An Oregon lawmaker is pushing a bill that would require the state’s newly legal psilocybin therapy services to collect, and share with the state, clients’ personal data. It would be a big departure from the rules that officials put in place in 2022 to govern psilocybin. And advocates reached by Filter expressed concern that the proposed law could undermine psilocybin users’ rights.
Oregon’s Measure 109, approved by voters in November 2020, legalized psilocybin therapy services in a model where people will buy and use the drug in “service centers” under trained supervision from “facilitators.” Following a long implementation period to develop regulations, the state on January 2 began accepting license applications from businesses and individuals that want to provide these services.
A week later, on January 9, state Senator Elizabeth Steiner (D-Portland/Beaverton) introduced Senate Bill 303. This would impose a requirement on service centers and facilitators that they collect demographic and health data on all clients—and then give the data to the Oregon Health Authority (OHA). Questions have been raised about the OHA’s and other parties’ potential involvement in developing the legislation.
Two categories of data would have to be collected under the bill. First, clients’ personal characteristics—including age, gender, race, ethnicity, language, income, residence, education, veteran status and health status—would be recorded. The legislation would not require that a person’s name, birth date or social security numbers be collected.
Second, providers would have to report data on their businesses—how many clients served, why people use their services, who is denied services and why, any adverse events, total costs charged for individual and group sessions, service protocols including dosages given and duration of sessions, and any followup information reported by clients on their outcomes.
A state health agency mandating this kind of data collection would be concerning, experts say, because psilocybin is still federally illegal.
OHA would also collect similar demographic data on everyone to whom it issues a psilocybin license. Then, after compiling all this data from around the state, OHA would be required to remove any personal identifying information, before making the data public—by providing them to the Oregon Health and Science University in Portland. The bill does state that no service center or facilitator could disclose a client’s personal information without their consent—except in certain circumstances, such as if the business is sued or being investigated for wrongdoing or negligence.
Under the current rules, psilocybin service centers may not share any identifying information about a client without their consent. Clients would have to fill out a form that explains exactly who could access that data and for what reason. Even if the business wants to collect “de-identified” data that can’t reveal a client’s identity, the client must still consent to this in writing. They can opt out at any time, and may not be denied services for doing so.
A state health agency mandating this kind of data collection would be concerning, experts say, because psilocybin is still federally illegal as a Schedule I substance.
“That makes the information particularly sensitive and it makes the clients vulnerable to legal as well as social or professional consequences,” Mason Marks, a law professor at Florida State University focused on psychedelic law, told Filter. In an interview with Lucid News, Marks also speculated that if the bill passes, the data collected by the state could be vulnerable to hackers or federal law enforcement, though potential risks are currently unclear.
In November 2022, Marks received emails in response to a public records request. They revealed conversations between Oregon Psilocybin Services (an OHA department), researchers at Oregon Health and Science University (OHSU), and the Healing Advocacy Fund, a psychedelic lobbying group. The discussions show that the OHA encouraged OHSU researchers and the Healing Advocacy Fund to develop legislation together to change Oregon law to require collection of psilocybin client data, and offered its support in analyzing and reviewing any proposal. Marks also noted that Sen. Steiner is employed by the university, raising the question of a potential conflict of interest.
Because Oregon’s psilocybin services are not technically categorized as health care—and again, are federally illegal—clients will not be protected by the Health Insurance Portability and Accountability Act (HIPPA), a federal law which prohibits doctors and hospitals from disclosing a patient’s personal information without their consent. That’s why the state’s psilocybin law currently offers such strong protections to clients who pay for services.
“Suppose that HIPPA did apply, what they’re proposing here would likely be a HIPAA violation,” Marks said. “Because HIPAA does allow health agencies to collect limited amounts of data from patients. But HIPAA restricts that to the minimum amount necessary to achieve a specific public health purpose. [This is] the opposite of that, it’s like a shotgun approach. They just want to collect as much data as they possibly can.”
All of this reflects the challenges of setting up ethical standards in this first-in-the-nation psychedelic therapy model. As Oregon launches psilocybin services, with Colorado now soon to follow, people have a right to ask certain questions: Is this safe? Is it effective for people with mental health diagnoses or substance use disorder? Is it affordable? Is it accessible regardless of race and other personal characterisitics? And collecting reliable, high-quality data would be an obvious way to help answer these questions.
“Accurate information about who has access to Oregon’s psilocybin therapy program is critical to the program’s success,” Sam Chapman, executive director of the Healing Advocacy Fund, told Filter. “If we operate this program in a vacuum, without accurate information, there will be barriers to access that we cannot ever address … If we do not establish a mechanism for collecting this aggregate information, we will not be able to address these kinds of challenges, and the program will be fundamentally inequitable.”
“It is not clear to me why the government should collect or manage this data,”
“I don’t think that no data collection is the right move,” Hadas Alterman, government affairs director for the American Psychedelic Practitioners Association, told Filter. “If there is a way to make it work, to make the data meaningful and valuable without making it mandatory, that would be ideal.”
However, “it is not clear to me why the government should collect or manage this data,” she continued. “I don’t think they’re necessarily the best-equipped to do it or the most reliable… if data is going to be collected, it should not be compelled. It should be presented as as a choice in a way that is compelling to clients, that explains the risks and benefits.”
Todd Korthuis, MD, professor of medicine at OHSU, the university which would be receiving client data under SB 303, also spoke out against the bill. Korthius was named by Marks as involved in the email exchange with Oregon Psilocybin Services. He’s also a member of the Oregon Psilocybin Evaluation Nexus (OPEN), on whose behalf he has pitched Oregon Psilocybin Services for funding.
“[We] were not consulted in drafting this legislation,” Korthuis told Filter. “We were surprised to see the draft bill ‘require’ data reporting. We have a long record of public comments supporting voluntary collection of information to understand the impact of community-based services.”
“We have publicly and repeatedly supported current Oregon Health Authority rules that allow for, but do not require data reporting,” Korthuis continued. “We continue to reject mandatory data reporting. Any core measures for voluntary reporting need to come from community facilitators and other stakeholders with deep experience, rather than legislation.”
Photograph by TherapeuticShroom via Pixabay
Update, January 27: This article has been edited to clarify the quotes from Hadas Alterman.
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