Survey: Cancer patients and research – the signage is there but not the opportunity to take part

You know how the story goes.  Cancer is way ahead of other conditions when it comes to patients having the opportunity to participate in clinical research.  But there’s still lots of room for improvement.

Today NHS England has announced the results of the annual National Cancer Patient Experience Survey.  Almost 70,000 patients took part in the 2013 survey.  And for the second year running it includes the results of people’s responses to questions about access to, and participation in research.  It is therefore becoming an important tracker of how this aspect of the patient experience in the NHS is changing.

This year’s survey includes a new question about whether people have seen information about research in their hospital.  It really is good news that 85% said they had and only 15% had not (I am not going to deal much with regional or local variations today but I invite someone to compare individual Trust survey results against those for recruitment as published by the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC).  Perhaps a patient-friendly ‘access map’ is called for?

Disappointingly only 32% of patients said they had had a discussion about research with a clinician or health professional, 68% had not.  This is more or less the same result as last year and suggests ‘patient choice’ to take part in research is struggling to get a lift nationally.  However, it is worth adding that the survey was conducted prior to the ‘Ok to ask’ campaign this year and a number of other local and national initiatives.

Yet, look a bit deeper and the variations are massive across from Trust to Trust (from 11% to 62%).  Reflecting on this and some of the feedback on our ‘Ok to ask’ campaign in May 2013 I would hazard a guess that more focus needs to be given to helping health professionals have these conversations and feel able to signpost patients and families in the right direction.

Finally, 64% of people went on to take part in research and 36% did not.  But again the variations are significant from Trust to Trust – from 37% to 94%.  Overall though, this result mirrors other evidence about the way people are positively disposed to taking part in research given the chance.

The report does not contain any discussion of possible reasons for the above results and perhaps this will be forthcoming although I am disheartened by the fact that I could see no reference to research in the Foreword to the report.

Much food for thought and I would welcome views…

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