'All people can be included, within the context of the study.'
On this page you can read more about the 'maximises inclusion, equity and diversity' hallmark of People-Centred Clinical Research we are proposing.
We defined the 'maximises inclusion, equity and diversity' hallmark as 'all people can be included, within the context of the study'.
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 that maximises inclusion, equity and diversity.
If clinical research maximises inclusion, equity and diversity...
Projects show through their design and conduct that they are
- representative of the populations affected by the study outcomes
- available in different ways for different people
- available in different places and where people are
- communicated in ways that reach out to different people
- communicated in ways that are clear and understandable to different people
- accessible and considerate of what different people need and help them to take part
- help people to take part who have been underserved by research in the past
- flexible and adaptable to take account of what matters to those taking part - not a ‘cookie-cutter’ approach
Research teams need to show that they
- think inclusion, equity and diversity first and they can justify exclusions
- are a diverse team where possible and partner with diverse groups and communities
- understand which communities will be impacted by the research outcomes and who needs to be included
- can respond to the different needs of people or participants and they help them
- are culturally competent, aware, and considerate
- respect differences in people
- are creative
- can build relationships with communities
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 maximises inclusion, equity and diversity:
'Research…you have to seek it out yourself, it doesn’t come to you. Where do you go to look for it, that can be hard. Language can be a barrier. If you find relevant research, you have to do the work to get involved.'
'Walk in other people’s shoes.'
'Generalisable findings - focussed on benefits for all people.'
'Go the extra mile to be inclusive – e.g. take steps'
'Vaccines are a good example. Think about inclusion for the results to be generalisable to the whole population.'
'Proactive inclusivity - language, mental health, learning disabilities, minority groups. Make sure the information is out there.'
'Exclusion criteria – where do they come from? Often about making it easier and cheaper but not making it better. Require good evidence-base for exclusions that is better than that’s too expensive or we can’t be bothered.'
'Clinical settings can be alienating.'
'Another time I did see flyers for a trial that would have been great for a condition I have, and I kept seeing posters for this research that they were doing, and I kept emailing them and they never once replied, and that really annoys me. I honestly don’t know how they get participants when their communication is so bad. They make no effort to reach out to most people.'
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: