NIHR is heading-up a campaign for International Clinical Trials Day (ICTD) on 20th May entitled ‘Ok to ask.’ Its aim is to empower more patients to talk to their doctor about research.
I happen to be writing this from Bergen in Norway where I am speaking at the Nordic Health Research and Innovation Conference later today.
The chiseled coastline here is known for fjords and its numerous small islands; frozen tears tumbling down granite cheeks. Over dinner last night, two of my fellow delegates – both clinical research nurses – told me about the arduous island-hopping journeys made by cancer patients to be part of a gynaecological trial. Not just occasionally, but every three weeks, motivated by a desire to improve the prognosis for all women.
Give or take the odd ferry there is not a world of difference between this ‘journey’ and that made by hundreds of thousands of patients in the UK who are taking part in clinical research this year (well, have you ever tried changing trains at Crewe?). Nor the fact that, for most people who participate in research, the opportunity only arises because of a conversation with a confident and well-informed doctor, nurse or health professional.
We need to get better at helping these conversations take place in our surgeries and hospitals up and down the country and increase the number of people in research studies. That’s why this year’s International Clinical Trials Day (ICTD) ‘Ok to ask’ campaign is so important. It’s the only national campaign for ICTD ever to have taken place around the world that I’m aware of and, I’m delighted NIHR is leading it.
‘Ok to ask’ is about empowering patients to ask their doctor about clinical research relevant to their care and treatment which they might take part in. It’s also about saying to doctors that it’s more than ‘Ok to ask’ patients about being in research. In fact, most people would like to be approached about opportunities as the results of last year’s National Cancer Patients’ Experience Survey (NCPE) showed.
Whether you are a patient, carer, doctor, nurse, researcher, charity CEO or interested member of the public, there’s many ways in which you can support the campaign. Just visit the NIHR CRN ‘Ok to ask’ website. And whether you are an NHS Trust, patient group or research team there are loads of materials to help support your conversation with patients.
Listening to the conference debate here this afternoon the prevailing opinion seems to be that Nordic clinical research is as becalmed as the small rowing boats on the fjord outside. I think they are being hard on themselves. But it is the sort of discussion we would have had in the UK five or six years ago. Not so now. Our own clinical research networks are the engine by which we are delivering every greater opportunities for patient’s to be part of research. Over 500,000 patients took part in research in the UK last year. By doing so they are helping to improve the quality of our health services in the future.
It all begins with a conversation. So let’s make it a national one.