The report provides detailed insight into what is known about people’s attitudes and expectations of the use of health and care data. It identifies gaps in evidence and current understanding, and makes recommendations for what meaningful engagement must look like to build trust.
The report confirms a strong expectation amongst the public that their information should be joined up and available to clinicians at the point of care to support their individual care – indeed it highlights the surprise of many people when they find that this is not routinely the case. But the picture is less well developed when thinking about how a person’s health and care information might be used for purposes beyond their own individual care, for example, quality improvement, service planning or research.
OneLondon is committed to a deeper dialogue and deliberation with patients, publics and professionals across London. A genuine and deliberative programme of engagement with Londoners will surface people’s expectations and explore what trade-offs are agreeable to meet these, within the constraints of technical systems and the realities of professional and organisational practice.
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