Charity right on Target with patient insights on clinical trials: where are the others?

This evening I have been reading a fascinating report about women with ovarian cancer and their access to clinical trials.

Last week, Target Ovarian Cancer published the results of their 2012 Pathfinder Study.  It is an excellent piece of work.  What I like about it is that it digs around issues to do with choice and access; both from a woman’s perspective and that of a clinician.  It’s not just about whether they want to take part in a trial or not. Thank goodness.

So, yes, we learn that 9 out of 10 women would go on a clinical trial if asked.  But, interestingly, only 3 out of 10 have been asked to take part in one compared to 4 out of 10 when the Pathfinder Study was last published in 2009.   Two thirds of those women who were offered the chance to take part in a trial did so, compared to just over half three years ago; a sign of increasing willingness among patients to take part in research.

We also learn that many would be happy to go to another hospital to take part in a trial and that most felt they received the right information to help them make a decision about taking part.

I am not surprised that personal motivation and altruism feature above possible treatment benefits in people’s reasons for taking part.  Nor that some women were put off by the possible extra strain on their lives.  However, I wonder if this might be a good focus for researchers to consider in terms of whether the design and methodology works in the interests of people’s participation – something that obviously public involvement can help with.

The story from the clinicians who were surveyed is that most seem to work in centres where clinical trials happen and the majority are involved in some way.  However, there is a general view that bureaucracy (45%), lack of time to recruit patients (38%) and a lack of trials (35%) is hindering progress.  Look further behind these results and there seems to be a strong, overall message around capability and capacity (the need for more research nurses, administrators) but perhaps a hint that people are not switching onto existing sources of help.  For instance, about a quarter say it is not easy to keep up-to-date with trials but only 9% are aware of Target’s ovarian cancer trial database.

Here’s what I hope having read the study:

– The study gives some really valuable insights into a range of choice and access issues so I hope that Target is now going to work with clinicians and others to think about how these can be improved.

– The Government recently launched local pilots of the ovarian cancer ‘Be Clear on Cancer’  awareness campaign.  Since the study found that women in the late stages of ovarian cancer are more likely to be offered the chance to take part in a trial, I wonder if some thought needs to be given to how to make women aware of clinical trials much sooner after diagnosis?

When you read studies such as this you can’t help but ask: where are the others?  If many charities were to do the same, we would be better able to build up an overall picture on choice and access, not to mention more condition-specific information.  And this, in turn, would help us change clinical practice so that more people had the chance to take part in research.

On the other hand you could continue to award thousands of pounds to researchers to keep hammering away at that molecule for a further three years.  Your choice.  I’m just not convinced it’s always the right choice for patients.

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