Why older people are still excluded from health research—and what can be done

Abstract

People over the age of 75 are routinely being left out of clinical studies, and resulting gaps in the data are harming them. Kate Bowie reports On 11 August a coalition of more than 40 UK health research funders and charities issued a rallying call for more older people to be included in research.1 People aged over 75 are “disproportionally under-represented” in medical research in comparison with their burden of disease, undermining the usefulness and accuracy of findings, they warned. The call was unprecedented, but the coalition thought it necessary to draw attention to the issue because the UK population is ageing rapidly. By 2050 more than 19 million people—around one in four—will be aged 65 or over.2 Yet health research has not kept pace with this shift. Data for the past five years from the National Institute for Health and Care Research show that only 15.2% of recorded participants (173 280 of 1.14 million) were over the age of 75 at recruitment—a relatively small number given that around 75% of 75 year olds in the UK have more than one long term condition, a proportion that rises with age.1 The studies that included these patients mainly looked at cancer (29% (941 of 3247 studies)), cardiovascular disease (10% (339)), musculoskeletal and orthopaedics (6% (191)), dementia and neurodegeneration (6% (188)), and respiratory conditions (6% (185)). The relatively small numbers mean this group is often left out of research that directly affects their care. “This exclusion can lead to gaps in evidence, less effective treatments, and care that isn’t properly tailored to those who use services the most,” said England’s chief medical officer, Chris Whitty. So why are they currently excluded—and what can be done to increase recruitment? Although the UK’s Equality Act determines that discrimination on the basis of …