Environments Linked to Obesity Framework. Results Participants conceptualized health-influencing factors more broadly than physical activity and healthy eating to include “community social health.” Participants spoke most often about the influence of the microenvironment (n = 792 ANGELO Framework coding tallies) on their physical activity, healthy eating and community social health in comparison to the macroenvironment (n = 93). Photovoice results provided a visual narrative to community partners and decision makers about how people’s ability to make healthy choices can be limited by macroenvironmental forces beyond their control. Conclusion Focussing future research on macro- and microenvironmental influences and localized community social health can inform practice by providing strategies on how to implement healthy changes within communities, while ensuring that research and interventions echo diverse people’s perceptions.

scholarly journals The Sage Resource Project: Readying Researchers to Transform Research through Engagement

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 150-151
Author(s):  
Rebecca Berman ◽  
Jesse Bella ◽  
Margaret Danilovich ◽  
Rachel Lessem
Keyword(s):  
Older Adults ◽  
Stakeholder Engagement ◽  
Lessons Learned ◽  
Future Research ◽  
Patient Centered ◽  
Advisory Boards ◽  
Model Research ◽  
Funded Project ◽  
Services And Supports

Abstract The Sage Model enables engagement of older adults receiving Long Term Services and Supports (LTSS), a group typically excluded in research. This presentation focuses on lessons learned from The Sage Resource Project, a Patient Centered Outcomes Research Institute funded project. We collaborated with RCMAR and Roybal centers to encourage NIH-affiliated researchers to embrace stakeholder engagement through promotion of the Sage Model. Few studies include an assessment of researcher needs when it comes to stakeholder engagement. We conducted a needs assessment (n=103) finding <50% of researchers presented work to older adults and only 41% interacted with older adults receiving LTSS. However, >90% were likely to attend webinars to learn more. Additionally, 70% of respondents were interested in setting up their own Sage Model research advisory boards. We identify opportunities for transforming LTSS research by including older adults as well as directions for future research on engagement, based on researchers’ identified needs.

scholarly journals Best practices for virtual patient-centered outcomes research team engagement during the era of COVID-19 and beyond: A qualitative research study (Preprint)

2020 ◽  
Author(s):  
Erin K Thayer ◽  
Molly Pam ◽  
Emily Godfrey ◽  
Laura Mentch ◽  
Georgia Brown ◽  
...  
Keyword(s):  
Best Practices ◽  
Outcomes Research ◽  
Team Member ◽  
Lessons Learned ◽  
Ease Of Use ◽  
Structured Interviews ◽  
Patient Centered ◽  
Non Profit ◽  
Online Platforms ◽  
Infection Control Guidelines

BACKGROUND Patient-Centered Outcomes Research (PCOR) engages patients as partners in research and focuses on questions and outcomes that are important to patients. Traditionally done in person, COVID-19 has forced PCOR teams to engage via online platforms. Similarly, virtual engagement is the only safe choice for members of the cystic fibrosis (CF) community who spend their lives living under strict infection control guidelines. In the absence of universal best practices, the CF community developed its own guide to help PCOR teams engage virtually. OBJECTIVE To identify the important attributes, facilitators, and barriers to teams when selecting online platforms. METHODS We conducted semi-structured interviews with CF community members, non-profit stakeholders, and researchers about their experiences using online tools including the effectiveness, efficiency, satisfaction with, and confidence using each platform. Interviews conducted via Zoom conferencing were audio recorded and transcribed. We identified key themes using content analysis with an iterative inductive and deductive coding process. RESULTS Fifteen participants reported using online platforms for meetings, project management, document sharing, scheduling, and communication. When selecting online platforms, participants valued accessibility, ease of use, and integration of the platforms with other platforms. Participants thought successful online collaboration utilized platforms that resemble in-person interactions, recognized team member technological literacy levels, provided intentional alignment of platforms with collaboration goals, and achieved team member buy-in to adopt new platforms. CONCLUSIONS Successful online PCOR engagement requires using multiple platforms in order to fully meet the asynchronous or synchronous goals for the project. This study identified key attributes beneficial for conducting PCOR online, as well as common challenges and solutions to using online platforms. Our study findings provide best practices for selecting types of platforms and lessons learned from online PCOR collaborations.

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