Uppsala Reports Long Reads – Empowering patients as partners

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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