Patient Engagement and co-creation in research and education

Promoting the Engagement of Patient Partners in the Planning, Conduct and Knowledge Translation of Clinical Pain Research: Findings and Consensus Recommendations from the 2021 International Multi-Stakeholder IMMPACT Meeting

This workshop is informed by the proceedings of the October 2021 IMMPACT (Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials) Meeting: “Patient Engagement in the Planning, Conduct, and Dissemination of Clinical Pain Research.” This meeting was organized by the public-private partnership – ACTTION (Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks) – and brought together 50 diverse partners from the US, Canada, and Europe, including persons with lived pain experience and advocates, clinical and basic scientists, pain journal editors, leaders of pain and/or patient engagement programs at research funding and regulatory agencies, and biopharmaceutical industry representatives. The aim of the meeting was to develop and publish consensus recommendations to aid the international clinical pain research community in incorporating patient partners across the research life cycle. Panelists for the proposed Topical Workshop will present shared values and beliefs, best practices, and guiding principles for meaningful, authentic, and effective patient engagement strategies in clinical pain research. They will also present specific guidance and key recommendations from the IMMPACT Workshop, as well as tools for measuring the impact of patient engagement. International perspectives and lessons learned from clinical pain researchers and patient partners will be shared.

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Authentic, Meaningful and Effective Patient Engagement in Clinical Pain Research: Definitions, Shared Values and Guiding Principles

The term “patient engagement” is often misunderstood by various stakeholders, including scientists, and many other terms have been used to describe this concept, also contributing to confusion. To ground the audience to the topic and true intent of this workshop, Ms. Veasley will begin by providing some historical and foundational information on patient engagement in the planning, conduct and knowledge translation of clinical pain research, including definitions. She will then present shared values and beliefs for the incorporation of patients as true partners in clinical pain research, as well overarching guiding principles for meaningful and authentic engagement that not only improves the science that is being conducted, but also leads to findings that are meaningful to those for whom clinical research is conducted to help – people with pain. Throughout her presentation, Ms. Veasley will share her personal insights and lessons learned from her decades-long experience in being a patient partner in various settings and initiatives, including academic pain research studies, grant review committees, pharmaceutical initiatives, development of national/federal pain research, education and care strategies and programs, and service on advisory committees for various US federal and private pain research initiatives.

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Best Practices, Practical Resources and Best Practices to Overcome Common Barriers to Embedding Patient Engagement in Clinical Pain Research and Knowledge Translation Initiatives

As a pain scientist who has actively incorporated patient engagement in her pediatric pain research and knowledge translation efforts for over a decade, Dr. Chambers will share key insights and lessons learned from her experiences. She will begin with a presentation of commonly perceived and experienced challenges of, and barriers to, incorporating authentic patient engagement from the lens of a clinical scientist, as well as her experience in overcoming these barriers to now incorporating engagement strategies in all of her efforts. She will also present best practices to guide clinical scientists in the inclusion of patient partners in clinical pain research, as well as developed rubrics for the increasing levels of engagement. As a clinical scientist who had to figure out on her own how to embed effective engagement practices into her research and knowledge translation activities, Dr. Chambers will also provide some practical guidance on educational, training and other resources that clinical scientists can access to equip themselves with the necessary skillset to incorporate meaningful patient engagement in their clinical pain research.    

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IMMPACT 2021 Consensus Recommendations for Promoting the Inclusion of Patient Partners Across the Clinical Pain Research Life Cycle and Measuring its Impact

Dr. Holzer will present consensus recommendations from the IMPAACT meeting on patient engagement in the planning, conduct, and dissemination of clinical pain research. In several therapeutic areas, engaging patient research partners at different stages of the clinical research life cycle has gained substantial traction, resulting in a growing number of publications, best practices and specific guidance. However, data on patient partner engagement in clinical trials of pain therapeutics, as well as other types of clinical pain research, are relatively scarce. Early and meaningful involvement of patient partners in clinical pain research can provide improvements at each stage of the research life cycle. These recommendations are generalizable and can be applied to individual studies to elevate the field of pain research through patient engagement toward more meaningful and impactful clinical pain research. Dr. Holzer will also present specific recommendations on tools that can be used to effectively measure the impact of patient engagement on research quality and all research partners.

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