'The people taking part are cared for throughout.'
On this page you can read more about the 'caring' hallmark of People-Centred Clinical Research we are proposing.
We defined the 'caring' hallmark as 'the people taking part are cared for throughout'.
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 caring.
If clinical research is caring...
Projects show through their design and conduct that they are
- considerate of what people need to take part and they help them.
- focussed on the experience, feelings, and the wellbeing of those taking part throughout - and they provide support
- thoughtful - small things can make a big difference
- of minimal cost or burden to participants
- always communicated well
- welcoming, inclusive and they are not alienating
- communicating thanks
- physically and psychologically safe
- adapted to individual needs as far as possible
- helping to access research through care and not gatekeeping.
- not paternalistic or coercive
- facilitating and providing care for the person
Research teams show that they
- are attentive to the needs of participants and those who might be affected by the research
- are thoughtful and empathetic – thinking about what is needed to help the effects of the study procedures on people
- are generous with their time and help people taking part
- care about the participants over and above their own convenience
- show gratitude and rapport
- are available and will help
- facilitate caring for the person
- find out how it feels
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 caring:
'They didn’t check if I was ok to talk.'
'Things require a really nuanced approach, the fine line to coercion is difficult. If your experience of health care is not great, then being asked by your clinician is the worst thing you can do.'
'Have flexibility on budgets… Provide a coffee – this is much better than endless amendments because you can’t recruit people.'
'Factor in time to ask what would help you. Make it up front and centre, cost them in and make them requested.'
'Care mustn’t be a gatekeeper to the research but equally the research needs to feel part of care and about the care of the person.'
'It is about facilitating caring for the patient in the best way you can.'
'Find out how it feels.'
'Talk to people - help them to understand why they aren’t eligible.'
'Considerate of people's needs.'
'Facilitated to take part according to individual needs.'
'They (didn’t) think about how it would affect me.'
'Then they said to me ‘and by the way and as part of a clinical trial we would like to take samples from you to keep them’ and I said ‘well will that mean that you would be able to treat me’ and they said ‘oh no, no this is just for a trial we just need to take your blood and will keep it and do research on it but and there’s no benefit for you and will just take a few hours’ I was really disappointed because I just been told that I couldn’t be treated at (city location A) and then they were asking me to participate in a trial that was based in the same (city location A) but I wouldn’t get any treatment or support from them so it didn’t feel very kind.'
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: