Lifetime Citizen Portal Access — AI Briefings, Alerts & Unlimited Follows
Work group advances patient-centered COSHI consent framework emphasizing accessibility, readability and actionability
Loading...
Summary
A work group convened by the eHealth Commission reviewed an AI-assisted prototype consent form for COSHI and discussed standards to make consent understandable and actionable for people with limited literacy, limited internet access and those in correctional settings; members agreed to circulate the draft for feedback.
A stakeholder work group convened under the eHealth Commission discussed a proposed consent framework for COSHI that centers on three standards—accessibility, readability and actionability—and reviewed an AI-generated prototype consent form that the meeting lead said they will circulate for feedback.
The lead presenter described using public health information exchange standards and two or three existing consent forms, then running that material through a generative AI tool (Claude) to produce a draft aimed at a sixth-grade reading level. "It actually spit out a very elegant sixth grade reading level COSHI consent form that I would love to share with the group," the presenter said. The prototype, the presenter cautioned, is a brainstorming draft, not a final template.
Why it matters: participants said current consent forms are often dense with legal jargon and impose a burden on patients who must sign multiple, siloed releases across providers. The group focused on making the consent comprehensible to people with low literacy, non-English speakers and people without reliable internet access so that consent is meaningful rather than perfunctory.
Key proposals and concerns
- Accessibility: Participants recommended meeting digital accessibility standards (WCAG), offering a parallel paper workflow, and providing multiple ways to access the consent (in-person, QR code or text link to a portal). A technical team member proposed a consent-management portal that can generate machine-readable records and recreate paper forms for re-ingestion into the system.
- Readability and education: The group recommended a patient-facing reading level around sixth to seventh grade for consent language (and noted that patient instructions typically target third-grade reading level). Members suggested pairing the consent with short explanatory videos and bilingual infographics to help patients understand concepts such as what COSHI is and what data types (including sensitive categories) are being requested.
- Actionability and transparency: Participants asked that the system make clear what actions result from consenting or opting out (for example, services may still be available but could take longer) and to provide an audit view showing who accessed a person’s information and what was viewed to build trust.
- Sensitive data and legal limits: Members noted that certain categories of information, notably substance use disorder records governed by federal rules, require special handling. The discussion referenced protections under 42 CFR Part 2 for certain substance-use records and agreed that role-based access controls and data-use agreements should prevent organizations without clearance from seeing restricted content.
- Corrections and secondary disclosure risks: Representatives working with justice-involved populations warned that people in jails or rural areas may lack internet access or feel pressure to sign forms. They also flagged a secondary-disclosure risk: showing the source of a record (for example, a county jail) can itself reveal criminal-justice involvement. The team said it is considering ways to mask or otherwise manage source metadata to reduce that risk.
Quotes from the meeting
"You can choose which information you can share," the lead presenter said when outlining the prototype’s granular opt-in model. "Can I change my mind later? And the most important thing is how do I opt out?"
A participant working in criminal-justice settings cautioned, "In our correctional settings...this doesn't always lend itself to lengthy educational experiences," stressing the need for concise, accessible alternatives to long videos.
Next steps
The presenter said the prototype consent form and supporting materials will be circulated to the group for review and iterative piloting. Participants asked for examples from other pilots and for stakeholder testing with low-literacy and justice-involved populations before wide adoption. No formal votes or policy adoptions occurred; the meeting closed with an agreement to continue refining the framework and prototype.
Attribution note: Quotations and descriptions are drawn directly from the meeting transcript and are attributed to the transcript speaker labels (e.g., "Speaker 1"). The work group did not record a formal motion or vote during this session.
