In Ontario, patients still must fight to see information that is written about them, used to make decisions about their care and stored in their own medical records.
In recent reporting by the Toronto Star, patients describe months-long waits, high fees and repeated denials. Some are forced to file Freedom of Information (FOI) requests just to understand what has already happened in their care. Others receive records long after they are clinically useful – or never receive them at all.
This is not a minor administrative inconvenience. It affects people’s ability to understand diagnoses, follow treatment plans, advocate for themselves and rebuild trust after harm. And in mental health care, where stigma, power imbalances and vulnerability already exist, lack of access can be especially damaging.
At the same time, there is growing international evidence – and growing Canadian momentum – showing that transparent access to clinical notes is both possible and beneficial. The question is no longer whether patients should be able to read their notes, but why our systems still make it so hard.
What OpenNotes is – and why it matters
OpenNotes is the practice of sharing clinicians’ visit notes with patients through secure electronic portals. It allows people to read what their clinicians write about assessments, diagnoses, treatment plans and follow-up care.
This is not about releasing psychotherapy notes or sensitive internal deliberations. It is about giving patients access to the same clinical documentation that already exists and is used to guide their care.
Globally, OpenNotes has moved from pilot to standard practice in many health systems. According to data from OpenNotes, more than 54 million people now have access to their clinicians’ visit notes. Research consistently shows that when patients can read their notes, they better understand their conditions, feel more in control and are more likely to trust their clinicians.
For families and caregivers, access can be equally important. Notes can help clarify next steps, reduce confusion and support shared decision-making, particularly when patients are navigating complex or ongoing care.
OpenNotes at its core, aims to shift how we think about patients’ roles in their own care.
Transparency is not an add-on. It is a foundation for partnership.
Why access matters even more in mental health care
Mental health care presents unique challenges when it comes to documentation and access. Notes often contain subjective observations, evolving diagnoses and language shaped by clinical training rather than patient understanding. There are legitimate concerns among clinicians about how notes might be interpreted, whether they could cause distress or how to document sensitive topics safely.
These concerns should not be dismissed. But they must be weighed against the very real harms caused by secrecy and delay.
Mental health care often involves long diagnostic journeys, trial-and-error treatment and moments of profound vulnerability. Patients are frequently expected to remember complex information during times of distress and then act on it later without a written record they can review.
When patients cannot access their notes, they lose an important tool for making sense of their care. Errors go uncorrected. Misunderstandings persist. Trust erodes.
Research shows that many of the fears associated with OpenNotes do not materialize at scale. With appropriate guidance and support, clinicians adapt their documentation practices and therapeutic relationships are not undermined. In many cases, they are strengthened.
The question is not whether mental health documentation requires care and nuance. It does. The question is whether withholding access is the safest or most ethical response.
When access is denied, patients escalate – not disengage
The Toronto Star’s heart-breaking reporting makes one thing clear: when patients cannot access their records through routine channels, they do not simply give up.
They file formal requests. They appeal denials. They pay fees. They wait – sometimes for months – for information that could have informed earlier decisions or prevented harm.
In Ontario, the Freedom of Information and Protection of Privacy Act (FIPPA) allows individuals to request records held by public institutions, including hospitals, while the Personal Health Information Protection Act (PHIPA) affirms patients’ rights to access and correct their own health information. The Ontario government outlines the FOI process, including timelines and fees, on its website.
But FOI was never designed to be a routine way for patients to understand their care. It is a legal mechanism, not a clinical one. When people are pushed into formal requests just to read their own notes, something in the system has already gone wrong.
When access to notes is delayed or denied, the system creates barriers rather than protection. It forces people into adversarial processes at moments when collaboration is needed most.
What’s happening at CAMH – and what we’re learning
Patient partners at Centre for Addiction and Mental Health (CAMH) have co-created a series of testimonials that speak directly to why access to clinical notes matters. These firsthand accounts, available through the Digital Mental Health Lab website, offer insight into both the personal impact and system-level urgency of this work.
At CAMH, work is underway to better understand how OpenNotes can be implemented responsibly in mental health settings. Early findings point to a clear need for training and resources focused on writing notes that are not only clinically accurate and adhere to medicolegal requirements, but are also person-centered, compassionate and safe.
This work recognizes an important truth: OpenNotes is not just about providing electronic access to notes. It is a culture change in how clinicians document.
Clinicians can also access the OpenNotes Implementation Guidebook, developed by CAMH and patient partners, which provides practical strategies for introducing OpenNotes effectively and responsibly.
Importantly, this work does not treat transparency as an all-or-nothing proposition. Safeguards matter. Exceptions must be clearly defined. But default secrecy should not be the starting point.
Why language matters – and how inclusive writing supports OpenNotes
One of the most common concerns clinicians raise about OpenNotes is language: What if patients are hurt by how something is written? What if clinical terms are misinterpreted? What if documentation causes harm?
These are valid questions – and point to the need for better writing, not less access.
At CAMH, the OpenNotes initiative is aligned in spirit with the development of the Clear & Inclusive Writing Guide, a resource designed to support staff and communicators in writing about patients with care, dignity and respect. Language shapes how patients understand themselves and how they experience care. Words can validate – or cause harm.
In a recent Healthy Debate article on inclusive language in health care, my colleague Jess Taylor-Calhoun and I highlight that language is not cosmetic. It is clinical. It affects trust, engagement and outcomes. The same principle applies to OpenNotes.
If we want patients to safely read their notes, we must support clinicians in writing notes that are both clinically sound and use person-first language. Transparency and dignity are not competing goals. They are mutually reinforcing.
There is a fine line between safeguarding and gatekeeping, and too often policies err on the side of withholding information “just in case.” The result is a system in which access depends on discretion rather than principle.
Transparency is not risk free. But neither is restricted access.
Where Canada goes from here
Canada is not starting from scratch. We have privacy legislation that affirms patients’ rights to their records. We have digital infrastructure that can support timely access. We have research, lived experience and international examples to learn from.
What we lack is consistency and cohesion.
To move forward, health systems must:
- Treat access to notes as a standard part of care, not an administrative favour.
- Invest in clinician training on person-first language and inclusive documentation.
- Involve patients in designing and evaluating OpenNotes implementation.
- Be transparent about when and why access is restricted.
Patients should not have to file formal requests to understand their own care. They should not have to wait months to read information that already exists. And they should not be excluded from conversations that shape their health and lives.
OpenNotes is not about surveillance or blame. It is about collaboration and partnership.
And partnership begins with equal access.
