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January 07 , 2019

A CIHR Working Group made up of patients, researchers and ethicists has co-developed draft Ethics Guidance for Developing Research Partnerships with Patients, and is inviting your feedback. The Guidance builds on the SPOR Patient Engagement Framework, and is intended as an educational resource primarily for patients and health researchers, as well as research institutions and funders of research. The Guidance focuses on ethical concerns that need to be addressed to maintain trust in research partnerships across the research lifecycle.

The Working Group brings together diverse voices, expertise, and lived experience, including Indigenous perspectives. The Guidance:

  • Identifies ethical principles and conditions for establishing trust in research partnerships with patients.
  • Reflects on key ethical concerns such as: legitimation, tokenism and representation; conflicts of interest; power imbalances; systemic and structural barriers to patient engagement; benefits and harms; and confidentiality of information.
  • Grounds the reflections in partnership roles for patients at every stage of the research lifecycle.

 Feedback on the Draft CIHR Ethics Guidance for Developing Research Partnerships with Patients can be submitted from November 26, 2018 until January 28, 2019.

In addition to providing comments on specific wording in the text, your comments on the following questions are invited:

  1. Does this guidance address sufficiently the important ethical concerns in establishing meaningful research partnerships between patients and researchers? Are the reflections helpful?
  2. Are there ethical concerns that are missing from the document?
  3. Do you have suggestions for how this guidance could be customized for specific audiences?

The CIHR welcomes feedback to be submitted through the online form. You can also email comments to:

A summary of “what was heard” without attribution to specific individuals or groups will be posted after consultations. Feedback will inform the final version, which will be released in 2019.

Please click here to access the Draft CIHR Ethics Guidance for Developing Research Partnerships with Patients.

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