So far in this column, I’ve written about what recent research has to say about issues that are important for people with learning disabilities. But what about when these people are excluded from research altogether?
Being left out of research is a big problem – if you’re left out, then what study questions get asked, what research gets done and what comes out of this will not be designed with you in mind.
We have known for way too long that people with learning disabilities are more likely to have a great number of health problems from an earlier age than others but are less likely to get the health services they need, meaning that they are dying on average 20 years younger.
Designed out
The very language of the Equality Act 2010, which requires health organisations to make reasonable adjustments to their usual provision, shows that services are not routinely designed for people with learning disabilities.
We know that people with learning disabilities are excluded from health research.
In 2014, American professor Maurice Feldman and colleagues reviewed 300 clinical trials. They found only 2% of these studies clearly included people with learning disabilities, and more than 90% were designed in ways that would automatically exclude people with learning disabilities. The researcher estimated that at least 70% of the trials that had excluded people with learning disabilities could have included them with relatively small changes to how they did things.
In 2020, University of East Anglia researcher Samuel Spaul and colleagues reviewed over 25,000 research projects funded by the National Institute for Health and Care Research (NIHR), the major funder of health research in England. They found that 60% of projects excluded those with learning disabilities and/or autism.
Reasons for exclusion
Earlier this year, Ruth Bishop and her colleagues (including two self-advocacy groups) found that 78% of 180 NIHR research projects excluded people with learning disabilities.
They sent questionnaires to project researchers, who gave a wide range of reasons for not including them. These included:
- Not having the resources and the funding needed to include people with learning disabilities
- Many research teams having no one with any experience of working with people with learning disabilities, let alone having people with learning disabilities in the research team
- Research ethics committees often demanding information sheets and consent forms that were overcomplicated and inaccessible, insisting on informed consent when getting assent was perfectly feasible, and insisting that people with learning disabilities should be excluded from research that discusses upsetting issues to protect them
- The very design of research baking in exclusion, from using inaccessible methods to researchers arguing that the health intervention being tested would itself be inaccessible to people with learning disabilities.
Looking at these reasons given by project researchers, people in self-advocacy groups reflected that making research accessible to people with learning disabilities would also help a lot of other people to participate, and that research co-produced with people with learning disabilities would solve a lot of the problems.
Research by Dorothy Coe, Victoria Shepherd, Amy Russell (at Newcastle, Cardiff and Leeds universities respectively) and others reinforce these findings, giving ample evidence for how unwarranted this exclusion is and developing resources that researchers can use to make their work more inclusive.
To be fair to the NIHR, it has funded most of this research showing the exclusion of people with learning disabilities. The urgent question is when this will lead to the big changes needed in how the NIHR and other research funders, ethics committees, universities and health services operate.
There is no excuse.
