Empowering Patients in Research: Highlights from the PATIENT Project Presentation at the Canadian Heart Function Alliance Annual Meeting

MONTREAL, QUE. May 26, 2024. On May 26th the Canadian Heart Function Alliance hosted its annual Heart Failure Update in Montreal, bringing together experts, researchers, and innovators in the field of heart health. At this prestigious event, Dr. Jillianne Code and Dr. Heather Lannon presented the preliminary findings from our groundbreaking research initiative, Promoting Agency Through Innovative Education and Networked Teams (PATIENT).

Unveiling PATIENT: Redefining Patient Roles in Research

The PATIENT project aims to enhance the role of patients in research, ensuring that their voices and perspectives are not just heard but are integral to shaping the direction and outcomes of studies. The project focuses on a concept we call Patient Agency in Research (PAIR), which empowers patients to be active participants and partners in the research process.

Key Definitions and Concepts

Agency refers to taking deliberate actions to achieve desired outcomes. We all possess agency to varying degrees, but we may not fully appreciate it until it feels diminished (Forde, 2024).

Patient Agency in Research (PAIR): This concept highlights patients’ capacity to influence the course of research through their active engagement. It’s about turning patients from passive subjects into proactive partners.

Pilot Study Overview

Our pilot study aims to answer critical questions about how patients perceive and engage in research:

  • How do participants’ learning experiences in the Masterclass influence their perceived agency for research engagement?
  • How do participants’ perceived agency for research engagement contribute to long-term engagement and research efficacy?

The study employs a mixed-methods approach, combining quantitative surveys and qualitative interviews to understand patient agency in research comprehensively.

Participants and Demographics

Our initial cohort includes 15 patient partners who participated in the Masterclass for Patient Partners Engaging in Cardiovascular Research workshop at Vascular 2023. The diverse group has 66% female participants, an average age of 53, and varied educational backgrounds.

Thematic Analysis: Key Findings

From our initial thematic analysis of open-ended survey responses, several key themes emerged:

  1. Understanding and Knowledge Acquisition: Participants reported a better understanding of cardiovascular health and research processes.
    • “I think I have a better understanding of how different cardiovascular conditions affect different people.” (Participant 1)
  2. Empowerment and Confidence: The Masterclass increased participants’ confidence and sense of empowerment.
    • “The class gave me more confidence and tools for effectively participating in research as a patient partner.” (Participant 15)
  3. Patient Involvement and Voice: Highlighting the importance of patient voices in research.
    • “Patients and their caregivers have a valid voice in the research process.” (Participant 2)
  4. Critical Engagement and Decision-Making: Encouraging more critical and intentional engagement in research.
    • “Next time my medical team suggests a change, I would look at the other things in my life before just agreeing.” (Participant 1)
  5. Challenges and Barriers: Identifying challenges and barriers in participation.
    • “My General Anxiety Disorder may have some influence on my answers.” (Participant 14)
  6. Diversity and Inclusion: Emphasizing the need for diversity and inclusion in research.
    • “Inclusion and diversity in the patient partners in research in this group is critical.” (Participant 13)
  7. Support and Continuous Learning: The desire for ongoing support and learning opportunities.
    • “It would be wonderful to have follow-up classes that could explore topics in more depth.” (Participant 9)

Next Steps

Our next steps include finalizing the quantitative survey analysis, completing interviews, and developing an agency codebook to analyze open-ended responses further.

Join Us in Transforming Research

We invite you to join us in this exciting journey to redefine the role of patients in medical research. Your involvement and insights are invaluable. Together, we can turn participants into partners and ensure that research truly benefits from the rich, lived experiences of patients.

For more information, please visit our website [https://alivelab.ca/project/patient/]. Follow us on social media for the latest updates and news from the PATIENT program.

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