Clinical trials are one of those things that no one really cares about until you need to. In the UK we have a pretty impressive cancer trial landscape that’s recognised as being in the top tier in the world. It’s also something which patients and the general public are proud of and keen to support; just think of all of the marathons, dances, cake sales and other activities over the course of a year that people do for charities to fund research. We’re all of the same belief that research is what will one day enable us to live a very long time with, or hopefully without, cancer.
I’ve written before about the complex landscape for patients accessing clinical trial information. It’s pretty grim and hasn’t improved in the two years I’ve been producing METUPUK’s own listing of MBC clinical trials. I inherited the task from Beth, who had died of MBC, which you can read about here in the blog Dear Beth.
Each month METUPUK checks various trial listings to update and compile our own. Most listings, like Cancer Research UK, require reading through all breast cancer or all secondary trials to find the ones that are relevant for MBC. We do this so that patients can be part of the conversation with clinicians about trials earlier in treatment. Patients can and should be a massive part of the trial searching landscape because surprise, surprise, oncologists don’t have unlimited amounts of time to sit looking for the very best trials for each and everyone of their patients.
Be Part of Research is signposted and promoted as THE patient route for trial information and yet we have been reporting the error of their clinical trial listing for well over a year. And the problem isn’t just for MBC. It is the same for ALL metastatic/secondary cancers.
The problem: If you type the search term secondary breast cancer or secondary AN Other cancer you will not get the results of the trials and therefore, as a patient, you will not find the trials that are available to you. There are two examples below to highlight this:
I’m going to spell this out really clearly. If a patient uses the term ‘Secondary’ to search for clinical trials for their cancer they will find minimal listings (two in the example in the image). Users have to use the term ‘Metastatic’ to find the trial listings in the database. How many hundreds or thousands of patients each year think there are no trials for them?
We don’t want to make our own listing and take no pleasure in doing someone else’s job for free. This year our BCAM campaign focusses around the topic of Who Really Cares? And I’m sorry to say, I feel this way every month when compiling the latest updates. We have tried so many communication routes to try and get those involved in trial listings to get it right. My patience for patient trial information is zero. So if you are reading this and you do really care, please can you share this on social media and tag in Be Part of Research so that we can all create a storm to get things done properly once and for all. Department of Health and Social Care funds Be Part of Research alongside the National Institute for Health and Care Research.
Do they really care?
Let’s see.
Kat Southwell