As clear and as straightforward as possible

Last updated on 14 Dec 2022

'Communication is clear and the burden to taking part is minimised.'

On this page you can read more about the 'as clear and as straightforward as possible' hallmark of People-Centred Clinical Research we are proposing.

We defined the 'as clear and as straightforward as possible' hallmark as 'communication is clear and the burden to taking part is minimised'.

Below you can see a summary of the themes that developed through our literature research and via feedback from our project steering group on clinical research being as clear and as straightforward as possible.

If clinical research is as clear and as straightforward as possible...

Projects show through their design and conduct that they are

  • simple and clear to follow and understand
  • flexible and adaptable to take account of what matters to those taking part - not a ‘cookie-cutter’ approach
  • focussed on the participant perspective of burden
  • do-able and realistic for those taking part
  • have as few interventions as possible for participants
  • have as few data collection points as possible

Research teams need to show that they

  • can design complex studies in ways that are as simple as possible
  • think creatively to ensure the experience for participants is as easy as possible
  • are clear and straightforward in their approach

Quotes from the steering group

We asked our steering group members what they thought made clinical research people-centred. Here's some of the things they said on the hallmark of as clear and as straightforward as possible:

'We have time deficient - overcomplicated protocols.'

'Simplify things on the ground.'

'Keeping everyone in the loop throughout, right to dissemination and make sure that that is easy to understand as well. (note that final report can be technical – needs to be easy to find and understand).'

'Make the information available really early and make it easy to understand.'

'Vaccine trial design was not person-centred. Very long and complex. Payments not being processed, huge forms to complete etc.'

'Where it happens – should you have to keep going on set dates to a hospital that is difficult to get to, you can’t park etc.'

'Lots of complex information is scary.'

'People with dementia and dementia carers - all meetings to start at 9am as convenient for researchers - people with dementia needed to speak up to say this was not possible. Basic example of people's needs not being accounted for. Poor practice example is just as helpful when thinking about what good looks like.'

'Go to the people not people go to the research.'

'I do all this work trying to find something that might help me, and in the end, it leads to nothing, and I think what’s the point. It feels like they don’t want me to know about research, it’s a closed shop, it’s only a club for the initiated, it’s so hard, you really have to search for information.'

'As an unpaid carer with limits on my time, good, clear communication and planning what I cherish in a research project. I need to know what I need to do and when (or by when) and with preferably with long lead times for meetings or appointments. Being provided with this information assures me that I and my caring role are respected. It helps engender a feeling of partnership. So much time is wasted, and stress caused, by informing participants that something is to happen, say, in the coming months, and that a date will be forthcoming, but then isn’t. Communication is not difficult these days. Participants having to make enquiries themselves due to non-existent project communication is not people-centred research!'

Take a look at the other hallmarks

You can take a look at the other proposed hallmarks of people-centred clinical research in the list below:

Back to people-centred clinical research