‘Getting it Write’: Patients and carers’ understanding and responses to clinicians’ notes in a new era of online access to primary care health records.
Problem
Most patients in England now have online access to all new entries, including free-text, in their primary care health records through platforms like the NHS App or other online services.Studies on providing patients with online access to their health information show potential to improve health outcomes and patient safety. Expanding patient access to health records can also enhance health literacy and engagement, particularly for marginalised populations who may have most to gain from online access. Currently, patient health records are mainly used by clinicians to record clinical information to provide safe and effective care, and were not designed to meet the needs of patient audiences. Clinicians do not receive training in adapting consultation notes for patients. This increases risks of poor communication which can cause misunderstandings, unintended offence and anxiety. This can impact on patient safety and put more pressure on primary care services. To maximise benefits and avoid harm to patients, consultation notes must be clear and meaningful for patient audiences while still including necessary clinical details for safe and effective care.This study aimed to explore how underserved patients and carers may respond to reading consultation notes and to identify what they may find difficult to understand or cause unintended anxiety or offence.
Approach
We conducted interviews and focus group discussions with 26 patients from underserved communities including: young people, older patients and carers, patients living in areas of significant deprivation, patients with English as an additional language or who identified as LGBTQ+. Participants responded to vignettes about fictional patient consultation scenarios and assessed the clarity of corresponding simulated records. Participants were then asked to identify potential comprehension issues, offensive content, or anxiety triggers. Finally, patients were asked what types of help and resources may help to support improved patient understanding and relationships with healthcare staff.
Findings
Most participants struggled to understand a large proportion of fictional consultation notes, particularly medical acronyms, clinician shorthand, and non-clinical abbreviations. Participants also identified issues which may cause unintended offence or additional anxiety. Participants considered that most patients will struggle to fully understand the content of their consultation notes in their current format. They made a number of suggestions about how this service may be improved to meet the needs of patient audiences and maintain positive patient-clinician relationships. These findings were subsequently presented to healthcare professionals as part of the next phase in the study.
Consequences
To optimise NHS investment in this policy and avoid worsening health inequalities, it’s essential to ensure a clear path toward benefiting patients. Providing robust support for healthcare professionals in navigating the complexities of crafting consultation notes, alongside measures to maximise patient understanding, are needed to ensure safe and effective policy implementation.