When questions about epilepsy arise, families need information they can trust.
Many people now use AI-powered search tools to find health information online. While these tools have the potential to make information easier to access, there are growing concerns about the accuracy of some of the answers they provide.
We have joined more than 50 health organisations in supporting a new report calling for stronger safeguards around AI-generated health information, helping to ensure people can find accurate, evidence-based information and support when they need it.
The report, published by the Patient Information Forum (PIF), Marie Curie and Macmillan Cancer Support, outlines a number of recommendations to improve the safety and reliability of AI-generated health content, including:
- Prioritising verified UK health information sources in search results
- Clear warnings that AI-generated health summaries may not always be accurate
- Better signposting to trusted information and professional healthcare support
- A framework for identifying and verifying trusted health information providers
- Stronger safeguards around the use of AI-generated summaries for health-related searches
Why trusted health information matters
At Young Epilepsy, we believe everyone should be able to access health information they can trust.
Our health information is accredited under the PIF TICK certification scheme, the UK's only independently assessed quality mark for trusted health information. The accreditation recognises organisations that meet high standards for producing evidence-based, accessible and user-focused health information.
Achieving the PIF TICK reflects our commitment to involving children and young people with epilepsy in the development of our health information and making sure the information we provide is accurate, clear and trustworthy.
As health information continues to evolve, we believe the same standards of quality, transparency and accountability should apply to AI-generated health content.
Yinka Ebo, Health Information Manager at Young Epilepsy, said:
"Many families affected by epilepsy turn to online information to help them understand a diagnosis, explore treatment options or make sense of a change in their child's condition.
"AI has the potential to make information easier to access, but when it comes to health, people need to be able to trust what they're reading. Inaccurate or incomplete information can cause confusion at a time when families are looking for clear answers.
"That's why we're supporting these recommendations and calling for greater oversight of AI-generated health information, so people can find reliable, evidence-based information and support when they need it."
Working together for safer health information
We support efforts to ensure emerging technologies help people access high-quality health information without compromising safety or accuracy, and we will continue to advocate for children and young people with epilepsy and their families to have access to information they can trust.
