ELECTRONIC PERSONAL HEALTH RECORDS. There are many benefits but what about the risks?

Many of us are already using online healthcare facilities. ‘Patient Access’ has been available for some time. I use it myself for convenient repeat prescriptions. The area of digital health technology is growing at a phenomenal rate as it is being incorporated into apps and internet access. Government policy intends that ‘electronic personal health records’ will eventually be accessible to every adult in the UK via the internet and are supporting an NHS app to help create this future vision. This means that patient investigation results, prescriptions, health files and appointment booking facilities will be available for the general population to access from their personal computers and smartphones.

Practices have already started to use a ‘lite’ or ‘full’ version of the online access system and believe that it has brought improvements to the care of their patients. They believe that gaining access to and understanding online medical access is liberating for doctors and empowering for patients and increases patient understanding and involvement in their health care. In essence ‘no decision about me without me.’

Dr Amir Hannan, his patients and practice are huge advocates of online health technology, which enables a Partnership of Trust through Records Access and Understanding. They probably understand the importance of responsible sharing and trust in patient care more than anyone, as it is the same practice that the infamous mass murderer Harold Shipman used to work in. The practice has been a pioneer in electronic health record access and understanding and has enabled over 8,100 patients to use this service (over 65% of his patients). They advocate for a ‘partnership of trust’ between patients, carers and clinicians and think that it is essential to focus on the relationship that a patient or carer has with their GP or nurse who knows them, instead of ad hoc appointments with any GP or nurse. He believes patient care is all about trusting relationships that are developed over time.

‘The doctor/ patient relationship is changing. For generations, it has generally taken the form of an adult/child relationship, but this is shifting. Patients are far more involved in their healthcare. Living longer with chronic long-term conditions means that an approach whereby patients take greater responsibility for their health and healthcare can lead to better outcomes. There are no ‘magic bullet’ solutions but having record access and understanding combined with a ‘partnership of trust’ with the lead clinician can lead to safer, more efficient and productive services. We use an online Records Access and Understanding Safety Checklist questionnaire before signing people up to online services. It includes a safety checklist which helps patients to understand the facility they are signing up to. We have safeguarding policies and procedures in place to help protect vulnerable patients as well and this is part of the comprehensive safety we offer all our patients and staff.’

This seems like a sensible approach to online care and making sure that online care becomes an additional and valuable tool and resource that can be used to enhance patient care rather than a substitution sounds beneficial to many. However, there will still be challenges to face in implementing this technology. Some patients are living in an environment of manipulation, exploitation and coercion from the people who may be closest to them. It has been suggested that under these circumstances having ‘electronic personal health records’ available at home could compromise the healthcare of a substantial number of people.

Approximately one in three people will experience abuse in their lifetime. Those in abusive relationships tend to visit their GP more frequently than the general population as they have more mental and physical health conditions. Their abusive situation is rarely visible to the medical practitioners as it operates under the dynamics of coercive control and could be under the guise of a carer or an attentive partner. Identifying domestic abuse and understanding when someone is really consenting, rather than complying to record access will be a complicated task for any healthcare professional. To make this already complex situation even more tricky is the issue that many people do not realise they are in an abusive relationship, and that the person that they trust has an agenda of undermining and exploiting them.

‘Patient Access’ has been advertised on electronic screens in surgeries as a ‘safe way to share your medical information with family.’ For anyone sat in a waiting room with an abusive partner, a message such as this would make it incredibly difficult to keep personal records private. Perhaps marketing ‘online healthcare’ as a private facility, to only be shared in exceptional circumstances, could help reduce the risk to patients. Well-developed password security may be beneficial. Domestic abuse awareness in practices and an attempt to gain a fully understood and informed consent could also reduce risks. One size does not fit all and having a patient-centred approach will be essential in creating a safer implementation process.

Most people involved in the application of these policies and technological advancements will be trying to manage the delicate balance of safe, efficient and cost-effective healthcare for a diverse range of needs, which will vary across time and locations. For some patients, face-to-face contact with health professionals may literally be a ‘lifeline’ to support. With increasing technological dependency and home prescription deliveries, it’s important to make sure that potentially vulnerable patients do not become further isolated. Making sure that technology does not threaten the ‘safe space’ of confidential and private healthcare appointments is a challenge for the future.

© Sarah Blake, 2018

(A massive thanks to Dr Amir Hannan for sharing his views and expertise on this subject)

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