So sorry for the silence! I’ve been working on many topics and issues, and you will hear about them soon. I also forgot to share this guest blog post I did back in March 2017.
The Clinical Trials Arena post, Trial Results Create a Win for Patients and Companies, covers the reasons trial summaries need to make sense to real people. Health literacy is different from reading literacy and frankly, even people with MDs and PhDs (& other alphabet parts) behind their names have trouble understanding complex clinical trial information!
This post was an update to some my other posts, including:
- Time to Comment on EU Clinical Trial Result Summaries
- Patients Want Results. Share Data. Plain & Simple.
- Clinical Trial Patient Summaries Win!
- Time to share research results with Real People
Since that time, the European Medicines Agency (EMA) has finalized their Summaries of Clinical Trial Results for Laypersons recommendations. Unfortunately, there is still no final date on when public summaries must be posted on their website – it’s beginning to look like early 2019.
An article called Layperson Summary in the EU explains some of the history involved. By the way, PLEEEZ do NOT use the term “layperson” when referring to public research summaries! It is a ghastly term to use when you want to engage patients, and the Webster dictionary does not include “non-scientist” in any of its 14 definitions for the word “lay.” Truly, it sets up an elitist barrier that absolutely negates the intent of this initiative.
I am also now helping Health Literacy Media (HLM) develop their services for clinical trial sponsors. More on that soon – a new website is coming and will be announced!
Watch for updates about this and other initiatives related to sharing clinical trial results with patients and the public. It’s high time, and we’re all learning how to do this together!