Three themes were generated: (1) Information – what, why and when? (2) Changing behaviours and protecting relationships, and (3) Secure access and safeguarding (see Fig. 1). The emotional considerations and consequences for staff and patients featured prominently in the data and we therefore consider this to be an overarching theme, reflected within all four themes. We present a descriptive account of the themes with supporting excerpts below.
Theme: information – what, why and when?
Staff recognised the potential benefits for patients and the practice resulting from increased patient access to EHRs, however, there was a great deal of discussion about what information could be viewed in the future if current access was expanded and if uptake became more widespread. These discussions were predominantly focussed around three areas: the level of information, the use of information and historical information.
Level of information
Regarding the level of information, staff expressed a greater degree of comfort with the prospect of patients viewing coded as opposed to free text information:
‘Um, it’s a good thing, so that they know exactly what’s happening. I think they should be able to see most of the stuff but not the, the free text information because, quite often that can be doctor’s thought process down on there…’ GP Partner (Focus group 1)
Nonetheless, it was acknowledged that at present, even certain coded information might not be in an accessible format, and this could result in misinterpretation:
‘I think as well some of our coding is a bit out of date, so I find when I am going through like my post-natal checks, that I am tidying up if you like the major coding and…where I am just kind of like “oh that doesn’t need to be there” and I think there might….I think our notes aren’t necessarily tidy enough in some respects just because of the way things have been coded in the past..’ GP (Focus group 3)
The use of information
Staff reflected on the potential benefits for patients in terms of how information could be used. For example, patients having the option to access their records might mean that information to support benefit claims and travel insurance applications could be obtained more efficiently. This type of use may have the additional benefit of reducing the staff workload typically associated with these types of requests, but could also have the unintended consequence of increasing patient uncertainty.
Staff generally viewed the opportunity for patients to highlight errors in their EHR favourably, and gave specific examples such as current medication and allergy status. However, it was acknowledged even highlighting these types of errors might not be straightforward due to differences in perceptions between patients and healthcare staff regarding what an error is:
‘I think when you mention the allergy thing, that’s quite a good one cos in both ways, so sometimes you have things on their, coded, like, where it says they’ve got an allergy but actually it was, they didn’t, it was they were it was vomiting or it wasn’t really an allergy or for some reason it’s not, and it might prevent them having an antibiotic that otherwise could’ve been really useful if they get a chest infection or something else, and equally there might be something missing on there and it might be a severe allergy. So that sort of thing would be really useful if patients could see that and could notify us of any problems there.’ F2 (Focus group 1)
Much discussion centred on how access to EHRs might be more beneficial for particular groups of patients in the context of safety implications, such as those with a long-term condition or a complex medical history:
‘… I think to know whether something’s safe you need to know what is expected. So that you should have you blood pressure done every year, so you’d need a list of, I should have my cholesterol done and my… these bloods done and my blood pressure done every twelve months, or if you were diabetic your foot check and all those kind of things. And if they then checked whether they’d had them or not...’ GP (Focus group 2)
‘I can see some benefits for certain patients, you know, having their medical records if they’ve got a complex medical story, urm, and having access to information from the past and then, you know, a lot of the time, you know there’s a thing in there, you know, I’ve had this condition for twenty years and you’ve been to a one hour lecture on it, who knows my condition more, the patient will say that...’ GP Principal (Focus group 4)
The prospect of historical information becoming visible to patients a significant amount of time later was a key concern raised by staff, for example, there were specific concerns about the use of out-dated terminology. When staff considered these issues, it was clear there was the potential for this to cause anxiety not only for staff, but for patients too.
‘...I think I worry about them being able to see what has been written in the past when we didn’t know when they would be able to access there, erm because it is easier to be a little bit more mindful about how you might write something, you might still write the same information but you might write it just in case they saw it in a way that was more tactful or something like that because you didn’t have that opportunity in the past, erm so that is of concern...’ GP (Focus group 3)
‘...I’m personally fearful, I think it’s a really good idea giving patient’s access to their information, you know, it’s not our information it’s theirs and it relates to them.... I’m very fearful about the consequences on workload with people going through records and coming in complaining about some entry that we made years ago or recent entries that there’s a misinterpretation.....So the actual factual information of a medical record, this is somebody’s story, these are the events that have taken place in their lifetime, this is their bloodgroup, this is their allergies, all that sort of stuff I can see the benefit of. The actual bit about, the, the sort of handwritten notes in effect, just not so sure necessarily how that, urr, can only cause problems really, personally....’ GP Principal (Focus group 4)
Theme: changing behaviours and protecting relationships
Staff described how increased patient EHR access could result in changes to staff and patient behaviours.
Prompts, reflection and monitoring symptoms
Even subtle changes to staff behaviours in their approach to recording information was said to have the potential to create safety issues. For example, staff described how they often log their general reflections of a consultation to have a record of their thought processes, which may have negative implications if this behaviour of logging reflections were to become restricted. In addition, these notes of thought processes were said to be an important means of communication between staff, often providing additional contextual information and observations, necessary for appropriate actions to be taken. This was viewed as particularly crucial for effective monitoring of symptoms:
‘It would more, it would cause more problem, if patient can see the, the everything, like the consultations, because I see it as consultations are quite often our thought processes, like this person has a cough for two weeks, if, but has also this as well, they come back I’ll refer the person for, if I put that on then that, and they read it …that automatically that pushes the anxiety of, cos like it’s my thought process but I need to put it on there so that if it’s not me who is seeing the patient next week or the week after they can pick it up and then they do something about it and so it’s just a thought process, but that can lead to significant distress'.’ GP Partner (Focus group 1)
‘I guess it is a bit frightening really, I feel, them reading everything that you document and whether they are going to question what you are writing, you have to be really careful what you write’. Advanced Nurse practitioner (Focus group 3)
Information being recorded in patient notes as a means of protecting professional reputation was also touched upon:
‘… Yes difficult consultation, long consultation you know and we need to be able to write things that might protect us if things went wrong and there was a complaint or a negligence complaint or something like that and you know so it is important that we write down that we weren’t able to engage with the patient because of this reason very well and you know we tried our best and things like that, which we don’t write in those terms but we will write things like it was a difficult consultation because they had lots of agendas that they wanted to discuss and we wanted to discuss these and things, and then if they read that sort of thing they would probably have a very different perspective on it and would not like to see that we have written those kind of things but they are important for us to write down for our own protection really erm'. GP (Focus group 3)
Unintended consequences – changing patient behaviour
Furthermore, staff worried that patients may limit the information they provide in a consultation through fear of it being on their record in case other people, such as family members, are able to access this. Again, this limiting of sharing information by patients was described as having potentially serious safety implications:
‘.....then you don’t really know, do you? No one’s ever going to feel safe of coming to the GP practice and saying actually what is the problem or what’s wrong if they’re going away from family members to come here to, like, disclose something, it’s not going to really stay between, within the room is it?’ Administrator (Dyadic interview)
‘.....people can ask you why you’ve put something. In fact, somebody today I was just saying to her no one is going to read these records except you and me because she didn’t want me to put that she was stressed....... but people have this paranoia that the big world out there is going to…’ GP (Focus group 2)
Rapport, relationships and sensitivities
Of huge concern to staff was the potential for expanded patient access to EHRs to negatively impact their relationships with patients. Staff described how it was plausible that relationships might be affected due to the communication/recording of information changing. For instance, expanded patient access might lead staff to be less specific in their notes and reflections which they regularly rely upon to ensure a good rapport in consultations:
‘.....Be less specific, but I don’t think that is helpful because it acts as a really good aide memoire to me that builds my relationship with the patient because I can start the conversation by going “how is your daughter”? “how are they getting on with such and such”?’ GP (Focus group 3)
Staff generally viewed increased EHR access favourably, for instance – patients being more informed about medications and conditions, however, staff were also concerned that increased access might give rise to friction in the patient - health professional relationship, particularly when patients disagree with information in their record:
‘Yes in terms of the way you have interpreted something that we have written or as you say some things that they perceive as not being recorded accurately or not, but equally erm it may allow them to be on the same page as us and more trusting so I think there pros and cons of that as well.’ GP Partner (Focus group 3)
Specific examples were provided where misinterpretation or disagreement from the patient point of view could be detrimental for rapport and patient - health professional relationships, such as allergy coding, and coding relating to alcohol and mental health conditions:
‘Participant 4: Or the coding that we use for alcohol. So we have all sorts of codes for that, problem drinker, alcohol dependent you know
Participant 3: Alcohol abuse
Participant 4: Alcohol misuse, all sorts of things and I can imagine that that could be a whole can of worms and could become quite awkward so…’
Participant 4 - GP Partner; Participant 3 - Advanced Nurse Practitioner (Focus group 3).
In terms of providing feedback via online practice portals, staff felt patients should have the option of providing this anonymously if they prefer. Even so, staff recognised that by providing feedback about care experience via such online portals, even though anonymous, patients may still worry this can be linked back to them in some way and therefore be reluctant to provide feedback:
‘Yeah and I guess some people, people want to sometimes be anonymous in their feedback and that way it would be, it’s clear who’s given that feedback so it might mean that they don’t openly give feedback through those things.’ F2 (Focus group 1)
Theme: secure access and safeguarding
There was extensive discussion and concern surrounding secure access and safeguarding, in particular – how patient confidentiality could be ensured. Much of the concern stemmed from problems that may arise should access not be secure.
Secure access and verification
Staff commented that although robust systems could be in place for the initial set-up of patient access to their EHR, such as identity checking and other verification/authentication processes (e.g. NHS Login), it is not always guaranteed who will have access subsequently:
‘Yeah, but it’s like if we’ve done the online thing here, you’ve given them the records but we don’t know who’s actually going to access those records. There’s no, you know, who have they given that password to and who they’ve given that online access to, because it could be anybody couldn’t it?’ Practice Nurse (Focus group 2)
Staff also noted the need for a secure verification process to be in place when patients update information online or highlight EHR errors:
‘.... So if they’ve changed address or, urm, changed their contact number or something. With address we do prefer to have some form of proof, so we, ideally we like them to bring in some kind of proof, but sometimes like if it’s a young mum or something they might have seen the health visitor which they might have seen the proof of update in which case then we’d accept it, cos you know health professional has, has seen the proof, so we’d accept it...’ Office Manager (Single interview)
Staff identified patients who might be more vulnerable in terms of safeguarding and EHR access, such as in cases of domestic abuse, family separation where children are involved, patients with a mental health condition and elderly patients. The possibility of coercion and/or control was frequently cited within the discussions:
‘.... but I think there’s an element of… not… coercion’s the wrong word isn’t it? But there’s sort of an element of control and stuff within families and stuff that that’s what you do and… you know, and older people as well. So, you know and that’s fine if that’s, that’s what they want to do and often a lot of us look after our older relatives and older stuff and do stuff, but that step, next step is that you want to go delving around in their notes… urm… I think that you just have to be careful about people who are vulnerable, yeah, and people who can’t read and write…' GP (Focus group 2)
Equitable access was also discussed. It was recognised that many patients rely on family members when accessing online practice services, and this reliance could compound issues of coercion and control. For example, some patients may not have the digital skills to enable then to engage with digital devices:
‘...they’re not literate with the computers, so they’re dependent on other household members, which means that, you know, they’re going to wait for their son, their grandson, granddaughter, it could be anybody, any member of the family, but it depends on whether they’re going to give them that time to be able to access…’ Practice Nurse (Focus group 2)
Further examples were provided, including patients whose first language is not English, and patients who may not be able to read and write:
‘.... And also, it’s sharing your records then with somebody else, I mean, often they come in with somebody else here, but we have interpreters here all the time. So actually, anybody could come in by themselves and not have to bring a family member. Whereas, I suppose if they don’t read and write…’ GP (Focus group 2)
‘...of what they’ve found and it could be, I think it could be quite dangerous in that way, because there might have been something that’s mentioned within, within her notes, um, and it could have a detrimental effect on the patient whose notes they are that’s the access is actually… well, because she doesn’t know what’s been, cos if, if she can’t read and write, um, and then it’s husband, it could be a father in law, son, it could be anybody, that’s actually, and so it’s a third member of the family that’s actually looking into the notes.’ Lead Practice Nurse (Focus group 2)