'All of our work is about focusing on patient-centricity...and this makes our trials run very, very smoothly. ' For Oliver Timmis, CEO of patient group AKU Society, treating patients as partners isn't simply a box ticking exercise - it is the key to successful research.
Setting out to find a cure for the rare genetic disorder Alkaptonuria, Timmis and his team gained funding from the European Commission and formed partnerships with a CRO and pharmaceutical company to launch their own clinical trials. Even before the trials began, they worked with patients to make sure the design was suitable; 'from the start patient-centricity was key'.
The results show this approach certainly paid off. Amazingly in nine months they recruited 50% of their patient population and of the 200 patients recruited, they have only lost five for unavoidable, unrelated reasons. 'We managed to recruit very high numbers because we know the patients very well' Timmis explains.
He sees this as proof that including patient groups in clinical trials works and is something that should be far more prevalent:
'Pharmaceutical companies are generally quite cautious about working with patient groups and patients in general...which is a shame. There are good examples of patient groups and pharma working together more closely, but I think there needs to be more...I see the future of clinical trials is patient groups working collaboratively with pharmaceutical companies.'
Watch the full interview with Timmis below as he explores the challenges of rare disease research and how technology is impacting trials.