Patients' Associations as Co-Creators of Knowledge: Tools and Insights into Stakeholders’ Engagement Process. The Experience of the ProSafe Project for Advancing Treatment Safety in Proximity Medicine

Author:

Moretti Francesca1,Colpo Silvia1,Montresor Sara1,Facchinello Daniela2,Robello Raffaella2,Mazzi Mariangela1,Tardivo Stefano1,Stagi Lisa2,De Stefano Luisa2,Zotti Andrea Ilaria2,Ambroso Luigi3,Destro Cristina4,Leone Salvo5,Petruzzelli Davide6,Moretti Ugo1,Rimondini Michela1

Affiliation:

1. University of Verona

2. Roche S.p.A.

3. Federazione delle Associazioni Emofilici ONLUS – FEDEMO

4. Women Against Lung Cancer in Europe ONLUS – WALCE

5. Associazione Nazionale per le Malattie Infiammatorie Croniche dell'Intestino (Colite Ulcerosa e Malattia di Crohn) - A.M.I.C.I. ETS

6. La Lampada di Aladino ETS

Abstract

Abstract

Background. Active involvement of stakeholders in research is crucial to validate findings and facilitate their practical application for enhancing the health of the participating community. Despite a growing body of evidence on the implementation of participatory research (PR) in various contexts, evidence on practical tools and strategies for translating PR principles into practice is limited. The main aim of the study is to provide a detailed description of the co-creation process of a Community-Based Participatory Research (CBPR) project, named ProSafe, emphasizing community engagement actions and proposing practical tools and strategies for fostering collaboration. The ProSafe project involves academic researchers, Presidents and members of four Patient Associations (Patient Safety Council, PSC), and a pharmaceutical company which supported the project and facilitated the partenership. The study involves the co-creation of a comprehensive survey exploring and comparing community and healthcare professional perspectives on therapeutic safety challenges arising from the territorial reorganization of the proximity network foreseen by Italian Resilience and Recovery Plan. Results: The structured and problem-oriented methodology of ProSafe identifies several practical tools and strategies for survey and project co-creation, including a SWOT analysis to systematically assess strengths, weaknesses, opportunities, and threats, and develop improvement strategies from the co-researchers’ perspective. A framework named OPERA-PACT (Opening a Participatory and Equitable Research Agreement based on Partnership, Awareness, Collaboration, and Trust) was co-created with the PSC to provide a structured way for sharing a formal agreement and commitment toward a set of principles, values, and attitudes that characterize a collaborative partnership. Within the framework, a commitment to continuous monitoring, verification, and feedback is valuable, as it plays a key role in promoting virtuous cycles of improvement and fostering partnership and involvement over the long-term. Conclusions: All instruments, strategies, and methodological insights proposed in the paper may serve as useful and practical support to ensure communities may have increasingly strong voices in research, contributing to producing valid and translational results. The process of partnership identity built with the implementation of OPERA-PACT may help synchronize team members to the right atmosphere and create the basis for future efficient collaboration.

Publisher

Research Square Platform LLC

Reference33 articles.

1. Vaughn LM, Jacquez F. Participatory Research Methods – Choice Points in the Research Process. J Particip Res Methods [Internet]. 2020 Jul 21 [cited 2024 Jan 30];1(1). Available from: https://jprm.scholasticahq.com/article/13244-participatory-research-methods-choice-points-in-the-research-process.

2. The Value and Challenges of Participatory Research: Strengthening Its Practice;Cargo M;Annu Rev Public Health,2008

3. The rights (and responsibilities) of the public to advance health through research;Jotterand F;Arch Public Health,2021

4. Israel BA, Eng E, Schulz AJ, Parker EA. Methods for Community-Based Participatory Research for Health.

5. Holkup PA, Tripp-Reimer T, Salois EM, Weinert C. Community-based Participatory Research: an approach to intervention research with a Native American community. 2009.

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3