'The research is conducted with and for the communities it affects.'
On this page you can read more about the 'mutual' hallmark of People-Centred Clinical Research we are proposing.
We defined the 'mutual' hallmark as 'the research is conducted with and for the communities it affects'.
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 mutual.
If clinical research is mutual...
Projects show through their design and conduct that they are
- carried out in genuine partnership (side-by-side) with patients, public, researchers, clinicians and decision makers
- with patient and public voices; integral to and with shared power throughout
- of benefit to and valued by the communities who will be affected by the research
- conducted with two-way engagement that benefits the research team and those taking part
- set up to take participant experience into account throughout
- conducted with mutual respect and reciprocal relationships - don’t just do things
- providing the tools to help people make decisions for themselves
Research teams show that they
- are led by and informed by the needs of patients and the public and those making health and care decisions
- listen and act on what they hear
- are not protectionist or gatekeeping – don’t assume or hold all the power
- act with respect
- make sure people feel valued
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 mutual:
'It's all about them asking for personal information from me...it’s all about them asking me, and very little about them telling me the information that I need to know to decide whether I would like to take part.'
'To be in a person-centred environment is to be in an open, clear, two-way communication - so that we can hear voices more often not just in clear, fixed structures.'
'We (researchers and clinicians) are only here to provide the tools to help people make the decision.'
'We hear a lot about people-centred research but is very woolly as a term. What does it really mean? Often it means very little because the person is not at the centre of decision-making, they have no say at all.'
'Imbalance in relationship – you have given lots of personal information to them, they give very little explanation to you.'
'People-centred is making everyone involved in research the centre of all the decision making. Put their involvement at the centre, not a tick box but really truly at the centre. Everyone within the circle of patient or carer who wants to get involved is put at the centre and brought into all of the discussion.'
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: