Dignity and respect in clinical trials: some thoughts

Looking at how we can improve the patient experience of being in a clinical trial is something I’ll be doing a lot of this year as National Director.

It will be one of the objectives of the NIHR strategy to increase research participation that I have just broken off from writing to do this blog.  If you haven’t seen me talk about these objectives already, they look something like this at the moment (out in all good bookshops some time soon!):

  • Supporting choice with accessible information for patients and professionals
  • Promoting participation by increasing the visibility of research in care settings
  • Involving patients in research development, innovation and diffusion
  • Using patient insights to remove barriers to participation and improve their experience of research
  • Championing patient leadership in research locally
  • Developing research active communities
  • Establishing partnerships to promote patient choice

We are already doing some scoping work on the subject through NIHR’s Clinical Research Facilities (CRFs). Patient experience is also being measured as part of the way the new Local Clinical Research Networks (LCRNs) are run.  And a number of my colleagues are immersed in specific projects which aim to gather and use patient insights to improve the quality of care people receive.

All to the good. A considered look at dignity and respect in clinical trials has been a neglected area for too long.

Ensuring that what we do is aligned nationally with NHS England’s patient experience work , the learning that others have already published – such as ‘The Patient Experience Book’ by the NHS Institute for Innovation and Improvement -, and the output of innovators such as Patient Opinion is going to be essential.  Colleagues should be thinking similarly and endeavouring to do the same at a local level.

So what’s the problem you may ask?  A IPSOS MORI survey commissioned by the Health Research Authority (HRA) and published in 2013, found that 82% of people said they were confident or very confident of being treated with dignity and respect in a health research study.  Sounds positive. However, for almost 1 in 5 of us that means there is an element of doubt.

Similarly, people’s reported experiences of being in research generally tend to be good.  But dig behind this some more and there are common themes that emerge around information, consent and professional attitudes; the sense that one is still more subject that participant. Most certainly not part of the team.  And then there’s that whole chestnut of not being thanked for one’s contribution.

I encourage you to look at the ever-excelling healthtalkonline to hear more patients and carers talking about what was good and what was not so good for them. There is no room for complacency and much to leave one restless; enough at least I hope to help you understand that campaigns like #AllTrials are not so much about transparency but about patient rights.

I must admit that I try to avoid using words and phrases such as ‘patient-centredness’ and ‘patients at the heart’ these days.  Do you?  In my opinion they seem to run roughshod over the reality of public involvement which is that it is fundamentally not about ‘you’ or  ‘me’ alone, but about relationships: patient:doctor, patient: nurse etc.   And it’s the nature of these relationships that are critical to sustaining dignity and respect in all types of research.

Today I spoke to the London Regional Meeting of Clinical Research Nurses (CRNs), one of five such meetings being held around the country in the next few weeks to celebrate what they do.  Last year they produced a rather wonderful pamphlet ‘Our Voices’ in which a few  told their story of what they do, how they got there and what they like about their role.  It is simple and straightforward.  Respect for the patient and for carers shines through.   It mirrors everything I have ever been told by patients about how important the clinical research nurse was to their experience.

I think that’s a good point on which to end.  But also a good place to take up the discussion.

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