I once wrote an article for a local rag bemoaning the state of the town’s railway station. When, two days later, the council announced plans for its complete redevelopment I expressed my shame and guilt to a friend for not having known this.
“Simon,” he said after a long pause, “it sounds like a simple case of the power of the press.”
In a similar spirit I can tell you that, on Monday, I chaired the first meeting of the new UK Clinical Trials Gateway (UKCTG) Project Board. Then, overnight yesterday, UKCTG underwent a face-lift!
The ‘Gateway’ is the website and downloadable ‘app’ that the UK Government launched as part of its Life Sciences Strategy in November 2011 to help patients and carers access easy-to-use information about clinical trials. In January this year NIHR published a report of public feedback on the site showing that 88% of people would recommend it to a friend. They also identified a number of important improvements they would like to see including being able to find out about trials recruiting in their local area.
From today that’s possible.
You can now search by condition on the ‘Gateway’ and it will provide you a list of clinical trials and their location(s) together with an easily navigable ‘Google Map’ so that you can see what is close to you where you live. You can also filter your search results so it shows only those clinical trials that are recruiting participants (as opposed to all relevant trials including those that have closed). And the site has generally been cleaned-up so it has a simpler home page and information is presented more clearly.
The same changes will appear on the mobile/tablet ‘app’ version in January I suspect.
Because the Gateway pulls data from a variety of different databases where trials are registered – and the information provided at registration by researchers is not always accurate or comprehensive – what you can access via the Gateway is not full-proof by any stretch of the imagination. So, for instance, it might be that not all the sites (usually hospitals) recruiting for a trial will be shown. Best thing to do if you have got a question which isn’t answered on the UKCTG site is to contact one of the sites listed for the trial you are interested in and talk to your doctor of course.
People will also rightly point out that there are other sites which provide similar ‘local’ information. But I am reminded of the response of the heavy rock musician who was being goaded by a journalist to slag off a boy band: ‘There’s room for everyone,’ he said.
Fact is it’s a start, even if the starting point feels like we are doing the never-ending and proverbial paint job on the Forth Bridge by beginning in the middle rather than at one end of the structure.
Anyway, feels good to be able to finish the year with the ‘Gateway’ having responded to a priority clearly expressed by patients and the public as well as researchers. I am looking forward to the Board supporting more improvements and setting a clear vision for the Gateway over the course of 2014.
Enjoy.
Filed under: clinical research, clinical trial costs, clinical trials, patient participation in research, patient recruitment into trials, PatientLikeMe, public engagement, UK Clinical Trials Gateway, UKCTG Tagged: AllTrials, clinical research, clinical studies, Clinical trial, clinical trials, ClinicalResearch.com, Healthunlocked, NIHR, patient participation in research, patient recruitment into trials, PatientsLikeMe, TrialReach, UK Clinical Trials Gateway, UKCTG, Yourtreatmentchoices
