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Resources for Engaging Patients

As part of CTO’s efforts to engage patients and the public with clinical trials, we are leading and actively participating in initiatives to build resources and tools to help the community work together. Some resources and initiatives are highlighted below.

Patient Engagement in Research: Catalogue of Organizations in Ontario

Patient engagement in research is now a part of many types of organizations including: research institutions, health care centres, government organizations and not-for-profit organizations. In 2019, CTO participated in a project which mapped patient engagement in research across organizations in Ontario. The project was commissioned by the Ontario SPOR SUPPORT Unit (OSSU) and executed by the Knowledge Translation Program at St. Michael’s Hospital – Unity Health Toronto. The final product of the collaboration is a catalogue of the organizations in Ontario that currently have activities and policies for patient engagement in research, including accounts of patient and partner experiences in those engagement processes. View the complete catalogue here.

Resources to Facilitate Patient Engagement with Clinical Trials

CTO has contributed to the development of the Patient Engagement Quality Guidance, through active participation in the Patient-Focused Medicines Development Initiative, an initiative that aims to develop guidance for organizations working with patients throughout the medicines development lifecycle. This practical guide will help you plan, develop and assess the quality of patient engagement in your project and it was co-created with stakeholders across the medicines development spectrum through an iterative process that included a public consultation. 

Decision Aids for Patient Partner Engagement with Clinical Trials

Led by CTO, a team of patients, researchers, and investigators, as well as people involved in research networks, health charities, and patient organizations developed these tools to build capacity and increase engagement of patients with clinical trials. 

Patient-oriented research is about engaging patients, their caregivers, and families as partners in the research process. This engagement helps to ensure that studies focus on patient-identified priorities, which ultimately leads to better patient outcomes (http://www.cihr-irsc.gc.ca/e/41204.html).

Patient Decision Aid Investigator Decision Aid

The tools, called decision aids, are aimed at helping people decide if they are ready to engage with each other as part of a patient-oriented research team. One tool has been developed for patients and one has been developed for researchers and investigators, these two tools provide similar information, from a different perspective. The decision aids each have five sections:

  • Introduction – some basic information about patient-oriented research.
  • Learn More –more in-depth information for those who wish to explore in more detail.
  • My Values – asks you to consider which of your values are most important with respect to patient-oriented research.
  • My Trade-Offs – asks you to rank statements of importance to you, and.
  • My Decision – which will help you formulate your final decision about your willingness to engage in patient-oriented research.

Reading and working through each section is meant to help you consider a number of factors related to patient-oriented research in clinical trials, as well as provide you with links to other reliable resources and information.

This project on developing decision aids was funded through a CIHR Strategy for Patient-Oriented Research (SPOR) – Patient Oriented Research Collaboration Grant (Fall 2017, #397455) with matching funds from Clinical Trials Ontario.

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