Uppsala Reports Long Reads – Empowering patients as partners

Drug Safety Matters

A patient's perspective can ensure safe medical care and lead to new insights that traditional research may overlook. But how do we best harness that perspective to improve patient outcomes?
This episode is part of the Uppsala Reports Long Reads series – the most topical stories from UMC’s pharmacovigilance news site, brought to you in audio format. Find the original article here.
After the read, we speak to Manal Younus, who authored the article, to learn more about patient engagement and its benefits for medicines safety.
Tune in to find out:

• How regulators and healthcare professionals can effectively engage patients
• How patients can get involved in drug safety monitoring
• What the pharmacovigilance community learned from the valproate case

Want to know more?

In 2022, the Council for International Organizations of Medical Sciences (CIOMS) published a comprehensive report on patient involvement in the development, regulation and safe use of medicines. They also recorded a webinar to summarise the report’s main conclusions.
The International Society of Pharmacovigilance (ISoP) runs a patient engagement group to advance patient involvement in the safety monitoring of medicines.
The Valproate toolkit, developed by the UK’s Medicines and Healthcare Products Regulatory Agency (MHRA), supports healthcare professionals in advising women of childbearing age about the risks and benefits of valproate therapy.
PatientsLikeMe is a digital platform where patients can share personal health stories, connect to peers, and learn about different conditions and treatments.
For more on patient engagement and communication, check out these episodes from the Drug Safety Matters archive:

• Why we should listen to patients
• The challenge of rare diseases
• How to talk about risks

Finally, don’t forget to ­subscribe to the monthly Uppsala Reports newsletter for free regular updates from the world of pharmacovigilance.

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Chapter

1. Uppsala Reports Long Reads – Empowering patients as partners (00:00:00)

2. Intro (00:00:09)

3. Article read (00:01:27)

4. Welcome, Manal! (00:08:50)

5. History of patient engagement (00:10:11)

6. Benefits for drug safety monitoring (00:12:56)

7. Lessons from valproate (00:16:25)

8. Overcoming obstacles (00:20:10)

9. First steps (00:25:08)

10. How to talk to patients (00:29:48)

11. Patient and Consumers Working Party (00:34:17)

12. Beyond the European Union (00:36:18)

13. Starting the conversation (00:38:26)

14. Outro (00:41:19)