Online access to health records poses serious risks as well as benefits

Electronic medical records probably make healthcare safer and are now ubiquitous in UK general practice. They are now also potentially accessible by patients, something that while offering potential benefits may also fall foul of the law of unintended consequences.

All UK citizens have the right to see their medical records. Until this year that meant leafing through a paper copy or viewing a screen in your GP’s surgery. Few patients took the opportunity. But as of April 1, all general practices in England must offer adult patients online access to a brief record summary, and access to the full record as soon as possible. The vision is to provide all adults with online access to their full health and social care records by 2020.

Online access is more convenient, potentially empowers and enables patients to take better control of decisions around their healthcare, and may improve efficiency. There are also ethical arguments about autonomy and individual rights: the information in the medical record belongs to the patient, who has at least equal rights of access as any clinician or healthcare staff.

While there is some evidence that patients experience satisfaction and benefit from this sense of control, we do not know whether online access translates into better health or health care or whether it improves service efficiency. And, as my colleagues and I have argued in a recent British Journal of General Practice commentary, there is no research on potential harms, particularly related to privacy and confidentiality.

Potential pitfalls

One specific potential harm is coercion: where patients unwillingly give others access to their records from overt threats or force, or under the guise of helping a vulnerable relative. References to abuse or maltreatment in the medical record seen by household members may lead to escalation of the abuse, restrictions on access to healthcare for victims, or pressure or aggression directed at health staff in demands to change the record.

There is also the case of abused and neglected children, whose parents may have authorised access to their records. The 30% of women and 16% of men who experience domestic abuse in their lifetime and the 24% of children who experience abuse or neglect over childhood are at risk of further harm. Without the assurance of confidentiality, how can we expect patients to seek help from their GP for the full range of physical, emotional, sexual, and social problems that may affect them?

Medical records are supposed to be confidential - can we keep them that way if they’re accessible online?records by alexskopje/shutterstock.com

Equally important is the idea that the clinician, worried about coercion or information leakage within a household, may be inclined not to record anything deemed sensitive, such as early concerns about abuse or maltreatment. This would be contrary to recent guidance (from the General Medical Council, the National Institute for Health and Care Excellence, and the Royal College of General Practitioners respectively).

Workarounds

The Royal College of General Practitioners recommends that patients be informed about the dangers of sharing login details, that they are signposted to abuse support services, and that GPs are vigilant for coercion and prepared to withdraw online access where necessary. Of course the reality is much more complex, with coercion or information leakage occurring out of sight.

Technical solutions could exclude certain parts of the record from online access – restricting it to recent records or test results, for example. It might also be possible to filter out obviously sensitive elements while providing online access to the full medical record or for patients, hiding certain data in an electronic “walled garden”. As yet it’s not easy to do this, and it would require having to minimise the opportunity for human error.

Or GPs could systematically change the way they record sensitive information such as abuse and neglect. This would require training, and risks undermining the benefits of making a complete and cumulative health record available in the first place. Pilots of online record access, while reporting benefits, have not resolved potential harms to maltreated children, those reliant on carers or those in abusive relationships.

Online access to medical records is likely to have a transformative effect on what is stored in the record and how it is used, and on general practice itself. But in the absence of robust evidence about effectiveness and safety, we need to understand how it will be implemented and the potential harms and safeguards required – before the juggernaut of implementing the process reaches terminal velocity.

Gene Feder receives funding from National Institute of Health Research funding programmes for research on domestic violence.