Christina Caron
The New York Times
Originally posted 25 Sept 24
Stunned. Ambushed. Traumatized.
These were the words that Jeffrey, 76, used to describe how he felt when he stumbled upon his therapist’s notes after logging into an online patient portal in June.
There was a summary of the physical and emotional abuse he endured during childhood. Characterizations of his most intimate relationships. And an assessment of his insight (fair) and his judgment (poor). Each was written by his new psychologist, whom he had seen four times.
“I felt as though someone had tied me up in a chair and was slapping me, and I was defenseless,” said Jeffrey, whose psychologist had diagnosed him with complex post-traumatic stress disorder.
Jeffrey, who lives in New York City and asked to be identified by his middle name to protect his privacy, was startled not only by the details that had been included in the visit summaries, but also by some inaccuracies.
And because his therapist practiced at a large hospital, he worried that his other doctors who used the same online records system would read the notes.
In the past, if patients wanted to see what their therapists had written about them, they had to formally request their records. But after a change in federal law, it has become increasingly common for patients in health care systems across the country to view their notes online — it can be as easy as logging into patient portals like MyChart.
There are some significant ethical issues here. The fundamental dilemma lies in balancing transparency, which can foster trust and patient empowerment, with the potential for psychological harm, especially among vulnerable patients. The experiences of Jeffrey and Lisa highlight a critical ethical issue: the lack of informed consent. Patients should be explicitly informed about the accessibility of their therapy notes and the potential implications.
The psychological impact of this practice is profound. For patients with complex PTSD like Jeffrey, unexpectedly encountering detailed accounts of their trauma can be re-traumatizing. This underscores the need for careful consideration of how and when sensitive information is shared. Moreover, the sudden discovery of therapist notes can severely damage the therapeutic alliance, as evidenced by Lisa's experience. Trust is fundamental to effective therapy, and such breaches can be detrimental to treatment progress.
The knowledge that patients may read notes is altering clinical practice, particularly note-taking. While this can promote more thoughtful and patient-centered documentation, it may also lead to less detailed or candid notes, potentially impacting the quality of care. Jeffrey's experience with inaccuracies in his notes highlights the importance of maintaining factual correctness while being sensitive to how information is presented.
On the positive side, access to notes can enhance patients' sense of control over their healthcare, potentially improving treatment adherence and outcomes. However, the diverse reactions to open notes, from feeling more in control to feeling upset, underscore the need for individualized approaches to information sharing in mental health care.
To navigate this complex terrain, several recommendations emerge. Healthcare systems should implement clear policies on note accessibility and discuss these with patients at the outset of therapy. Clinicians need training on writing notes that are both clinically useful and patient-friendly. Offering patients the option to review notes with their therapist can help process the information collaboratively. Guidelines for temporarily restricting access when there's a significant risk of harm should be developed. Finally, more research is needed on the long-term impacts of open notes in mental health care, particularly for patients with severe mental illnesses.
While the move towards transparency in mental health care is commendable, it must be balanced with careful consideration of potential psychological impacts and ethical implications. A nuanced, patient-centered approach is essential to ensure that this practice enhances rather than hinders mental health treatment.
