Practice and participant characteristics
Interviews were conducted before April 2020, so practices that participated were not yet obliged to offer full-record access to existing patients. Characteristics of the 10 practices are shown in Table 1 and 29 participants interviewed in Table 2.
Table 1
| Site | Patient list size* | IMD quintile** | Location | Level of patient online access to health records *** | No. staff interviewed | No. patients interviewed |
| 1 | Medium | 5 | Urban | DCR | 1 | 1 |
| 2 | Small | 5 | Urban | DCR | 2 | 5 |
| 3 | Medium | 5 | Rural | DCR | 2 | 0 |
| 4 | Large | 2 | Urban | Full record | 4 | 2 |
| 5 | Medium | 5 | Urban | DCR | 0 | 2 |
| 6 | Small | 5 | Rural | Full record | 0 | 1 |
| 7 | Small | 5 | Urban | DCR | 1 | 0 |
| 8 | Large | 2 | Urban | DCR | 2 | 0 |
| 9 | Medium | 2 | Urban | Full record | 1 | 0 |
| 10 | Small | 4 | Urban | DCR | 3 | 2 |
| * small < 10,000; medium 10-15,000; large 15,000+ |
| ** IMD =Practice location Index of Multiple Deprivation. 1=more deprived, 5=less deprived. (https://www.gov.uk/government/statistics/english-indices-of-deprivation-2019) |
| ***DCR= Detailed Coded Record |
Table 2
Participant characteristics
| Characteristics of patients | n = 13 |
| Sex | |
| | Female | 9 |
| | Male | 4 |
| Age | |
| | 30-54 | 2 |
| | 55-64 | 9 |
| | 65+ | 2 |
| Ethnicity | |
| | White British | 13 |
| Characteristics of GP practice staff | n = 16 |
| Sex | |
| | Female | 8 |
| | Male | 8 |
| Staff role | |
| | GP | 10 |
| | Administrative/Managerial | 6 |
| Average no. years GP qualified | 21 |
Table 1: Practice Characteristics
Table 2: Participant Characteristics
Findings are presented according to the pre-defined intended consequences (see above), illustrated with anonymised verbatim quotes. We note how the intended consequences were achieved, before considering unintended consequences.
Intended consequence 1: Improve autonomy and enable patients to take greater control of their health
Staff and patients described online access primarily improved patient autonomy by providing a more convenient way for patients to view information about their health care. Patients reported that this enabled patients to check test results, treatment plans or remind themselves about the content of previous consultations or 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 15 questions about my condition [… record access has] certainly helped me to ask more questions or to know a bit more about [my condition]” (Patient-2, Practice-6)
Unintended consequences
Patients and staff highlighted unintended consequences of online access that challenged the intended goal of improving patient autonomy, in the sense of supporting patient ‘well-being 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.” (Patient-1, Practice-2)
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 online access did not increase autonomy, in the sense 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." (Patient-1, Practice-2) or that “a little bit of knowledge is a dangerous thing” (Patient-2, Practice-10), especially if they did not have sufficient context to interpret it and searched online about the “disadvantages or drawbacks” (Patient-2, Practice-6) 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 anymore’, 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’” (GP-1, Practice-9)
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.” (GP-1, Practice-4)
Fourth, online access could have wider medico-legal 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” (GP-1, Practice-10)
Notes about possible diagnoses or GP “gut feelings” were described in similar terms: such speculation was thought to leave “hostages to fortune” (GP-3, Practice-1) 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” (GP-1, Practice-4), “objective [… and] defensive” (GP-2, Practice-2) 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 written in a way so I knew, if she reads it, she will be able to understand, rather than using shorthand”. (GP-1, Practice-9)
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” (GP-1, Practice-2) 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”. (GP-1, Practice-8)
Intended consequences 2: Improve the efficiency of care or improve practice workload
The primary way that staff found patient online access to their health records improved practice workload was by shifting the responsibility for producing copies of medical records. Instead of practices printing out copies (possibly multiple times), staff and patients highlighted the efficiency of allowing patients to extract information themselves when they pleased.
Unintended consequences: efficiency of care and workload
Patients appreciated the convenience of being able to view their record when they pleased, but beyond this they did not comment on the efficiency of the care they received. Consequently, the unintended consequences below focus on staff experiences of five kinds of addition to practice workload.
First, the preparation of records before giving patients access added to staff workloads. Preparing records included tasks such as redacting sensitive information (that is, information that “would be a risk of harm to […] the patient or somebody else” (Admin-1, Practice-4)) and references to third-parties (such as individuals other that the patient who can be identified from information in the record).
“We certainly all anecdotally talk about the work that it’s created with many of the admin staff having to go through and take out third-party references and things. Giving patients ownership over their health can be a good thing, but it can also generate work in other ways.” (GP-1, Practice-4)
Although software was sometimes available to help, this “only solve[d] part of the problem.” (Admin-1, Practice-7) and manual checking was often needed.
Second, online access increased workload when clinical staff provided support to patients requesting access. In these cases, supporting and “preparing patients” (GP-1, Practice-9) was necessary to help patients know what to expect, and avoid misunderstanding and surprises. Some GPs provided patients with information leaflets or questionnaires, but there were also instances where GPs had arranged a face-to-face consultation with particular patients, so they could go through important parts of the record together.
“I had a patient who had quite a lot of terrible things [happen] to her in her childhood [...] she wanted online access and so when she requested it […] I said, ‘You are going to have online access. What I think would be good if we go through your record now’. [… The record was] not that massive and I just went through the problem codes with her so that she could see what they were and that they made sense to her.” (GP-2, Practice-4)
Third, additional workload was also generated when managing access to records of teenage children (around 13 years). For example, situations that generated extra work included: practices being asked to redact comments in the child’s record that parents do not want the child to see (or vice versa); allowing access for parents who have separated; and parents requesting access to a child’s record. As well as creating extra administrative work, some situations also meant navigating tricky conversations with parents and children. For example, at one practice where parental access ended when a child turned 13 years of age:
“There have been a couple of occasions when that’s actually been really quite difficult, where the kids find themselves in a difficult position of parents saying, ‘well why can't I have access to the notes?’ And you say, ‘well it’s set up for your child to say whether you have this or not’ and the parents will say, ‘well they won't mind, that will be fine, of course it will’, the child is there and you can see the child squirming [...] If you know the situation, you can actually engineer [a way out of] it, but sometimes that can be quite noisy and quite difficult.” (GP-1, Practice-2)
Fourth, staff recognised risks around online access for patients experiencing domestic violence and abuse and described the difficulty of ensuring that access would not cause harm if perpetrators viewed their partner’s record. An unintended consequence of online access therefore was the additional work undertaken by staff to minimise harm, such as, considering requests on a case-by-case basis and attempting to see the patient alone, face-to-face, to confirm access requests were from them and for them.
“[domestic violence and abuse is] one of the reasons why the process [to get access] is a bit more long-winded now [… a consultation in advance allows] the GP to speak to the patient and that’s kind of why we want the face-to-face because they can be alone in the room […] the GP just needs to make sure that they actually want the access themselves and it’s for them.” (Admin-1, Practice-4)
Fifth, once online access was available, staff described unintended additional workload from managing and monitoring access, such as queries from patients challenging information or finding errors in their record that required correction. Staff noted that genuine errors were typically easy to amend, whereas patient disagreement with otherwise appropriate codes had the unintended consequence of generating “difficult discussions” around topics such as obesity.
“people don't like to see things that may be negative about themselves […] we do tend to find it’s the obesity stuff that they [patients] object to” (Practice Manager, Practice-10)
Although Online access generated practice workload in a range of ways, staff sometimes down-played the impact of online access because access requests were processed on an ad hoc basis, and therefore spread out, and patient uptake was relatively low at the majority of practices.
“I didn’t really see that it was going to be that great a change and in our experience it hasn’t been that great a change. It’s still a very low number of patients that want to see their notes and records, or have access to them, in fact we had difficulty convincing patients to sign up.” (Practice Manager, Practice-4)