I was lucky enough to be presenting at and attending the SCOPE Europe conference recently. It started with some fascinating presentations and discussion on wearables and virtual trials. We all know technology is moving fast and some of the potential impacts in clinical trials are phenomenal. There was also a presentation by an extraordinary woman – Victoria Abbott-Fleming. She has started her own charity for sufferers of Complex Regional Pain Syndrome (Burning Nights CRPS) having been diagnosed with this condition. She had found it difficult to obtain information from her health professionals in the NHS. Talking with Victoria and her husband, it was shocking to hear of the daily challenges and prejudices she encounters through insensitive actions and comments due to her being young and confined to a wheelchair. On top of this she has taken an activism role trying to cajole the NHS and government to help get the support she and others like her need.
Victoria was presenting on the challenges patients face to getting on to a clinical trial. And it really makes you wonder how we can improve patient access. Often it is a real challenge to find out about, understand and access clinical trials. Victoria herself has wanted to go on a clinical trial for 15 years but has not managed it – if you’re not being treated by a physician who participates in clinical trials, your opportunities are limited. She has discovered clinical trials but too late to actually participate. When we talk about patient-centred this should be a clear concern. TJ Sharpe also speaks powerfully on this topic from a patient perspective.
Of course, wearables and virtual trials might hold some of the answers to including more patients in clinical trials but you can’t help thinking something is wrong at a basic level if we can’t match up patients desperately wanting to participate in a clinical trial with trials that are actually available.
The charity Victoria founded:
Text: © 2018 Dorricott MPI Ltd. All rights reserved.
Hi Keith,
I have found this post by checking your site (searching for one of the previous posts to share with colleagues) but not via email distribution – would you please have a look into that?
Many thanks,
Oleg.
Hmm. Sorry Oleg. I don’t know why that is. I need to find the root cause…
OK so I found it. The add-on that sends out email notifications to subscribers is designed to be able to send out those notifications to different subscriber lists – depending on the topic. When I write a blog post, I have to assign a topic (can be more than one). If there isn’t an appropriate topic, I can add a new one. But if I don’t then tell the add-on that I want posts with that topic to go to the subscriber list, then it doesn’t send. So from now on, if I add a topic, I need to remember to go back to the add-on and select that new topic to go to the subscriber list. Thanks for alerting me Oleg!