'The research makes a difference to the people it is for and about.'
On this page you can read more about the 'valuable' hallmark of People-Centred Clinical Research we are proposing.
We defined the 'valuable' hallmark as 'the research makes a difference to the people it is for and about'.
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 valuable.
If clinical research is valuable...
Projects show through their design and conduct that they are
- answering gaps in knowledge that address the priorities and needs of patients and the public, and those making health and care decisions
- valued by the communities they apply to, measuring outcomes or providing answers to questions that are important to them generalisable or transferable into clinical practice
- transparent and reported
- communicated in simple and accessible ways
- efficient and deliverable
- integrated into communities and pathways of care where appropriate to the study design
- involving patients and the public at all stages
Research teams need to show that they
- are led by and informed by the needs of patients and the public and those making health and care decisions
- can communicate in creative ways
- can deliver the study efficiently
- care about the onward difference they might make
- understand how to incorporate patient reported outcome measures where appropriate to the study design
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 valuable:
'Research should be of benefit to the public.'
'People-centred clinical research would prioritise benefits to people and treatment to participants in the research. Benefits to people involved in research and members of the public as end beneficiaries.'
'Role of the clinicians - it doesn’t happen in clinical teams - supposed to have the first approach - doesn’t really work - need to have the ability, confidence and the time to help participants and you don’t get asked because the people you are asking don’t have equipoise.'
'Because of tokenism at early stages things that are at protocol development means that clinical colleagues at sites have a tough gig.'
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: