Cancer patient experience survey results show variations in access to clinical trials and research

The results of the annual cancer patient experience survey are out today.

For those of us committed to improving patient access to clinical trials and other research, this year’s report is particularly interesting.  As far as I know, this is the first year that the survey asked patients whether taking part in research had been discussed with them.  You can find the results of these particular questions on p57 of the report linked-to above.

The overall finding is that 33% of cancer patients said that taking part in research had been discussed with them but 67% of patients said it had not.  There are considerable variations according to tumour type with urological cancer coming out worst.  By Trusts the percentage of patients who were asked about research ranges from 14% to 62%.  Whatever way you cut it – by tumour type or geographical area – the majority of people who were asked were glad that the subject had been broached.

In a field which has built a significant reputation for improving patient access to research – thanks to the National Cancer Research Institute (NCRI) and the National Cancer Research Network (NCRN) – these figures show the work still to be done to bring research to the fore of the conversation that cancer patients have with their doctor. I would suspect that other conditions have a steeper hill to climb in comparison.

There is no magic bullet to improving access.  The survey highlights the future importance of things like the NHS Choice Framework and the strengthening of patient rights through the NHS constitution in empowering patients to ask the question. But a lot will also rest on ensuring NHS Trusts prioritise the access agend; that they make it their job to raise awareness of their research activity and the importance of patient participation in it.

This week, through NIHR CRN CC, we kicked off a piece of work – Involvement4Access – to bring together patients and support them as leaders within Trusts environment to improve patient access to research.  On Wednesday I had the opportunity to attend a Royal College of Paediatrics and Child Health (RCPCH) workshop about research where parents and young people reported very real differences in the willingness of hospitals to advertise research openly on wards, receptions areas etc.  The reasons put forward by hospitals for not being more open about research are often misconceived if not plain bunkum.

But improving access will also require patient groups and charities to do more to support the patient voice in lobbying Trusts, health professionals and others to change their approach.  There is much in this report and in the recent NIHR league tables of research activity to aid this work.  Yet patients need the right tools and information that they and their families can use confidently in order to broker the conversation with their GP or consultant. They also need to hear more from their representative bodies about how they should consider taking part in research as part of their overall treatment.

At the same time, the survey findings about people who were not asked about research on whether they would like to have been, highlights the fact that to participate or not is a  ‘personal choice’ which must be respected.  53% of people said they would like to have been, 47% said they would not have liked a discussion.  Insight into the patient experience from a research perspective – at what point in their care and treatment should the conversation take place, with whom and how – will increasingly be important.  That’s why today’s survey must be repeated but also used as a prompt for further inquiry.  It should also be repeated in other disease and conditions areas as well.

At the end of the day, providing better patient access to research is about improving patient choice, leadership, insight and voice.

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