All patients have the right to see their medical records. Until relatively recently, this required going to the practice and receiving a print out of the record or access to a screen to examine it. Few patients did that. But as of April 2016, practices need to offer adult patients coded information in the record, to be followed as soon as possible by access to the full record. The vision is that all adults will have online access to their full health and social care records by 2020.
Patients may be forced to unwillingly give others access to their online record
However, not all the dangers have been considered. Online access is potentially more convenient for patients, empowers and enables them to take better control of their health and health care, helps them navigate a complex health care system and correct mistakes in the record. And the health information in the record belongs to the patient who has at least equal rights of access as healthcare providers.
There is also some evidence of benefit in terms of patient experience, satisfaction, and feeling able to take control of their health care, with possible safety advantages when patients have online access to medication lists. However, we do not know whether online access translates into better health or health care or whether it improves service efficiency. There is no research on harms, particularly related to privacy and confidentiality. A potential harm that particularly concerns me is coercion: patients may be forced to unwillingly give others access to their online record.
Coercion may result from overt threats or physical force in an abusive relationship or may appear under the guise of helping a vulnerable relative. If an abusive household member sees a reference to abuse or maltreatment in the medical record, they may escalate the abuse, restrict access to health care for victims, or aggressively pressure health staff to change the record. This may be especially relevant for abused and neglected children, whose parents may have authorised access to their record. Increasing online access means that the 27% of women and 15% of men who experience domestic violence in their lifetime and the 24% of children who experience abuse or neglect over childhood are at risk of further harm. Without assured confidentiality, how can we expect patients to seek help from us for the full range of physical, emotional, sexual, and social problems that affect their health and wellbeing?
Equally important, the GP, worried about coercion or information leakage within households, may not record anything deemed to be sensitive, including early concerns about abuse or maltreatment.
Three ways of minimising harm from online access have been proposed, but they do not address all the concerns.
First, informing patients and professionals. The RCGP recommends that patients be informed about the dangers of sharing login details when they register for online access, that they be signposted to abuse support services, and that GPs be informed about coercion, remain vigilant for it, and withdraw online access if coercion is suspected or known. This solution does not account for the complexity of coercion, much of which will be hidden, or for the potential for health records to ‘leak’ within households.
Second, we could design technical solutions to exclude certain parts of the record from online access; for example, restricting it to recent records or test results only. We may also be able to find technical solutions to filter out obviously sensitive codes while providing online access to the full medical record or for patients to hide certain data in an electronic ‘walled garden’. Unfortunately this is not yet available on most GP systems. We would have to minimise the opportunity for human error in any such technical fixes and think about whether vulnerable patients would be able to navigate these solutions.
Third, GPs could systematically change the way they record sensitive information, such as abuse and neglect. Such an approach will require training and risks losing the benefits of a complete and cumulative health record. In addition, this solution only deals with information which is obviously sensitive. 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 is likely to have a transformative effect on the content and use of the health record and also on general practice itself. But in the absence of robust evidence about effectiveness and safety, we need a public debate about implementation, potential harms and safeguards. As the juggernaut of online access rolls on, we can reduce the risk of harm through slowing, not accelerating, implementation, and restricting access to recent information which has clear medical utility, such as test results, referral letters, clinic letters, current medication, and allergies.
Professor Gene Feder is Professor of Primary Care at the Centre for Academic Primary Care at the University of Bristol and is a GP in Bristol