Decision Aids for Patient Partner Engagement with Clinical Trials
Co-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).
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. Decision aids are usually tools used by patients and doctors to make treatment decisions together. These decision aids for patient engagement with clinical trials are based on healthcare decision aids and use the same type of format to help make a decision. 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 and clinical trials.
- My Priorities – tools to help decide on the priority areas for patient engagement on the project.
- Learn More –more in-depth information for those who wish to explore in more detail.
- My Readiness – aligning priorities with perceived benefits and risks of engaging as or with patient partners.
- My Decision – making 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.
Our team has developed this video to introduce you to the concepts of patient engagement and patient-oriented research and to walk you through using the decision aids.
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, and with additional funds from the Ontario SPOR Support Unit (OSSU).