(with thanks to Thomas Krichel and bims-librar)
Citation, abstract and comment from me.
CITATION: Why health information remains hard to read: The curse of knowledge as a structural barrier to patient education materials.
Tsuyoshi Okuhara, Emi Furukawa, Hiroko Okada.
Patient Educ Couns. 2026 May 02. pii: S0738-3991(26)00206-5. [Epub ahead of print]149 109673
https://doi.org/10.1016/j.pec.2026.109673
ABSTRACT
OBJECTIVE: Despite extensive guidelines, the readability of health information remains poor. This study addresses a persistent explanatory gap by shifting the focus from recipient-side limitations to producer-side cognitive frameworks, specifically the "curse of knowledge."
METHODS: Using a critical interpretive synthesis and inference to the best explanation, we reexamined recurring patterns of low readability identified in the existing literature (e.g., use of jargon, abstract statistics, and insufficient procedural context). We then comparatively assessed the explanatory scope of the curse of knowledge relative to traditional frameworks such as health literacy and the information deficit model.
RESULTS: Existing frameworks explain why patients struggle to understand health information but provide limited insight into why experts consistently produce complex and inaccessible content. Our analysis suggests that the curse of knowledge-experts' structurally constrained inability to simulate a pre-knowledge state-operates as a central, generative mechanism alongside institutional and normative factors underlying this persistence. This manifests in the misattribution of obviousness to specialist terminology and concepts and the invisibility of tacit knowledge in procedural guidance. We also identify a paradox whereby experts, motivated by professional responsibility for accuracy, accumulate information and inadvertently increase recipients' cognitive load.
CONCLUSION: Persistent limited readability of health information is not merely a technical or stylistic failure but a structural phenomenon rooted in the cognitive constraints of expertise. Therefore, readability challenges should be repositioned from individual efforts to the design of organizational information production systems.
PRACTICE IMPLICATIONS: Improving readability requires a systemic redesign rather than isolated linguistic adjustments. Key strategies include: (1) institutionalizing patient and public involvement (PPI) as an external cognitive audit that surfaces experts' implicit assumptions, (2) implementing standardized templates for numerical and procedural information to reduce reliance on individual expert judgment, and (3) leveraging AI as a cognitive bridge to retranslate specialized knowledge into lay-accessible frameworks.
Keywords: Curse of knowledge; Health literacy; Information deficit model; Organizational health literacy; Patient and public involvement; Readability
COMMENT (NPW):
"(1) institutionalizing patient and public involvement (PPI) as an external cognitive audit that surfaces experts' implicit assumptions" Ironically this could be made more understandable. Are we simply saying that organisations should ensure that their outputs are readable, perhaps by regular testing by patients/the general public? How practical is this and are there alternatives for organisations without the required resources? For example, can AI help determine outputs are readable?
"(2) implementing standardized templates for numerical and procedural information to reduce reliance on individual expert judgment" I'm not sure about templates, but simple guidance would be helpful. IN the UK, our colleagues at Patient Information Forum provide such guidance.
"(3) leveraging AI as a cognitive bridge to retranslate specialized knowledge into lay-accessible frameworks" Is this suggesting that AI could be used to develop readable content from hard-to-understand technical content? Using AI in this way has potential disadvantages such as introduction of error and the risk of producing generic, robotic content.
I look forward to your comments: hifa@hifaforums.org
Best wishes, Neil
HIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org