Staff and patients described online access primarily providing a more convenient way for patients to view information about their health care. Patients reported that this enabled patients to check test results and treatment plans, and to remind themselves about the content of previous consultations. It also occasionally equipped them to challenge their GP or take more control in subsequent consultations. For example, as one patient explained:
‘My last consultation […] I just took him [the GP] a list of about fifteen questions about my condition [… record access has] certainly helped me to ask more questions or to know a bit more about [my condition]. ’
(Patient [P]2, Practice [Pr]6)
Unintended consequences
Patients and staff highlighted unintended consequences of online access that challenged the intended goal of supporting patient ‘wellbeing and independence’, and enabling their ‘genuine involvement’ in their health and care (see the definitions of intended consequences above). First, some patients described discovering information in their health records that had surprised and distressed them, and which their original consultation had not prepared them for:
‘I went onto the patient record […] to look for if any of the blood test results had come back [… and it] said, “urgent referral request: suspected breast cancer”. […] You’re instantly like, “Christ! The doctor thinks that I’ve got breast cancer.”’
(P1, Pr2)
GPs and administrative and managerial staff had little awareness of whether patients experienced this kind of unintended consequence, despite their concern that online access could cause patients distress if they learned something of which they were previously unaware.
Second, patients noted that simple access to information did not necessarily equate to greater involvement or better management of their own health and care. Some patients explained that ‘sometimes too much information can be unhelpful’ (P1, Pr2) or that ‘a little bit of knowledge is a dangerous thing’ (P2, Pr10), especially if they did not have sufficient context to interpret it, and searched online about the ‘disadvantages or drawbacks’ (P2, Pr6) of a condition. One GP described a conversation with a patient who no longer wanted online access because they did not want to read about their growing medical problems:
‘There were two or three things that [the patient] had to remember [following the consultation] and so for me it’s always been natural, “just go online and check so you can remind yourself”. […] And she was like, “Oh, I don’t really look at my records any more”, I said, “Why not?” “Well, because I don’t want to … I’m scared of seeing something that means I’ve got another problem on top.”’
(GP1, Pr9)
Third, GPs suggested that information in the record was not tailored to the needs of patients, which could lead to misunderstandings or misinterpretation. For example, GPs noted that patients could struggle to interpret test results, particularly when clinically unimportant information was also visible. GPs thought that their own documentation practices could be a source of difficulty for patients, explaining that consultation notes were written using abbreviations, jargon, and in a time-constrained context where accuracy of spelling was not always prioritised:
‘There’s a heck of a lot of spelling mistakes we make in our notes. [A patient] who requested all her notes, I did have that conversation with her, I said, “There will be lots of spelling mistakes and things” and forewarned her.’
(GP1, Pr4)
Fourth, online access could have wider medicolegal or patient safety consequences when concern about how information might be interpreted by patients affected the content of consultation notes. For example, some GPs described the difficulty of recording their concerns in notes that would be visible to patients:
‘[If] you’re worried about domestic violence or drug use or something like that and you’re not necessarily firm enough, you might have tried to explore it [… but the patient is] coming in and doctor hopping […] you can put on a note [in the record] to that effect […] but you know I’d be very wary of doing that now. I might go and phone the [other] doctor myself if I know they [the patient] were coming in and have a chat with them [the doctor]. But I definitely feel you have to be careful about what you’re putting down in the record . ’
(GP1, Pr10)
Notes about possible diagnoses or GP ‘gut feelings’ were described in similar terms: such speculation was thought to leave ‘hostages to fortune’ (GP3, Pr1) if made visible to patients, particularly when the pressures of consultations meant that it was not possible or practical to discuss an issue thoroughly with them. In these cases, speculative but important information was either not documented or shifted to less formal channels.
GPs suggested that mitigating all four kinds of unintended consequence could be achieved through their already cautious and transparent documentation practices. GPs described how their notes were ‘factual’ (GP1, Pr4), ‘objective [and] defensive’ (GP2, Pr2) to minimise potential issues for patients viewing them. One GP explained how they write notes without jargon to aid patient understanding:
‘[For a female patient] for instance, [the] instructions I wrote was [ sic] written in a way so I knew if she reads it she will be able to understand, rather than using shorthand . ’
(GP1, Pr9)
Another GP described how they had adapted the terminology they use: avoiding ‘normal’ in test results and instead calling statistically abnormal but clinically normal results ‘satisfactory’ (GP1, Pr2) to avoid confusion. GPs also gave examples of writing notes transparently and jointly with patients by explaining to patients what is being documented as they write it:
‘I do transparent practice, so [I] verbalise what I’m finding with patients, I verbalise what I think is going on in my records, I will only put “my impression is this”. […] So I’d hope that you’re not going to get things back in your face . ’
(GP1, Pr8)
