Experiences of Patients with Severe Mental Illness Reading Their Open Notes: Qualitative Study on Effects of Online Record Access on the Therapeutic Relationship

Imagine the human mind as a complex, sometimes stormy landscape. For people navigating this terrain with severe mental illnesses, the path can be foggy, and the map is often held by someone else: their doctor. In the world of healthcare, there's a growing movement called "Open Notes." Think of it like handing the passenger a copy of the driver's logbook. Instead of just sitting in the back seat and guessing what the driver is thinking or writing down, the passenger can read the notes in real-time. This isn't just about reading words; it's about transparency, trust, and sharing the steering wheel. While this idea has been tested in general medicine for years, it's a bit like a new, uncharted island for mental health. Doctors have sometimes worried that reading these notes might be too scary for patients, like showing a map of a storm to someone already in a panic. But what if the map actually helps them navigate the storm better?

This study dives into that very question. Researchers in Germany wanted to see what happens when patients with severe mental illnesses get to read their doctors' notes online. They didn't just ask, "Did you like it?" They asked, "How did this change your relationship with your doctor? Did it help you manage your life?" They interviewed 13 patients who were already using this system. The findings suggest that, contrary to some fears, opening the logbook didn't cause a crash. Instead, it seemed to smooth out the ride. The patients reported feeling more understood, more in control, and more trusting of their doctors. It turned out that for many, seeing the doctor's thoughts written down didn't feel like an attack; it felt like a bridge.

The Study: Unlocking the Logbook

The researchers, led by Mareike Weibezahl and her team, conducted a qualitative study involving 13 outpatients with severe mental illnesses (SMI). These weren't people in the middle of an acute crisis; they were stable enough to participate in a research project. The team used a special app called PEPPPSY, which allowed patients to read their clinical notes and even leave comments for their doctors. The doctors would then reply, creating a digital conversation thread.

The team sat down (or rather, spoke on the phone) with these 13 patients, ranging in age from 20 to 62, and asked them to spill the beans on their experiences. They wanted to know: Did reading the notes make them feel better or worse? Did it change how they felt about their treatment?

What They Found: The Good, The Bad, and The Surprising

1. The "Second Pair of Eyes" Effect
One of the biggest surprises was how patients used the notes to check their own reality. Imagine you are in a foggy room, and you can't quite tell if the walls are closing in or if you're just imagining it. The notes acted like a flashlight. About half of the patients said that reading the doctor's objective description of their symptoms helped them understand their own condition better. One patient, Fiona, mentioned that seeing her diagnosis written down clearly helped her accept it. Another, Nora, realized that when she was very sick, she had minimized how bad things were, but the doctor's notes showed the clinical reality, helping her take her situation more seriously. It was like having a second perspective that wasn't clouded by the illness itself.

2. The "Digital Diary" for Self-Management
Many patients started treating their notes like a personal diary or a GPS for their journey. Eight out of 13 patients said the notes helped them organize their thoughts. One patient, Jan, called it his "digital diary." It helped him remember what was discussed in past appointments, which was a huge help for those who struggled with concentration or memory. It wasn't just about reading; it was about using the notes to set goals. One patient, Emil, described it as looking at a map of where he had been and where he was going, allowing him to see his progress even when he felt like he was taking two steps forward and one step back.

3. Breaking the "Silent Wall"
Perhaps the most powerful change was in the relationship between the patient and the doctor. For a long time, patients felt a bit like they were sitting in a classroom while the teacher wrote on the board, and they couldn't see what was being written. This created a little bit of anxiety or irritation. "What is he typing?" they wondered.
With open notes, that wall came down. The study found that 12 out of 13 patients felt the doctor was more available. They could send a quick message through the app if they had a question about their medication, rather than waiting weeks for the next appointment. One patient, Claudia, used the comment function to ask about a medication dose, and the doctor adjusted it almost immediately. This turned the relationship from a "doctor tells, patient listens" dynamic into a partnership. Patients felt more equal, more heard, and more trusted.

4. The "Trust" Factor
The researchers found that transparency built trust. When patients could see exactly what the doctor was thinking, the uncertainty vanished. One patient, Georg, noted that in mental health, the doctor's subjective view is crucial, and being able to see that view helped him understand the doctor's thought process. It wasn't just about the words; it was about the feeling of being "seen." Nine out of 13 patients said they felt more validated and cared for because they could see the doctor understood their situation clearly.

5. What Didn't Happen
It's important to note what didn't happen. The study explicitly ruled out the idea that reading the notes caused harm. None of the 13 patients reported that reading the notes made them feel worse, angry, or less trusting. While a couple of patients felt a tiny bit of guilt or sadness at first (reminded of tough times), these feelings faded quickly. No one said, "I wish I hadn't read this." The fears that doctors often have—that patients might get scared or act out—were not supported by this group of patients.

The Bottom Line

This study suggests that for patients with severe mental illnesses who are stable enough to engage, reading their doctors' notes is like turning on the lights in a dark room. It doesn't change the furniture (the illness), but it makes the room feel safer and easier to navigate. It turns a one-way street into a two-way conversation, giving patients a sense of control and a stronger bond with their healthcare team.

The researchers are careful to say that this was a small study with 13 people, so we can't say it's a magic cure-all for everyone. They also noted that their study focused on outpatient clinics, not on people in the middle of a severe crisis or in psychotherapy where the notes might be very different. But for the patients they spoke to, the "Open Notes" experiment was a success. It suggested that when you let patients in on the conversation, they don't just read the notes; they start writing their own story with a little more confidence.