It was a day like any other in January 2007 when mum-of-two, Deborah, found a lump in her breast.
In the weeks and months that followed she was diagnosed with breast cancer; had a biopsy, then a mastectomy, and then six months of chemotherapy.
But as well as her conventional treatment, Deborah was also invited to take part in a clinical trial, TACT-2, which was supported by Cancer Research UK.
The trial compared different chemotherapy treatments, to try and reduce some of the side effects and improve the long-term benefits.
Deborah decided to take part because she was keen to help others with breast cancer in the future, and felt better knowing that by taking part she would also be closely monitored.
“If taking part in the trial means others might be helped in the future then I’m very happy with that,” Deborah told us.
Like Deborah, many people affected by cancer choose to take part in cancer research, either through clinical trials or by other means like donating tumour samples.
While their reasons for participation may vary, one factor they often have in common is an expectation that their participation will lead to something beneficial; maybe not for them personally, but for people diagnosed in the future.
In fact, each year tens of thousands of people with cancer take part in clinical trials, including more than 25,000 on trials supported by Cancer Research UK.
But could more take part? Are enough patients being made aware of opportunities to participate in cancer research?
Cancer Patient Experience
Last month, we reported on the results of the Cancer Patient Experience Surveys (CPES) for England and Scotland. And overall, the majority of patients were very positive.
For example, when asked to rate their care on a scale of zero to ten, the average score from patients in England was 8.7.
But last week, the underlying data from the English survey was made publicly available, so we got a chance to see whether all the NHS Trusts across England are performing equally, or if some are better than others.
And we specifically wanted to see if all patients had equal opportunity to take part in cancer research.
So what did we find?
The National survey for England showed that 27% of patients said they did have a discussion about whether they would like to participate in cancer research. 64% said they didn’t, 5% said they didn’t but they would have liked a discussion and 4% said they didn’t know or couldn’t remember.
Although 27% saying they did might feel quite low, one in six British adult cancer patients do take part in a clinical trial – a higher proportion than anywhere else in the world.
Nevertheless, we can still do much better. We want every cancer patient to be made aware of opportunities to participate in research. That doesn’t mean every Trust has to host studies, but they should all be able to tell patients whether there are studies available to them.
Since the results showed that this isn’t always happening, we wanted to see whether some Trusts are doing this better than others.*
So when we dug down a little deeper we found a big variation in the average percentage of patients who said that they’d had a discussion about taking part in research – 39% in the top fifth of Trusts, compared to just 18% in the bottom fifth of Trusts.
This is worrying, as it suggests that some Trusts aren’t making patients aware of opportunities to take part in research.
Our chief clinician, Professor Peter Johnson, is particularly concerned.
“The extent of variation between NHS Trusts – with the performance of the top 20% more than double that of the bottom 20% – shows that the responsibility of the NHS to promote research is not being applied uniformly,” he told us.
“If we are to achieve our ambition to see three in four patients surviving the disease by 2034, it is vital that every eligible patient is given the opportunity to participate in cancer research.”
So in other words, NHS England still isn’t doing enough to promote research or share best practice.
And although The National Institute for Health Research (NIHR), via its excellent ‘OK to ask’ campaign, aims to encourage more patients or their carers to ask about research opportunities, we’re concerned that failure of some health professionals to start these conversations is a significant barrier to participation.
And this is really important for a number of reasons.
For example, research has demonstrated that outcomes for patients tend to be better at more ‘research active’ hospitals.
On top of this, taking part in research can be an important step in a cancer patient’s own pathway.
- Watch the Youtube video here
Just like Deborah and Nilesh, for many patients this is not only about treating their own disease, but also helping other cancer patients in the future.
So over the coming months Cancer Research UK will be looking at these issues more closely and feeding into the development of NHS England’s research plan, reminding them of their obligation to promote and support research in the NHS.
We will continue to monitor NHS England’s progress on research and also more broadly, their performance to meet the ambitions set out in the Cancer Strategy for England.
To date, research has delivered great progress in cancer care – half of all patients now survive cancer as a result of it. But our ambition is to accelerate progress so we can see three in four patients surviving cancer by 2034.
And this can only be achieved if the NHS, with the support of Government, charities and the public, provides the right environment for research to thrive.
Dr Edward Blandford is a policy advisor at Cancer Research UK
*We analysed the case-mix adjusted figures that were published. Using these allow fairer comparisons between trusts as they account for the impact of differences in age, gender, ethnicity, cancer type and deprivation. The figures published excluded patients who said they didn’t know or couldn’t remember.
Alex October 11, 2016
How can people with GI cancer register for any future trials ?!
Sandra McCormack October 6, 2016
I have in the last 2years had the camera down twice with suspected Barretts, thankfully no pre-cancerous cells found, then last year had a neck/head operation due to cyst on voice box removed, thankfully no cells found, I have a hyist herna and take omeprazone daily, I am 58 and would be really grateful if I could be considered for any up-coming trails available for this new camera testing for food pipe cancer.
CHRIS GEESON September 7, 2016
IF YOU WANT ME TO PARTICIPATE IN TRIALS I AM HAPPY TO DO SO. SAMPLES OF MY lentiginous MELANOMA WERE TAKEN AT THE NOTTINGHAM CITY HOSPITAL.(STAGE ONE) I am not a sun worshipper, don’t think my feet have ever seen the sun, but ended up losing my toe .
RIchard Palmer August 1, 2016
A few years ago I was invited to take part in the Protech Study for Prostrate Cancer – I had BPH. I agreed and, for some reason underwent three biopsies in a few months, after which my PSA reading went from 4-5 to about 50, fluctuating. This resulted in more biopsies and an MRI scan, all of which revealed nothing – escept a request from the consultant to conduct another biopsy (declined)