Data shows the most intense AI distrust is softening. The breadth of skepticism has not changed.
PENSACOLA, FL, UNITED STATES, April 28, 2026 /EINPresswire.com/ — Bionews today released the Q1 2026 Rare Trust in AI Index, the second quarterly wave of its proprietary index tracking how rare disease patients evaluate AI-generated health information against human-authored sources. Across 617 respondents in five Bionews communities, every measured AI use case rose quarter over quarter while the central trust score stayed in negative territory.
The Q1 trust score moved from a Q4 2025 baseline of -0.84 to -0.76 on a -2.0 to +2.0 scale, a +9.4% directional shift concentrated at the edges of the distribution. The share of patients who trust AI “much less” than human sources fell from 38.2% to 34.7%, and the share reporting “about the same” rose from 21.3% to 24.8%. The shares reporting they trust AI more stayed flat. The breadth of distrust is steady. The intensity has softened.
Adoption moved in the opposite direction. Among the 321 Q1 respondents reporting AI use (up from 215 in Q4), every one of 10 measured use cases grew. Understanding lab or test results rose from 37.7% to 47.0% and remains the top category. Finding the best doctor posted the fastest quarter-over-quarter increase, from 12.1% to 22.4%, an 85.5% rise. 35.8% of respondents have never used generative AI at all, which holds as the single largest response category and defines the adoption floor for any AI-forward rare disease strategy in 2026.
“AI has opened a door for rare disease patients that was closed for too long, and that matters,” said Marcella Debidda, PhD, President of Patient Insights & Clinical Solutions at Bionews. “People who spent years without answers now have a tool that responds in real time. But access has moved faster than literacy. We haven’t taught people how to tell the difference between an answer that sounds right and an answer that is right. Innaccurate or hallucinated research has found its way into AI responses before. The work ahead isn’t about slowing AI down. It’s about teaching people how to read it.”
Open-ended responses from 343 patients were coded into seven themes. Only 6% cite explicit anti-AI sentiment as a reason to return to human-authored sources. The dominant reasons are personal relevance and disease-specific content- in other words, rare disease patients feel AI is averaging them into something they are not (35%) and information reliability and quality (29%). Patients are not rejecting AI on principle; they are routing their AI trust through the editorial relationships they already have, so the real gap is not in technology, it all comes back to relationships.
In patients’ own words
The usage-trust gap reads most directly in Q1 open-ended responses. Across the five rare disease communities surveyed, patient language maps to the structural findings.
Using AI:
“I use AI to prepare questions for my doctor, but I would never use it to replace one.” — Pulmonary Fibrosis News community respondent
Trust transfers through a trusted editorial source:
“At this point, I’ll choose AI if MGN [Myasthenia Gravis News] uses it, because I trust MGN.” — Myasthenia Gravis News community respondent
The hallucination risk:
“I have seen AI confidently cite studies that do not exist. With a rare disease, that kind of error can be dangerous.” — Muscular Dystrophy News Today community respondent
General-purpose AI data coverage is thin for rare conditions:
“My disease is too rare for AI to have enough good data. I worry it is averaging me into something I am not.” — Scleroderma News community respondent
What AI cannot replicate:
“AI cannot comfort me. Because AI does not have Sickle Cell Disease.” — Sickle Cell Disease News community respondent
The Q1 2026 wave fielded February 18, 2026, across Myasthenia Gravis News, Muscular Dystrophy News Today, Pulmonary Fibrosis News, Sickle Cell Disease News, and Scleroderma News. Total Index respondents reached 1,089, and In Q1, 617 completed the core trust question, 321 reporting use-case data, and 343 providing valid open-ended responses.
Full methodology, community-level findings, open-ended response themes, and registration for the Clinical Mindset Briefing on April 29, 2026 are available at rare-trust-ai-index.bionews.com.
About Bionews
Bionews is a rare disease intelligence and engagement platform connecting the patients, clinicians, and industry working in rare disease. Built on more than a decade of reporting and one of the largest communities in rare disease, Bionews translates lived experience and clinical insight into evidence the field can act on, informing decisions across research, treatment, and access. Its work spans editorial, original research, and direct community engagement across 50+ rare conditions.
Ethan Ash
Bionews, inc.
email us here
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