Patient Engagement & Advocacy in Research

Patient study partners play a vital role in ensuring that research is conducted in a way that is responsive to the needs and perspectives of the patient community, ultimately leading to more effective and meaningful research outcomes.

Some of the benefits that come with involving patient partners include:

• Insight into Patient Experience: Study partners, often individuals who have direct experience with the condition being studied, offer invaluable insights into the patient experience. This firsthand perspective can shape the research process, ensuring that studies are designed to address the most pressing concerns and priorities of patients.
• Enhanced Participant Engagement: Having a patient study partner involved in the research team can enhance participant engagement and recruitment. Patients may feel more comfortable participating in studies when they see that their perspectives are being valued and incorporated into the research process.
• Improved Study Design and Implementation: Patient study partners contribute to the development of research protocols, ensuring that studies are designed in a way that is practical and relevant to patients' lives. They can also provide feedback on study materials and procedures to enhance their clarity and accessibility.
• Study Interventions: Patient study partners can help ensure that research is conducted with sensitivity to the needs and preferences of participants. They can provide input on issues such as informed consent, privacy protections, and the potential impact of study interventions on participants' quality of life.
• Effective Communication: Patient study partners serve as liaisons between researchers and the broader patient community, helping to facilitate effective communication and collaboration. They can help researchers communicate study findings to patients in a way that is understandable and meaningful, and they can also help researchers solicit feedback from patients on study results and implications.
• Promotion of Patient-Centered Research: By including patient study partners in research teams, studies are more likely to be patient-centered, focusing on outcomes and interventions that are meaningful and relevant to patients. This can lead to research that has a greater impact on patient care and quality of life.

As a patient partner on our study team, you will collaborate with researchers, healthcare professionals, and other stakeholders to provide valuable input throughout the research process. Your role may include, but is not limited to, the following responsibilities:

• Providing insights and perspectives based on your lived experience as a patient or caregiver.
• Participating in regular meetings to discuss study progress, research findings, and potential implications for patient care.
• Reviewing study materials, such as research protocols, consent forms, and patient-facing materials, to ensure they are clear, understandable, and respectful of patient needs.
• Assisting with the recruitment of study participants and helping to ensure that their voices are heard and respected throughout the research process.
• Offering feedback and suggestions to researchers on ways to improve the study design, implementation, and dissemination of findings.

We welcome applications from individuals who meet the following qualifications and requirements:

• Have personal experience as a patient or caregiver related to the research topic.
• Possess excellent communication and collaboration skills.
• Can commit to attending regular meetings and actively participating in study activities.
• Are passionate about contributing to research efforts aimed at improving patient outcomes and healthcare delivery.
• Value diversity, equity, and inclusion, and are committed to representing the perspectives of all patients, including those from marginalized or underrepresented communities.

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