Here is a guest post I wrote earlier this year for METAvivor called “How Do People Feel about Bone Marrow Exams?” It was based on a study with Bonnie King from Stanford. While this may be one of the more gruesome-sounding medical procedures that some patients go through, it is not necessarily unique.
Too often, researchers think about all of the cool data they can collect during a clinical trial or research study, without thinking about what is would be like to experience all of those test procedures. Well, patients think about it, and often wonder what is wrong with the researchers!
I’m always perplexed when I hear about “adherence” issues in clinical trials. It used to be called “compliance” but that wasn’t as accurate, and brought up more negative connotations for the research community.
The fact is, for patients, endurance is the best term.
– Deborah Collyar
Staying in a clinical trial, or on any prolonged treatment plan, is an endurance test. There are many unpleasant, and sometimes risky, things that you have to do but hopefully you will get something out of it at the end. Patients hope for positive responses to treatment, or even remission, but that is not always possible.
This is one of many reasons why it is important for those of us who represent patients to be involved in research discussions, from conceptual design to trial completion. We ask questions, such as, “Why do you need x number of these tests? Are they absolutely necessary to answer the questions in this study? What else could be done? Have you thought about asking the patient?”
Let’s work together to make the experience of participating in clinical trials as smooth as possible. Trial participants contribute so much already – they deserve to respect and consideration when we ask them to do things for research.
I posted “Informed about Changes to Research Consents?” on 11/15/15. You now have until 1/6/2016 at 11:58pm EST to send your comments about the changes that will affect hundreds of thousands of patients, researchers and institutions (at least). PLEASE send in your comments!
- Read my blog post on 11/15/15 to refresh yourself, and feel free to use any part for your comments.
- Look at the summary of changes, according to the US Office of Human Research Protections (OHRP).
- Read some of the public comments that have already been posted (so far, there are 957 comments). Here is an example of one of them from the Genetic Alliance – feel free to use any part for your comments.
- Click if you want Tips for Submitting Comments (go to bottom of page and click on .pdf file).
- Post YOUR Comments at this link!
- Feel free to share your comments below on this post if you want to discuss them.
I’m finishing my comments now and will post them… but don’t hold your breath – create your own comments NOW! GO FOR IT!
It certainly made my week when CT Arena asked me to write a guest post on returning research results to trial participants. It’s the small victories that keep you going, you know?
Creating plain language study result summaries for people is becoming popular these days, thanks to a recent regulation from the European Medicines Agency (EMA). The EMA is similar to the U.S. Food & Drug Administration (FDA). Clinical trial summaries can help patients make better decisions, and show respect to trial participants.
It’s strange to become one of the world’s experts in this field – it’s one of many interests! You can link to the article here. And feel free to contact me for more information – happy to help!
All content © 2015 by Deborah Collyar unless otherwise specified. All rights reserved. Permission is granted to use short quotes provided a link back to this page and proper attribution is given to me as the original author.