Each year, International Clinical Trials Day is celebrated around the world on or near the 20th May to commemorate the day that James Lind started his famous trial.
Tonight I’ve been a guest of Cancer Research UK at their Imperial Cancer Research UK Centre in West London. The purpose of tonight’s celebration is to launch a series of short films which feature key research programmes currently being undertaken. These films will be displayed in public areas within partner hospitals and for use by the teams on websites and during public and patient involvement events.
As you know I’m passionate about the improvement and advancement of cancer care. I have spent time to try to understand what clinical trials really involve. What is being undertaken and where. Why people should get involved (greater good and personal good). I can’t stress enough that without patient and carer involvement, medical advancements will be slow or in some cases not exist at all!
Clinical trials used to fill me with fear. I thought, as I think many do, that being involved in a clinical trial would mean being injected with drugs, high levels of danger and perhaps ending up like the Elephant Man case or worse.
What my investigations and questions have led me is truly a very different understanding. There is so much more to clinical trials and a great deal of it non-invasive. Participation can be as little as completing surveys or questionnaires during your treatment or whilst caring for someone else. It may be changing your diet slightly. It may be helping with the wording on a funding application from a patient/carer perspective. It might be the occasional blood sample. It may be speaking to researchers about your experience first hand. It may be donating part of a excised tumour. It may be regular scans. It may also be changes to your chemotherapy regimen, radiotherapy frequency or taking new drugs.
However with all patient/carer involvement there is a huge duty of care to ensure you understand your involvement, the level of involvement. Continued support and, if you’re participating in drugs trials, constant access to the clinical and research team.
They can’t do their work without us!
Personally, I’ve authorised for tumour samples from my excised Phyllodes to a tissue bank for a clinical trial relating to Phyllodes. Sadly due to the small number diagnosed the trial remains on hold whilst new samples are slowly collected.
I’ve also authorised for tumour samples from my excised DCIS to be used in a trial. This trial is known as the ICICLE trial and there is a brief explanation from Cancer Research about what it is researching.
As part of the Patient Participation Group at Imperial, I’ve also helped out with the wording of funding applications, trial designs and patient/carer leaflets. I’ve participated in discussions and provided feedback at meetings to researchers and clinicians. I’ve also been fortunate enough to have a tour of the research centre and see exactly where the work is carried out, the scans performed, the ward for inpatients and consultation rooms. Amazing facility. Incredible work.
So I guess it’ll come as no surprise to anyone that I’ve been involved in another project at Imperial. The only surprise is that I’ve put myself in front of a camera – I so hate myself on film! But needs must.
As I mentioned earlier, tonight saw the launch of a number of films. Well yours truly appears in a couple of them! Even more so, I was presented with a lovely gift from the team at Imperial to thank me for my involvement and all that I contribute to the group.
I hope the films make a difference and encourage people to get involved in clinical trials… remember they’re not scary!
Here are a few films that explain what taking part in a clinical trial involves and below there are more specific trial information films.….
Link to films – I may well appear in them so don’t be scared!