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Nurses can help service users to access their health records and ensure the information is handled in their best interests
Personal clinical information is increasingly held electronically, making it easier for clinicians to share when coordinating care. And while patients can request sight of their personal information and ask for it to be corrected, information-sharing can prompt concerns among some, especially mental health service-users.
Nursing Management. 29, 2, 11-12. doi: 10.7748/nm.29.2.11.s4
Published: 07 April 2022
Healthcare professionals are not necessarily aware of such worries. Research shows service-users may be uncomfortable sharing mental health information because they fear discrimination. For example, in accessing physical health services, individuals may worry that clinicians will treat them differently or restrict their ability to access care and treatment if aware of a mental health diagnosis.
Nurses and other clinicians working in physical healthcare, such as emergency departments, may misunderstand or lack experience in supporting an individual with a particular diagnosis. These misunderstandings may result in the use of stigmatising language to describe an individual’s behaviour, such as ‘challenging’ or ‘difficult’ or defining them as a ‘self-harmer’.
Research shows that stigmatising language can perpetuate bias and subsequently influence attitudes towards the individual.
Individuals may also worry about the impact of sharing mental health information on employment possibilities. Indeed, studies indicate a significant proportion of managers have concerns about employees with mental illness, most notably in terms of workplace productivity and risk of long-term sickness.
It is not surprising, therefore, that, to many service users, personal information is not an innocuous term, but rather a potential impediment to employment.
As a mental health service-user myself, I was extremely fearful about my clinical record and censored my experiences, especially to do with self-harm, when talking to occupational health for fears it could be used against me to prevent my working as a nurse.
Service-users may also be concerned about the accuracy of information. Misdiagnosis, or even a diagnosis that the individual does not agree with, is one example.
My International Classification of Diseases (ICD-11) diagnosis was listed as ‘mixed anxiety and depressive disorder’ but retrospectively I believe my diagnosis to be post-traumatic stress disorder. This misdiagnosis did not limit my ability to access appropriate care but makes me uncomfortable because it does not reflect how I understand my experience.
For those with complex or severe mental health conditions, whose diagnosis may guide or impede further treatment, such inaccuracies can be harmful.
Researchers have shown that similarities in how bipolar disorder and borderline personality disorder (BPD) present have resulted in many individuals being misdiagnosed with bipolar disorder when they actually have BPD.
Health professionals will plan and coordinate treatment on the basis of this information and only question it if further evidence comes to light.
Given mental illness can involve lack of insight – and social attitudes err towards controlling people with mental illness – clinicians may not always consider the individual’s viewpoint should they question a diagnosis.
This may undermine the service-user’s trust, making them believe they are not being taken seriously or being offered the care and treatment they need.
Nurses should be aware of their role in supporting a patient to complete a subject access request to have a copy of their clinical records. The form can be accessed on the website of the NHS organisation, completed and sent to the relevant office, as indicated on the form.
There are certain exemptions to disclosure, for example if the information is deemed likely to cause serious harm.
The office receiving the form has 30 days to reply and provide the records. Service users should be supported to contact the office if there is a delay. In addition, nurses should be aware of how clinical information is accessed, and support patients to have the same knowledge.
Clinicians are repeatedly told of the importance of information governance and the general information protection regulation, including the Caldicott Principles, which should always guide information storage and handling.
Health and social care professionals should have the confidence to share confidential information in the best interests of patients and service within the framework, as one of these principles states. However, many nurses do not always see how the clinical record relates to the reality of an individual’s situation.
It is not that they do not care. It may be that, if they haven’t experienced a mental health crisis themselves, they cannot see what the information stored in clinical records represents to the service users – challenging experiences that invoke feelings of vulnerability and exposure.
In reflecting on this, nurses should consider the language they use in documentation as well as how they access and handle clinical records.
The electronic health record pertains to a whole person with a rich individual identity, who has a past and future outside mental health services, who will be aware of and reflect on their mental ill health. Being a patient is only a tiny part of who they are.
This is an abridged version of an article at rcni.com/electronic-health-records
» Information on completing a subject access request (SAR) will be on NHS intranet and/or websites
» The SAR form can then be printed out and completed and the individual can specify details of the records they want to access
» The patient will require a witness, who is not a family member, to sign the form
» The form can then be sent via email or post to the health provider’s data protection office
Adanijo A, McWilliams C, Wykes T et al (2021) Investigating mental health service user opinions on clinical data sharing: qualitative focus group study. Journal of Medical Internet Research Mental Health. doi: 10.2196/30596
Information Commissioner’s Office (2022) Preparing and Submitting Your Subject Access Request. tinyurl.com/ICO-subject-access-request
NHS (2022) How to Make a Freedom of Information (FOI) or Subject Access Request. tinyurl.com/NHS-FOI-request
National Data Guardian (2020) Guidance: The Caldicott Principles. tinyurl.com/NDG-caldicott-principles
Park J, Saha S, Chee B et al (2021) Physician use of stigmatizing language in patient medical records. Journal of the American Medical Association. doi:10.1001/jamanetworkopen.2021.17052
UK Caldicott Guardian Council. tinyurl.com/Caldicott-Guardian-Council
