Disabled people across the globe have the same general health care needs as non-disabled people, but face a host of barriers to accessing that care. The picture in the UK, it seems, is no different.
Here in the UK, a study found that disabled people ‘reported worse access to healthcare, with transportation, cost and long waiting lists being the main barriers’ (Sakellariou and Rotaru, 2017). The results were also analysed by gender and indicated that disabled women were more likely to have an unmet healthcare need than any of the other groups. In fact, they were 7.2 times more likely to have an unmet mental healthcare need due to cost, when compared with non-disabled men.
What does this mean?
Lack of accessible healthcare results in avoidable disease and avoidable deaths.
Whether it's capability to deliver appropriate sexual and reproductive health care, gaps in how reasonable adjustments are provided for disabled people accessing hospital care or missed opportunities for early diagnosis of cancers through screening programmes.
For example, in 2017 and 2018, less than a third (31.2%) of eligible women with a learning disability had received cervical smear tests, in contrast to 73.2% of women with no learning disability. There are opportunities to make a real difference if we have a clear understanding of the issues.
What does this mean for the HRA?
Ours is just one part of the puzzle of addressing health inequalities: making it easy to do research that people can trust, so healthcare providers can learn how people experience or are excluded from their care.
Earlier this year, the HRA partnered with Health Services Research UK to explore how we can ensure that the research ethics review system - both within the HRA and the UK wide ethics service - works as well for health services research, as it does for clinical trials.
We know that our system gives researchers confidence that they are following acceptable ethical standards, particularly when research includes vulnerable participants such as those with learning disabilities. We also make it easier to do research that people can trust, through proportionate review rather than a full research ethics committee.
Our Think Ethics programme is exploring how to accelerate ethics review in other ways that remain proportionate and which earn and maintain public trust. We understand that ethical review can at times feel like a hurdle to doing research. We are working with our partners in Northern Ireland, Scotland and Wales, alongside a group of advisors with lived and professional experience of health and social care research, to make a positive change.
We aim to:
- offer a streamlined and user-friendly service, which is universally felt as beneficial to research, by the public and researchers alike
- support researchers to think about the ethical aspects of their research
This support will be provided from the initial idea to regulatory submissions and beyond and will give clear insight into the ethics considerations and frameworks against which their study will be reviewed.
Watch this space for updates...
Lou Silver, Equality, Diversity and Inclusion Manager