'The research process and the outcomes of research can be trusted.'
On this page you can read more about the 'trustworthy' hallmark of People-Centred Clinical Research we are proposing.
We defined the 'trustworthy' hallmark as 'the research process and the outcomes of research can be trusted'.
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 trustworthy.
If clinical research is trustworthy...
Projects show through their design and conduct that they
- share in the best interests of the people taking part
- have integrity, they are accurate, honest, and do what they say
- are clear about what is expected and what will happen
- are psychologically and physically safe
- are ethical
- are transparent and open to scrutiny, they are registered, reported and available
- are good quality, the methods used will answer the question and the findings are credible
Research teams show that they
- act with honesty and respect
- are open and available to scrutiny
- do what they say they will do
- are available for participants and are generous with their time
- listen to participants
- will take time to talk if things go wrong or they are not going to plan
- admit mistakes and work openly in partnership to correct and prevent them
- really mean what they say and don’t just tick boxes
- understand that how research has been experienced by people throughout history affects trust in research
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 trustworthy:
'Don't just do things.'
'They assumed I knew what was happening.'
'They ask you all the questions without telling you what it is that they are doing. Screening you but giving very little back. You might be excluded but given no information about why, what the criteria excluding you are.'
'Setting up a steering group and then not inviting or enabling public co-applicants to attend.'
'What are they doing with this information, who is going to see it, where is it stored? Are they selling it on? I receive lots of spam emails and phone calls from people trying to sell me things. Who has given them my number? Details about me that they shouldn’t know. I feel violated.'
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: