This report presents the findings of a project delivered by the Patients Association and sponsored by Lilly UK to better understand the experience of patients when purchasing medicines from unregulated online sources, including website and social media. Lilly UK provided sponsorship funding for this project and has had no influence on the project or the development of any materials for this project.

The project aimed to explore why patients turn to unregulated online channels, the role of social media and targeted advertising, the risks patients face, and what public awareness activity could better support people to stay safe. The research involved a desk-based review of existing evidence and two focus groups conducted in August 2025 with patients and carers from across England.

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> Download the report

You can also read the open letter we co-signed with Lilly UK calling for action on unregulated online medicines.

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Key findings

The research identified four key themes shaping patients’ decisions and experiences:

1. Access barriers are the primary driver of unregulated online medicine use.

Patients described long waits for GP and pharmacy appointments, difficulty accessing care, and frustration with an overstretched health system. Many felt they had little choice but to seek medicines online to manage their health needs.

2. Social media and targeted advertising strongly influence patient behaviour.

Participants reported being exposed to persuasive advertisements and influencer content promoting medicines, as well as relying on online support groups for advice. While these spaces offer emotional support, they can also normalise bypassing clinical oversight.

3. Patients understand the risks but often feel forced to accept them.

Unregulated online sources bypass vital safety checks and may supply counterfeit, ineffective or harmful medicines. Although participants were aware of these dangers, many felt compelled to take the risk due to lack of alternatives.

4. Public awareness efforts should inform, not shame.

Participants stressed that patients should not be judged for seeking medicines online, particularly when healthcare access is limited. Instead, campaigns should equip people with clear, practical information to help them stay safe and make informed choices.

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Recommendations

Based on these findings, the report makes four key recommendations:

• Improve patient awareness of the risks of buying medicines from unregulated online sources
• Provide clear guidance on how to identify legitimate and safe online pharmacies
• Design public awareness campaigns in partnership with patients to ensure relevance, clarity and impact
• Address underlying access barriers that push patients towards unsafe alternatives

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Conclusion

The report concludes that the rise in unregulated online medicine purchasing is driven by a combination of healthcare access challenges and powerful online influence. While many patients recognise the risks, they often feel left with no alternative. Tackling this issue requires a coordinated response that improves access to care, strengthens public awareness, and places patient experience at the heart of campaign design.

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Acknowledgements

The Patients Association and Lilly UK would like to thank and acknowledge the patients and carers who participated in the project. We thank them for graciously sharing their time, personal experiences, and insights to help to raise awareness of the dangers of unregulated medicines purchased online, helping to shape a national response that prioritises patient safety, equity of access and informed choice.