Would it do irreparable damage to a sacrosanct therapeutic relationship by pushing an agenda for openness too far? Or could it move clinician–patient power dynamics towards greater partnership?

These are the questions at the heart of new research exploring the benefits of therapists sharing session notes online with patients. Led by social worker Steve O’Neill, of the Harvard Medical School Centre for Bioethics, researchers used telephone interviews and an online survey of patients to investigate the issue.

"42 million US patients are now using Open Notes."

Harvard teaching hospital the Beth Israel Deaconess Medical Center (BIDMC) used semi-structured interviews with 11 patients who read more than six psychotherapy notes. A further 85 completed an online survey.

Up to 94 percent of those surveyed suggested open therapy notes were a good idea and wanted them to continue. More than half of those surveyed suggested seeing notes was “very important” for feeling in control of care, trusting the therapist and taking care of themselves.

Just two people were offended by a note and seven, or 11 percent, felt judged by something they found. The interview data backed the survey findings.

O’Neill and his team concluded most patients found open therapy notes valuable for feeling engaged in their own mental health care, with minimal side-effects.
The academic feels larger studies are needed to see whether the findings are replicated.

O’Neill’s research builds on the efforts of the Open Notes movement, which is an international campaign based at BIDMC focused on spreading transparency in healthcare.

It’s designed to empower patients, families and carers in healthcare decisions and improve the quality and safety of care. In the US clinical social workers can deal with mental health issues. O’Neill says around 60 percent to 70 percent of psychotherapy in the US is performed by clinical social workers and he started sharing notes 30 years ago.

As part of his work he had to supply documentation to health insurers justifying seeing a patient.

'Automatic policy'

O’Neill, who works as a mental health liaison for Open Notes, decided patients should be aware of this process and started involving them. He also works as a bioethicist at the BIDMC “dealing with very complex clinical ethics situations”.

O’Neill said: “We made it a policy that we would automatically give a copy of our note to both the patient and any involved family member. The “revolutionary” move helped reduce risks because patients and their families valued the openness, said O’Neill.

So, is there any evidence patients get well faster when treated by an Open Notes therapist?

As yet O’Neill says there is not enough research to settle this question.

But he believes anecdotal evidence suggests the Open Notes approach helps “build the therapeutic alliance a little bit faster than we might have thought.”

But doesn’t sharing notes just lead to a sanitised therapy record from clinicians focused on avoiding causing offence? If a therapist feels a patient is in denial about the root of their problems, but believes they are not yet ready to hear this, won’t they simply produce an uncontentious note?

O’Neill admitted this is a real fear among therapists who use a psychodynamic approach focused on revealing the unconscious elements of a patient’s psyche.
But he believes therapists should simply report any difference of opinion within the note.

He told how one of his patients who worked in an environment where corporate spying was common believed all the smoke alarms in his home were bugged with cameras. The patient had his home swept for bugs and O’Neill felt he was delusional.

He added: “So when I write my notes about that I write down what his perspective is, but I write down that I differ in my perspective and I would write down that I believed he was suffering from a delusion.”

O’Neill says as well as the US, the Open Notes movement is growing in Canada and parts of Europe, including Sweden and Denmark. The 67-year-old social worker says there are around 42 million US patients now on Open Notes.

Up to 67 health networks have opened up their mental health notes, including the country’s largest healthcare provider the Veterans Health Administration, which serves nine million former military personnel each year.

But O’Neill said though many US groups have opened up medical notes, there is a resistance to the same transparency on mental health notes.

“Most medical systems don’t want to open up mental health notes because they think patients won’t be able to handle it. My view is that that just reinforces the stigma of mental illness — that patients can’t handle it — when the evidence really is that, actually, most of them can. The vast majority can."

Stacey Whiteman started using Open Notes after being diagnosed with multiple sclerosis (MS) while working as an executive assistant in July 2012.

Whiteman, who also has a history of depression and anxiety, says Open Notes enabled her to keep abreast of how her therapy was going at a time when her mind was too chaotic to follow the progress she was making.

The 57-year-old, from Massachusetts, was using Open Notes to manage her MS and when her therapist suggested taking the same approach to her counselling sessions she jumped at the chance.

She said: “That’s the tool that I know that if I come in here (to the therapy session) and I’m talking in fragments about my issue she (the therapist) is going to be able to pull it all together.

“I know I’m going to get distracted, but I can go home and at the luxury of my own time read my open notes.”

Whiteman, who is a patient adviser at BIDMC, said her problems with stress and anxiety have reduced and she now has a better understanding of her MS.
But UK-based psychologist Leila Collins believes forcing therapists to share private notes could prove counterproductive.

She said: “I am not prepared to share those notes with anybody, including the patient. I’m only prepared to discuss my observation and note with my supervisor.”

Collins, who has worked in counselling for more than 20 years, insists patients are involved in their care in traditional therapeutic relationships where they would not see notes.

“You’re involved with the therapist person-to-person. The most intimate relationship you can have,” she added.

O’Neill’s research was published online by the Journal of Mental Health on July 31.