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Patient Engagement Network

About Us

QCRI-PEN is a network of cancer researchers, local cancer patients, survivors & community partners in Kingston and surrounding southeastern Ontario, Canada.

What We Do

Exchange ideas & knowledge of cancer research & care

Plan & deliver cancer educational events in local communities

Develop patient advocacy and patient-centric research opportunities

Our Goal

Build connections between cancer researchers and community stakeholders to engage, empower and advocate for improved cancer knowledge, care & survivorship

QCRI logo

Members

Dr. Andrew Craig (Chair, QCRI Director), Dr. Sheela Abraham (Assistant Prof, QCRI CBG), Dr. Sarah Arrowsmith (BCAK Board of Directors), Dr. Jacqueline Galica (Assistant Prof, QCRI CCE), Dr. Bishal Gyawali (Assistant Prof, QCRI CCE), Dr. Madhuri Koti (Associate Prof, QCRI CBG), Dr. Lois Mulligan (Prof, QCRI CBG), Dr. Chris Nicol (Associate Prof, QCRI CBG), Dr. Mariam Jafri (Assistant Prof, QCRI CCTG), Dr. Leda Raptis (Emeritus Prof, QCRI), Emily Cohen (MSc student, QCRI), Montdher Hussain (MSc student, QCRI), Jake Kment (PhD candidate, QCRI), Brian Laight (MD/PhD student, QCRI), Katie Lindale (MSc student, QCRI), Ava Slotman (MSc student, QCRI), Dr. Kyster Nanan (Project Manager & Education Lead, OMPRN), Dr. Paola Fauerbach (PhD candidate, QCRI), Yvonne Murray (CCTG Patient Engagement Lead), Monica Bacon (community partner), Jason Manuge (patient partner), Allison Slopack (QHS Advancement), Christine Styles (patient partner), Nancy Suenaga (patient partner), Rosemarie Thorne (patient partner), Maureen Hobbs (admin).QCRI-PEN members

Terms of Reference

The goal of the Queen’s Cancer Research Institute-Patient Engagement Network (QCRI-PEN) is to promote the bidirectional exchange of knowledge and ideas between QCRI cancer researchers and patients/caregivers/family members that will inform new patient involvement in cancer research and improve cancer survivorship in southeastern Ontario.

The QCRI-PEN committee will help build connections with local cancer patients, caregivers and family members in Kingston and surrounding communities to establish the network. The committee will contribute to the planning, development and delivery of educational events for the local community that will help inform network participants on topics across the continuum of QCRI research. QCRI investigators and trainees will also interact with network members to learn about lived experiences in cancer care that will inform their research questions and perspectives. The QCRI-PEN committee will also build opportunities for network members to formulate new QCRI-PEN committee initiatives, get involved in QCRI research projects and help assess internal funding competitions. The committee will be informed by best practices for patient engagement (eg. complete CIHR modules), and for equity/diversity/inclusion/indigeneity (EDII) to ensure that the network is inclusive and represents the diversity of local communities. Our vision is to connect cancer researchers with community members to engage, empower and advocate for improved cancer knowledge, care and survivorship.

Short-term goal

Building a connection between QCRI researchers, cancer patients, survivors, and their families who prioritize meaningful engagement in cancer advocacy and research.

Long-term goal

Developing impactful advocacy and research partnerships between clinicians, researchers and persons affected by cancer.

The value for patients that participate in the QCRI-PEN events include

Collaboration: Learning and contributing to the research process by working together with researchers and clinicians as well as other patients, caregivers, and family members.

  • Interpreting scientific findings and their significance for those impacted by cancer
  • Shaping future studies at QCRI by getting involved throughout the research process

 

Education: Gaining insight into research being done at QCRI:

  • Research communications blog on QCRI-PEN website and through social media
  • Research talk series highlighting current research at QCRI geared towards the needs and interests of the local community impacted by cancer

 

Connection: Making connections with others impacted by cancer in a research-minded context:

  • Opportunities to share stories, ideas, lived experiences with like-minded individuals facing relatable circumstances
  • Connecting with the QCRI community, unified in the spirit of combatting cancer together

Actions & Reporting

The committee will meet monthly (on average; zoom or in person) and will report on their progress quarterly to the Executive Management Committee of the QCRI. Working groups with focus on education, communications and research opportunities (amongst other potential topics) will be struck to advance these areas within the QCRI-PEN and report back to the full committee at regular meetings.

Educational Events

QCRI-PEN is actively developing plans for new public educational events to address current gaps in knowledge, misinformation, and recent advances in cancer research and cancer care. Please contact us at qcri@queensu.ca with any suggestions for topics of interest. We provide some of the currently available educational videos geared towards cancer patients/survivors and the public. 

  1. QCRI Cancer Educational Event (Nov 26, 2022) supported by Gairdner Foundation; see videos

Research

QCRI PEN is developing new opportunities to engage cancer patients/survivors and caregivers in research projects. This includes:

  1. Research led by Dr Jacqueline Galica on cancer survivorship.
  2. How patient voices are also integrated into the planning and development of cancer trials conducted by the Canadian Cancer Trials Group.
  3. An informative presentation from Dr Elizabeth Eisenhauer (Emeritus Professor, Oncology) outlines how patients/caregivers/public can interpret the headlines about new discoveries in cancer research and cancer care.
  4. Metastatic breast cancer patients in Kingston & Ottawa can participate in a clinical trial to test whether a blood test from mDETECT (a startup company launched by QCRI researchers) can improve monitoring responses to therapies.