Is more better? How new information sharing rules will affect mental health providers

The COVID-19 pandemic — which disrupted lives and created numerous scenarios in which people feel isolated during quarantine or stay-at-home periods — has “created a landslide of mental health needs,” according to Mark Davis, chief executive officer, Wasatch Pediatrics.1

Whereas only 20% of adults in the United States reported often or always feeling lonely or socially isolated, an NIHCM Foundation poll from August 2020 showed that 28% of adults reported feeling lonely and 41% reported feeling socially isolated. These factors can be damaging to physical health and increase a person’s risk of premature death from all causes.2

The surge in demand has many pediatricians, traditionally focused on growth and development, instead feeling more like psychiatrists as physicians encounter these new mental health needs, Davis added.

The long view on mental health post-COVID-19: The age of information sharing begins

While the United States continues to face an uphill battle in containing the spread of coronavirus while also attempting to rapidly immunize the highest-priority groups of the population with newly authorized vaccines, mental and behavioral health needs will continue as states and local governments continue various levels of lockdown.

As providers address these needs throughout 2021, they will face a key change in terms of health IT capabilities and compliance on April 5, when the information sharing rule — which emerged from the 21st Century Cures Act passed in 2016 — goes into effect after being delayed from its initial Nov. 2, 2020, deadline. This rule mandates that patients can access their test results, medication lists, referral information and clinical notes rapidly and conveniently through EHRs.

• Member tool: Access the MGMA member-exclusive resource, the Information Blocking Toolkit for Medical Groups, for in-depth analysis of the new rule that took effect April 5: mgma.com/infoblocking.
  
  

Liz Salmi, senior strategist of research dissemination for OpenNotes, noted that while almost all types of clinical notes must be available for sharing with patients, there are some exceptions, such as if a clinician believes that blocking such information from a patient substantially reduces the risk of harm to a patient or another person.

That scenario may be particularly concerning for mental healthcare providers, in which sensitive information about a patient is part of the records that would be accessible to patients once the information sharing rule is active.

Handling sensitive information: Lessons from the VA system

Steven K. Dobscha, MD, professor of psychiatry for the Oregon Health & Science University School of Medicine and director of the Center to Improve Veteran Involvement in Care (CIVIC) for the U.S. Department of Veterans Affairs (VA), understands that scenario based upon experience with an open note system for the VA’s electronic health portal (My HealtheVet).

In 2013, authenticated users of My HealtheVet received access to their progress notes without any provision to block notes, including mental health notes, Dobscha said. “About two and a half million VA users have now either viewed or downloaded their notes through the blue button that’s available in My HealtheVet,” Dobscha added.

Despite numerous studies that have shown strengthened relationships between providers and patients and better medication adherence when patients used an OpenNotes-style system, Dobscha cautioned that mental health notes inherently have sensitive information, such as documentation of trauma.

“There may be certain diagnoses that carry stigma and that clinicians are often uncomfortable talking to their patients about, such as personality disorders,” Dobscha said. “People may have concerns about the risk for violent behaviors. There's questions about what do you do when a patient has delusions and may be in the office for a different reason than you think they're in the office.”

There’s also concern about private information about other individuals who are close to the patient, as well as the accessibility of notes by an authorized family member or guardian of the patient.

Studies in the 1970s through the 1990s in inpatient settings generally found that patients with mental health conditions reported better understanding of their problems when they could review paper mental health notes, yet the same concerns about seeing what could be upsetting or stigmatizing language “sometimes caused some upset or created more pessimism,” Dobscha said.

In a VA-funded study, Dobscha’s team worked to understand veteran and clinician perspectives and experiences with OpenNotes-style mental healthcare records to develop and evaluate web-based courses for clinicians and veterans, specifically designed “to minimize unintended negative consequences” of patient-accessible notes and “potentially optimize collaboration and communication.”3

Several themes emerged among more than two dozen veterans interviewed and a subsequent survey of hundreds of veterans:

• Trust was very critical to the therapeutic relationship in general, and most associated reading their notes to either a strengthened or strained level of trust in their clinician(s). “When you have a newer patient, when that relationship is a little less clear, it seems like reading notes was important,” Dobscha said.
• Most veterans were very supportive of mental health notes being available online, and most felt that the notes accurately described what happened in their appointments. Some noted that it was important to see some information about what happened in a given session, as opposed to notes that seem like boilerplate or cut-and-paste additions from other sessions.
• Less than 10% of veterans said that reading their notes often or always caused stress or worry, and 26% reported that they were sometimes upset or worried about what was in their notes.

On the clinician side, qualitative interviews with 28 clinicians revealed concern about patients negatively misinterpreting notations or feeling judged or stigmatized. One clinician was quoted, “There's lots of technical information that's included in notes that can be scary or off putting or confusing without context, or someone to help explain it.”

Clinicians also expressed strong desires to protect patients from harms that might result from reading notes, and some clinicians felt that the notes had potential to undo the work that they've been putting into developing a therapeutic relationship. On the other hand, Dobscha noted some clinicians “felt that, despite their discomfort, open notes probably helps keep them accountable, ultimately resulting in improved care documentation.”

In quantitative surveys of clinicians from 2015:

• About 40% were worried patients would be confused or might disagree with or find errors in notes. About one-third expressed concern about patients worrying after reading notes.
• On the other hand, about 41% were very to extremely supportive of providing the notes in general, and about 30% felt that mental health notes should be available to patients online.
• Less than 20% reported that they had seen a negative consequence of open notes with one of their patients, and most often it had to do with the patient being upset or disagreeing with a diagnosis.
• Dobscha added that these patients may be especially concerned about their notes, as VA medical records are used to make disability determination decisions, which have direct compensation and insurance effects on veterans.

While the VA study found promising results from use of open notes, Dobscha cautioned that patients with PTSD were more likely to report negative emotional responses to their notes, though this group was twice as likely to read their notes than other patient cohorts.

“Most clinicians kind of like the idea” of open mental health notes, Dobscha said, “but they worry about particular relationships, particular circumstances where they may not want to share notes.”

Dobscha’s advice for clinicians concerned about what goes into the note is to openly discuss with the patient what is being documented and the reasoning, ensuring there are no surprises. Depending on the situation, it may be useful to ask a patient about his or her preferences for how much detail to include in a note.

Ultimately, Dobscha’s experience with the study led him to believe that the instances of blocking access to a mental health note should be rare.

Other findings

A similar pilot study, co-led by Stephen O’Neill, LICSW, BCD, JD, mental health liaison for OpenNotes and faculty at the Center for Bioethics at Harvard Medical School, examined patients’ attitudes and experiences reading their psychotherapists’ notes online, with generally positive results.1

O’Neill, who previously was the social work manager for most of the behavioral health practices at Beth Israel Deaconess Medical Center, started the first program in making behavioral health therapist notes readily available to patients via computer in 2014.

O’Neill considers open mental health notes as another means to form a partnership with patients. “If you think about our current culture, with the pandemic going on” and the Jan. 6 insurrection in Washington, D.C., “trust is a huge issue for our entire culture,” O’Neill said. “If we can do anything to increase the trust that patients feel for us providers, I think that’s a good thing. That’s a little of what open notes is about: [Increasing] that culture of transparency and respect.”

In O’Neill’s study, the rollout of open mental notes began with the psychiatry department testing with 10 patients per provider, and then expanding to the social work department in which providers fully opted into open notes for all patient panels. Since then, all outpatient and ambulatory therapists expanded to open mental notes.

Some staff in O’Neill’s study expressed concern over the sense of pressure to get notes completed. “Some of my more delinquent staff became much better at getting their notes done in a timely fashion,” O’Neill noted. Many staff also worried about rephrasing notes to avoid patients being angry about certain items, but ultimately the major issue was explaining to patients why the notes look a certain way, such as the incorporation of a mental status exam on every note.

Overall, O’Neill’s study found patients were pleased and took interest in reading their notes, and it echoed VA study findings on the benefit of patients who are just beginning therapy connecting a session to what’s written in the note.

Some patients who accessed their notes would share them with family members, and some posted them inside their homes, “to see and remind them of what they’re supposed to be working on,” O’Neill said. “It’s become a real nice tool to complement the therapeutic work.”

O’Neill warned that attempts to block these notes from patients might “unwittingly” stigmatize the patients, “by saying they can’t handle it, when, in fact, the data shows they care.”

21st Century Cures Act implications for open mental health notes
O’Neill said that the general sense around the provisions for blocking information to patients is that providers are not supposed to exclude “groups of patients, per se, but you can exclude patients on a case-by-case basis.”

For example, providers would not exclude all psychiatric patients from accessing open notes, but certain patients could be excluded if the clinician believed it would reduce harm.

What constitutes harm? An FAQ from the Office of the National Coordinator (ONC) for Health Information Technology spells out that the Preventing Harm Exception means that what is required for a practice to invoke the exception is “a reasonable belief” that limiting the patient’s “access exchange or use of their own [electronic health information]” would “substantially reduce a risk to life or physical safety of the patient or another person.”* Among O’Neill and other practice leaders, there remains some uncertainty as to whether such “harm” includes only physical harm or also emotional distress that could lead to physical harm.

• For more information, access the information blocking FAQs from the ONC.

One anecdotal example O’Neill provided was using open mental health notes with rape trauma patients. Reading those notes “recapitulates the experience and [can] retraumatize them in a way,” O’Neill said, so preparing patients for those situations may be necessary before a patient chooses to read the notes.

O’Neill stressed that mental health providers should understand the capabilities of a practice or organization’s information management to determine what types of limiting abilities are available if a need arose. However, O’Neill and Dobscha had positive experiences in their respective studies of offering open mental health notes to patients, and that the benefits in building provider-patient relationships and improving patients’ understanding of their issues outweighed the limited instances in which patients would be upset by reading the notes.

Dobscha added that even among the patients who reported some upset from the notes, they still wanted to keep seeing the notes.

Notes:

1. MGMA. “Addressing the mental health toll the pandemic has had on healthcare workers and everyone else.” Insights podcast. Dec. 23, 2020. Available from: MGMA Podcast.
2. NIHCM Foundation. “Addressing Loneliness & Social Isolation During the Pandemic.” Available from: bit.ly/39OQI3U.
3. Dobscha SK, Denneson LM, Jacobson LE, Williams HB, Cromer R, Woods S. “VA mental health clinician experiences and attitudes toward OpenNotes.” Gen Hosp Psychiatry. Jan-Feb. 2016; 38: 89-93. doi:10.1016/j.genhosppsych.2015.08.001.
4. O'Neill S, Chimowitz H, Leveille S., et al. “Embracing the new age of transparency: mental health patients reading their psychotherapy notes online.” Journal of Mental Health, July 2019 doi: 10.1080/09638237.2019.1644490.