‘Access and security’ key to electronic sharing of health data

Most people are happy for information about their health to be collected and shared electronically but want access to, and security of, the data protected, a new survey suggests.

A substantial minority of people have concerns about non-relevant or sensitive information about their health being shared.

The national survey of 1,300 people was carried out by the Health Information and Quality Authority (Hiqa) together with the Department of Health and the Health Service Executive.

The Sláintecare plan for the future of the health service envisages a move to e-health systems including the widespread use of electronic patient records.

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The survey found that:

• 97 per cent believe it is important for healthcare professionals to have access to their information when treating them;
• 99 per cent believe it is important that professionals have access to their digital care record at a time when they are unconscious;
• 94 per cent believe health information should be used to improve the quality of care provided to patients and for research;
• 86 per cent would like to have access to their own digital records via a national patient portal.

However, 71 per cent said they would like to be informed about what information will be shared between their GP and hospital and how this information will be used beyond their direct care (77 per cent).

One-quarter said they would not want information used if it was personally identifiable, or would be used for profit.

Rachel Flynn, Hiqa's director of health information and standards, said the findings showed the public welcomed a move towards a digital healthcare system.

“People see the value of sharing health information electronically and of healthcare professionals having quicker access to a patients records.

“However, in the aftermath of the cyberattack on HSE systems, it is more important than ever that the public is assured about the security of patient information. It is also essential that patients are sufficiently informed about any use of their information.”

The watchdog plans to use the survey findings to develop recommendations for the Minister for Health on a model for the use of personal health information.