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Recommendations The report makes the following recommendations for designers and developers of digital tools, and the NHS organisations who select and implement them: Work with digital innovations that meet the highest standards for accessibility and usability; Test digital products and services thoroughly with a cross section of patients, providers and commissioners; Use data to optimise and improve delivery to improve outcomes and minimise exclusion over time. Understand how different people may need specific channels of delivery at different times or for different services; Ensure you capture data so you can measure and compare outcomes and experience by channel. Don’t plan care pathways for the majority – ensure it is optimised for those from minority backgrounds too; Consider the support needed to move people to digital pathways; Ensure equality impact assessments for transforming care pathways pay attention to digital exclusion as a potential risk of inequality. It is also calling for designers, developers and the NHS to work together on the following areas: We need to develop frameworks, similar to those seen for information governance and clinical safety, which would set out guidance for mitigating against health inequalities that could become adopted and embedded by design; Ethical considerations must be built into the clinical safety case of the tool and data used to inform or train algorithms must be thoroughly examined for bias.

The guidance covers the following areas: Part 1: Raising a concern Duty to raise concerns Overcoming obstacles to reporting Steps to raise a concern Part 2: Acting on a concern Investigating concerns Help and advice

Once upon a time there was a little boy. Let’s call him Albert. Little Albert had grown up in the hospitals until one day, when he was just 9 months of age, he was taken by a couple who gave him lots of interesting and friendly objects to play with. One by one, Albert was shown bunnies, puppies and little white rats amongst other fascinating objects. He was intrigued by these soft play things and enjoyed exploring the shapes and textures that were new to the enquiring infant. One day as he was about to play with his favourite rat, Houdini (poetic licence employed here), there came from behind him a loud and frightening crash like the sound of metal being struck. The shock made him cry but he soon calmed as the noise died away. He settled to play with Houdini again. But once more, as he reached to pick him up from the cold wooden floor, the child was alarmed by the same loud clang. This happened again and again until eventually whenever Houdini was placed near to him, he began to cry with fear. His beloved pet and ally had now become an object of terror. The worst thing about this tale, is that it isn’t a tale at all. Instead, it is part of a regrettable body of research carried out by a very real couple of psychologists, John Watson and Rosalie Rayner, who wished to establish how phobias were formed. This study is very much set in a specific time before formalised codes of practice and ethics were formed. It is work that would thankfully not be possible to carry out in current times. In accordance with current UK ethics, such as the British Psychological Society’s ethical code (BPS 2018), this study would have been able to have been prevented on several grounds. The BPS guidelines require four principles to be followed: respect competence responsibility integrity. Amongst these principles, there are at least four issues that would be able to protect future participants in research from ever being treated in the way which befell Little Albert. Researchers now are required to: respect participants’ dignity not share identifiable personal details remain aware of the wellbeing of the participant ensure that they do not abuse their potentially perceived position of power. Watson and Rayner did none of these things. They certainly did not treat Little Albert in such a way that his dignity remained intact. In addition, they carried out research on a child (for which a whole extra section of ethical guidelines exists). However, this child is now known to have been ill from the outset and they caused additional emotional harm that was never able to be erased. This highlights the abuse of a position of power, and the very fact that researchers now are able to narrow down the true identity of Little Albert brings into question the details that were added to their original report. This unfortunately true not-so-fairy-tale is an example of why we need an ethical framework when designing research. In some ways now, it feels like second nature; it’s surely logical to treat others with respect? Sadly these guidelines were unable to help Little Albert, but because of him and others like him, we have learnt and listened. His sad demise will serve to protect those that come after him. Read the other blogs in this series Why investigate? Part 1 Why investigate? Part 2: Where do facts come from (mummy)? Who should investigate? Part 3 Human factors – the scientific study of man in her built environment. Part 4 When to investigate? Part 5. How or Why. Part 6 Why investigate? Part 7 – The questions and answers Why investigate? Part 8 – Why an ‘It’s an error trap conclusion’ is an error trap Why investigate? Part 9 – Making wrong decisions when we think they are the right decisions Why investigate? Part 10. Fatigue – Enter the Sandman Why investigate? Part 11: We have a situation