Research As it Happens: Sharing Patients’ Stories About the Impact of OpenNotes

"Nothing About Me, Without Me (Including My Health Record)" project 

This research snapshot was written by Vidhi Modha and is a plain-language summary of project activities for the "Nothing About Me, Without Me (Including My Health Record)" project. 

What You Need to Know 

The “Nothing About Me, Without Me (Including My Health Record)” project aims to support the adoption of OpenNotes in Ontario’s mental health system by sharing patients' stories about their lived experience accessing their electronic mental health records.  

This project is led by Dr. Gillian Strudwick’s Digital Mental Health Lab at the Centre for Addiction and Mental Health (CAMH). From May to September 2025, the project team has worked alongside a lived-experience patient advisory committee to co-create poster and video testimonials advocating for OpenNotes. These testimonials both highlight the benefits of providing patients with access to their notes and underscore the need for improved clinician practices when writing notes, including minimizing medical jargon and eliminating stigmatizing language. Ultimately, the project team will share these testimonials in addition to the educational OpenKM Toolkit with Ontario mental health organizations to advocate for OpenNotes and to encourage clinicians to adopt improved clinical documentation practices. 

Funding for this project was provided by the Ontario SPOR Support Unit, which is supported by the Canadian Institutes of Health Research, the Province of Ontario and partner Ontario hospital foundations and institutes.

The Research 

OpenNotes is an international movement which advocates for providing patients with fulsome access to their electronic clinical documentation through patient portal platforms. While patients in Ontario have the right to request their medical records through the Personal Health Information Protection Act (PHIPA), accessing these notes can be challenging and may involve delays, administrative barriers or additional costs. Patient portals can help streamline access. Unfortunately, even when patient portals are in place, clinician documentation practices may still fall short of OpenNotes standards. Clinical notes may be incomplete, incorrect, missing, or include medical jargon not easily understood by patients.  

OpenNotes advocates for improved accessibility and transparency of clinical note communication in healthcare – including using language that is accessible and understandable by the patients reading these notes. This includes focusing on including person-centered terms and reducing instances of acronyms or stigmatizing language. When implemented, OpenNotes has many proven benefits, including strengthening the therapeutic alliance, improving patient recall and adherence to their care plan, and empowering patients to play an active role in their care.  

What did the researchers do? 

To motivate healthcare organizations and clinicians to adopt OpenNotes, the “Nothing About Me, Without Me (Including My Health Record)” project collaborated with lived experience advisors to share their stories of the positive impact that access to their clinical notes has had on their care experience. An advisory committee comprised of 6 people with lived experience of a mental health and/or substance use condition joined the project team as advisors. From May to September 2025, advisors joined monthly virtual meetings to co-create and refine their personal stories. These stories have been developed into final testimonials; including 18 poster testimonials and 4 video testimonials.    

Testimonials created throughout the “Nothing About Me, Without Me (Including My Health Record” project are currently being shared with mental healthcare workers alongside an educational toolkit. This toolkit was created in collaboration with 23 Ontario psychiatric clinicians as part of a 2022 qualitative descriptive study which explored their perceptions of OpenNotes through virtual interviews. This OpenNotes Knowledge Mobilization (OpenKM) Toolkit acts as a practical guidebook designed to support the adoption of OpenNotes in Canadian psychiatric contexts and help clinicians think critically about the impact of language used in their daily clinical documentation.  

Future Directions and Applications 

The primary goal of this project is to raise awareness about OpenNotes and support mental health organizations in adopting more transparent and person-centered documentation practices. The patient testimonials and OpenKM Toolkit are currently being shared through various Knowledge Translation (KT) approaches. This project’s knowledge mobilization strategy emphasizes the value of providing patients with electronic access to their mental health clinical documentation and seeks to improve processes for early identification of documentation sharing best practices across Ontario mental healthcare organizations. The project team will continue to disseminate project materials and resources to relevant mental health organizations, health policymakers and educators, regulatory colleges, and health professional governing bodies in order to inspire them to take action and play their part in providing patients with greater access to their health information.  

How can you use this research? 

You can help advocate for OpenNotes by sharing these patient testimonials within your own organization to encourage your network to adopt improved clinical documentation skills and showcase the impact OpenNotes has on patients. 

About the researchers 

This project was led by members of the Digital Mental Health Lab at CAMH, including Charlotte Pape, Iman Kassam, Shanuki Goonasekera, Keri Durocher, and Dr. Gillian Strudwick. This project could not have happened without the support and collaboration of the project lived experience advisors: Sarah K., Emily F., Charlotte M., and Don M.