E22 Remote Patient Access

NOTE:  THIS TRANSCRIPT WAS PARTLY PRODUCED USING AI, AND IS LIKELY TO CONTAIN ERRORS!

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Why we might be worried about this

[00:00:06] Munir Adam: It's August, 2023, and a significant change in primary care is imminent: Patient access to their medical records. And this episode is both timely and urgent. Have a listen to this message from our speaker. 

[00:00:20] Devin Gray: If this is a subject you've not had a chance to engage with yet, then now is the time. The deadline to act on this is sooner than you think. For EMIS practices, you must sign up by the 20th of September latest, to the last switch on date, which is on the 4th of October.

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[00:00:38] Munir Adam: Welcome back to Primary Care UK and we're continuing season two, which is produced in collaboration with Integrated Care Support Services.

[00:00:46] Now, you may or may not agree with me, but while consultation skills have always, or at least for a very long time, been given incredible importance in UK healthcare, and quite rightly so am I might, add the same cannot be said of the way that discussions are captured.

[00:01:02] There are important reason for documenting consultations: having an accurate record of what actually happened, something about continuity of care and so on. But for many of us, the only time we actually end up scrutinizing this is normally when we receive a complaint. Oh, why didn't I write this? Why did I write it in this way or that way? And you know what they say, if it isn't recorded, it didn't happen.

[00:01:25] So we start to think carefully about making documentations medical legally sound. Well, now we need to think about all of this from a different perspective. That is patients access to their records. Not that they couldn't access records before, but it's one thing to have to go through a whole process to get your medical records. It's quite another, if an up-to-date version of it is readily available to you all the time. This could create all sorts of anxieties you see, health is one of the most important and most personal things in one's life. So if the documentation isn't in their view, an accurate record of the discussion about their health, or at least their illnesses, then they may well challenge it.

[00:02:07] In fact, when you think about it, it's actually very complex trying to capture the information and the same information can be written in so many different ways. So it's quite worrying when you think about it like that, isn't it? Be honest, when did anyone ever teach us about how to do it properly? 

[00:02:24] Well anyway, rather than pretending it doesn't matter, I decided to find out from Dr. Devin Gray, who is someone who has been much more involved with this for quite some time, and I have to say she did impart some really useful advice, a lot of it being backed up by her discussions with the MPS or Medical Protection Society. 

[00:02:42] So what exactly is happening about patient access to records? What do practices need to do and how do we document more appropriately? Clearly, not only is this episode extremely important to all clinicians, but also for practice managers and others involved in management. So stay tuned. 

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[00:03:14] Munir Adam: Devin, it's kind of you to join us and to discuss a topic that does cause me to shiver a bit, actually, and I'll tell you why in a minute. But do you wanna start by introducing yourself. 

[00:03:24] Devin Gray: Absolutely. Thank you for having me. My name's Devin Gray. I'm a salary gp. And I'm also clinical lead for the digital first program in Wandsworth.

[00:03:34] But I've been supporting the records access program across the ICB, and in some parts nationally too, through N H S England and the National Safeguarding Networks. Okay. And I'm passionate about helping to prepare primary care organizations with this topic. So I'm looking forward to this conversation today.

[00:03:51] Munir Adam: How did you start getting involved with it though, and, and why? What drew you towards this? 

[00:03:55] Devin Gray: One of the reasons why I focused on records access, uh, last summer was because there was really just, so obviously a clear gap in support. Oh yeah. For this, when it was rolled out, there was no funding, lots of concerns about how it was being rolled out, so I was really motivated to be as informed as possible so that I could support practices in getting their head around it and prepare for what was clearly coming eventually.

[00:04:20] Munir Adam: Hmm. I would totally agree with you when you mentioned about there being a gap, certainly the conversations I've had with different practices, It does look like people feel very unprepared and they're not really sure what's the best way to respond, and then different people are saying different things.

[00:04:33] And as a frontline clinician working in primary care, I. I'll tell you why now it caused me to shiver a bit. I started to ask myself, oh my God, if patients are now gonna be able to access everything that I've ever put on their record, have I always put the right thing? You know, have I said things in a certain way that's going to upset them, confuse them, create anxiety.

[00:04:52] You know, is that gonna get me into trouble? And I guess a lot of people must be asking those sorts of questions as well, and perhaps connected with that, look, um, solicitors, right, they use legal jargon and engineers that have their own language of speaking and so do mechanics and DIYers, and so there was medical jargon.

[00:05:11] Does that change? Is it a good thing that things are moving in that direction? 'cause presumably access to records means that we've gotto all start using a different language when we start doing this? Otherwise, they won't have a clue what we're talking about. So, yeah, perhaps a combination of the worry that I have and also whether there's some sort of cultural change in what's expected of us and, and are we losing something?

[00:05:31] And so, so it leads me thinking, is this a good thing? What would you say to that sort of feel? 

[00:05:36] Devin Gray: I mean, l lots to unpick there and, and all very familiar to me with the conversations that I've been having with primary care staff over the last year or so. I think the first one actually is to pull out a myth that's very commonly held, which is that this is about all records access, and actually this program is just about access to records that are going to be written, not that have already been written. 

[00:06:01] Ah, okay. So we don't need to be concerned about what's already been written in the notes at this point. Now I'm gonna caveat that with, patients have had the right to ask for their notes for a long time now. And so we have been told for some time that we do need to think about what we're writing in the notes because at any stage, a patient does have a right to ask for those.

[00:06:22] And unless we can show that they would be at significant risk of harm for reading those, we need to release them. It takes up a lot of time in general practice particularly when it involves more complex patients, more complex records. So this program is only about patients receiving new information that's written in their notes online from the day that the practice goes live and, and it does not involve historic records. 

[00:06:48] Munir Adam: Okay, well that's a relief to know and, and isn't to suggest that most of us, I would hope, would ever write anything crazy, but you might write something in a somewhat neutral way, but think can be interpreted very differently really. And if you are the patient and you are reading something that's so important and close to you, it's very easy to interpret it in a particular way because of the anxieties or concerns you have about your health. So I'll reserve my judgment for now about whether I think it's a good thing or not 'cause I genuinely have an element of ignorance about that. What about the jargon thing? Is there an expectation that we need to start writing records in a, in a different language so that everybody can understand it? 

[00:07:25] Devin Gray: This area is actually an area that I focus a lot of my time on because again, working with primary care staff, one big thing that came up was, well, no one supporting us with how we need to be writing in the records differently.

[00:07:38] What are the implications of that? What about how we already write in the notes? We're writing for ourselves, we're writing for our colleagues, we. don't necessarily write with patients in mind. Mm-hmm. So I did . Some work with a medical legal consultant at MPS. 'cause I really wanted that sort of real knowledge foundation, not just what my opinion is about medical record keeping.

[00:08:00] We put together a training webinar for primary care staff on how to write in the notes differently, which we did also record nationally. So I can share that link with you. 

[00:08:10] Munir Adam: That would be useful. Yes. Thank you. 

Our relationship with the care record

[00:08:11] Devin Gray: Because I, I think what really came up in that webinar was that this is a really fundamental shift in our relationship with the care record.

[00:08:20] It's always been the medical record, and really it's becoming the patient record. And what does that mean for how we write in the notes? And I think it's also important for us to remember that we are not the first ones to be doing this. You know, many hospital consultants have been writing their letters to us copying in the patient.

[00:08:39] Munir Adam: That's true. Yeah. 

[00:08:40] Devin Gray: There are also increasingly, I'm noticing as a GP, letters coming in written to the patient with me copied in. Mm-hmm. And that will have been a big change when that first came in. And also that there are countries around the world that have been doing this for some time now, and we have an opportunity to learn from them.

[00:08:56] We, we can talk about and go through some of that. Uh, learning. It's all very evidence-based. There's been all sorts of research that has been done, which gives some ideas about how we do need to be thinking differently about how we're writing in the notes. And because it's going forward, we have an opportunity here to change the way that we're doing it every time we're writing in the notes, we're thinking, okay, how is this gonna come across the patient?

[00:09:18] And that's gonna feel really clunky to start with. But we've been doing this since March and it's become, very quickly, like all the other things in general practice that we're juggling at the same time, it very quickly just becomes business as usual. 

[00:09:31] Munir Adam: Right. Okay. Is this definitely happening then? Is there any, turning back on this, do your practices have a choice about whether to share all of their records in this way or not? 

[00:09:39] Devin Gray: This is a great question and again, really glad to be talking to you about this subject because there has been so much conflicting information in this area...

[00:09:48] Munir Adam: Well, you can say that again. Yeah. 

[00:09:50] Devin Gray: So about what they should be doing or not doing. And as a result, quite a lot of fear around the subject. And as we've already got so much going on already in primary care, a big notty and controversial piece of work is the last thing that we can even imagine getting our heads around at the moment.

[00:10:05] So many are hoping it will go away. And to answer your question, it's now written into the GP contract. So from that perspective, it's not going away. Um, and I do believe we're in a much better position now than we were a year ago. So there is plenty of misinformation, lots of myths out there on this. But I do hope that your listeners come away from our conversation today feeling much more reassured and better informed about what's coming. 

[00:10:28] Munir Adam: Okay. Yeah. So if it's definitely here to stay and it has to happen, I do wanna focus in a few minutes on some of the things that we need to know as frontline clinicians in terms of how we document, but just before we do that, it might be better just to get an idea about what the practices need to do.

Why it's happening and how practices should manage this 

[00:10:43] Munir Adam: So the organizations that we work in, at least as employees, we should be aware of those sorts of things, right? I. 

[00:10:49] Devin Gray: Absolutely. And I'll try to be as brief as possible on those bits so that we can really focus on how this is gonna affect your sort of day-to-day jobbing primary care clinicians. 

[00:10:59] I mean the, the main headline really about this program is that all patients age 16 or over; this doesn't affect children in England who are registered with a GP, should be able to view new information in their online health record by the end of October, right? Um, so it's not about giving historical data, which we mentioned. It's not about sifting through hundreds of patient records. This is just about information being entered after a certain date, being visible to the patient online. It doesn't include tasks, it doesn't include alerts or screen messages. And it doesn't include proxy accounts. So that's the main headline. 

[00:11:36] Munir Adam: But presumably includes full access to free text as well. Absolutely. Not just read codes. 

[00:11:42] Devin Gray: That's what's such a big change. It also includes documents, which is new. Mm-hmm. Lots of patients have had access to their medication, their test results, their coded data already. So this is going to be a lot more, a lot more information. And, there is a, a wealth of evidence behind why this is happening, which I think is also important to mention.

[00:12:03] Munir Adam: Yeah. Tell me. 

[00:12:04] Devin Gray: Because, you know, historically pe as we've said before, patients have access to their notes, but actually in practice it's really difficult for them to get access to their notes.

[00:12:13] Munir Adam: Mm. There was a time it was very difficult to make sense of what was written, even if they did have access back in the day of Lloyd George, I think.

[00:12:20] Devin Gray: Exactly. 

[00:12:21] Munir Adam: But people are using fuller sentences and writing things more, aren't they now? 

[00:12:25] Devin Gray: I've certainly had at the back of my mind, when we knew that this was on the roadmap that for NHS England, it had never crossed my mind before that patients would be reading what I was writing in, in nearly real time.

[00:12:37] From the moment you save the entry, they can see it on their NHS app or equivalent you've. Probably had two years of subconsciously starting to think about how certain words or phrases might be used, but maybe for some of your listeners, it's really something they've never engaged with thinking about.

[00:12:55] Mm-hmm. So I think it's important to mention that the data does show that patients really do genuinely want access to their notes; that lots of studies have been done that supports it because it improves trust, empowers patients to take more ownership of their health, um mm-hmm, improves data quality because they can say, oh, that was my right knee, my, my left knee that needs operating on whatever it is.

[00:13:18] Fair point. Uh, And, and actually crucially bridges information gaps between providers. We know about these gaps in the system. We know that, you know, where I work, there are five local hospitals and two different trusts. So it's not easy for patients' data to move around with them, and patients having access to their records can really improve that.

[00:13:39] Yeah. The other thing that's really interesting is clinicians are also, when you ask them, very supportive about the idea of this, what we are concerned about is how it's rolled out, about who has responsibility for the data, about safeguarding of vulnerable patients, and, and these have been the headlines of the concerns raised by the B M A and the L M C; and there's a really interesting and real tension here between self-empowerment, and sort of protection and paternalism: We control what you see, because we want our patients to take more control of their health, but we also take our responsibility as a data controller very seriously. And, and this tension is where these controversies have emerged and where understanding what we need to do and whether or not we need to do anything about it has really come from 

[00:14:24] Munir Adam: Because there may be situations where one is hesitant about what they document rather than it reflecting the absolute truth. It might be more about entering things that isn't likely to cause conflict or create any kind of anxiety or affect trust or have any other negative unintended consequence. So I get it from that point of view, but I also get some of the points that you're raising about the advantages and why there's perhaps a much more greater need of this now where people a) want to be more in control, as you say. Number two, we want them to be more in control and take some responsibility with all of the chronic conditions that we now face, and where there's lots of different organizations involved and there isn't really an easy way of transferring information from one to the other.

[00:15:07] So perhaps a patient carrying it with them, so to speak. And maybe this is a step towards that. 

[00:15:13] Devin Gray: I think so, and what we have to do is weigh up the benefits that we've just talked about against the risks. Hmm. And the risks are small, but they're there. And so it's really understanding how do we mitigate for those risks?

[00:15:26] And that's where the preparation comes in, because the practicalities of of being ready for this is just giving consent for your clinical system supplier to switch you on. That's, that's all that actually needs to happen. Right. Which is new. A year ago it was, oh, by the way, we're imposing this, but the BMA successfully challenge that you do have to opt in before October. But the preparation is more in identifying patients who could be at risk of harm from having access to their notes. Yes, blocking them from having automatic access and then giving everyone else, who would be at very low risk, of having access to their notes and also would benefit from them.

[00:16:05] And do that all in kind of one moment when the practice goes live. 

[00:16:10] Munir Adam: And when you say about those who may come to harmful access, do you mean like people with mental health problems? 

[00:16:16] Devin Gray: I don't, and actually I'm glad that you mentioned that specific point because there is a real risk here that if practices in their preparation for records access cast, the net too wide and run a search that includes any kind of sensitive topic and block those people from having records access, then I think we are at grave risk of discrimination and increasing stigma. So, Patients might have mental health issues and have other circumstances that make them vulnerable, that for whatever reason, as a practice, you think that person isn't suitable for having automatic access. Their notes. 

[00:16:55] And I'm using the word automatic here because there is a myth, another myth I'm gonna flag. Mm-hmm. That when these patients are identified as being potentially at risk of harm, and a code gets put on their notes so that when you go live, they don't automatically get access, what practices don't need to do is review every single one of those notes before they go live.

[00:17:17] This is just about managing the risk and saying, here is a group that we need to have a closer look at. We are not gonna give them automatic access. If they come to us and say, I'd like access to my notes, we'll look through their record more thoroughly and talk to them about the pros and cons, and we may well switch it on. We might say, look, these are the reasons why we don't think it's the right thing for you. 

[00:17:38] But a lot of the fear around the workload has been the. I would say misinformation, that by applying that code, you need to go through the notes. And we have 26,000 patients where I work. Mm-hmm. You know, if you apply 3% of patients have this enhanced review code that's several hundred patients that ,are not getting access to their notes automatically. And we absolutely don't have the capacity to review those in advance. 

[00:18:04] Munir Adam: By giving access to patients in this way on a large scale, are we accepting responsibility for any adverse outcomes that result from this? 

[00:18:13] Devin Gray: In a word Yes. 

[00:18:15] Munir Adam: Oh, dear. 

[00:18:16] Devin Gray: As the data controllers, 

[00:18:17] Munir Adam: I wish I hadn't asked that question. 

[00:18:19] Devin Gray: But I think again, it's, it's, it's taking a broad view of the risks and benefits, so you can mitigate those risks substantially in two ways.

[00:18:28] One, you identify patients in advance who are likely to be at risk of harm from having access to their notes. It's not a big number. What I'm really talking about here is patients who are vulnerable for a number of circumstances and are, for example, on your adult safeguarding register.

[00:18:42] So that can be domestic abuse, coercion. That's one cohort. And then the other is people who may lack capacity for any reason. So they can't give capacity to consent to, to accessing their notes. And again, that could be a number of reasons. That might be dementia, that might be more significant learning disabilities; that could be a language barrier. Again, that's gonna be very practice specific. 

[00:19:07] The, the first task is running some searches, stopping people from having automatic access. And the other thing is remembering this is perspective. So at the moment the practice goes live, the patient's n h s app is empty. There's nothing in it they haven't been to see GP yet, right? 

[00:19:23] So if everyone in the practice is supported to understand that patients have access to their notes, and we all write in a way that we have that in mind, then the risk going forward is actually extremely low, as long as we're thinking that way. 

[00:19:39] So, as an example, we went live where I work in March. In the middle of March, a young woman came to see me and disclosed domestic abuse and coercion. Now in that consultation, we were able to quickly address whether or not she had access to our notes, and because she was in a coercive relationship, as she was disclosing it to me for the first time, we were able to make a decision together about her online access.

[00:20:05] Everything that had been written in her notes beforehand, you know, she came in with a toenail problem six months ago. First of all, they're not gonna be seen, and second of all is not going to put her at significant risk of harm, even if she's in a coercive relationship. 

[00:20:18] The moment of potential harm was when she disclosed it to me, and because I knew about records access, I was able to determine actually she didn't have an online services account. Potentially he could take her phone and set one up, so we put a 1 0 4 code on her record so that if that account was created, she wouldn't be given automatic access without her knowing. So you, you can mitigate the risk through blocking automatic access. But even if you did nothing, if you wrote in the notes going forward, understanding that patients have access to their notes, then the risk is going to be very small.

[00:20:54] Munir Adam: Hmm. Just to go back on the point you just mentioned about them not knowing whether they've got access. So do you practice have a responsibility to contact every single patient and let them know that this is now happening? 

[00:21:05] Devin Gray: This is a really interesting point. I. From the contract point of view, N H S England want practices to genuinely offer prospective records access to all their patients.

[00:21:16] In theory, you could put the 1 0 4 code on all the patient population and demonstrate to N H S England that you were genuinely offering. So not just a poster in the waiting room. If you were able to write to, through whatever means, every patient in your practice and say, we are now offering records access, ticker box here, opt in or opt out, and then you'll be willing to manually switch on all of those patients. Then you would still be meeting your contract requirements. But that's an awful lot of work. 

[00:21:46] So you, you can do that. And the B m a when they put some information out about this earlier in the year. They did say to practices that they could do that. What they didn't explain was how much work that would involve. That was my sort of issue with their advice is they just said, oh, you can just do this, and lots of practice just wacked the 1 0 4 code on, and then when I spoke to 'em about it afterwards, they're like, oh, this really is not a very good idea. And then it was a mess on picking it. 

[00:22:10] So if for whatever reason a practice feels that that is what they want to do, they can do. Your question was more about do we need to tell patients about it? And I think we have a responsibility to do so, because otherwise, how can we expect patients to know that they need to keep their data safe if they don't know that it's on there? So the NHS app is secure but if they don't realize that the consultation that they've just had and all the free text is on there, how can they make sure that someone else isn't using their phone? 

[00:22:43] Munir Adam: Exactly. Yeah. I, that is what worries me. Because they have an incredible amount of trust in us often and they trust us to keep their data secure, include not sharing it with anybody unnecessarily and include that may include not sharing it even with them. 

[00:22:57] Is it a lot of work to contact every patient? I mean, you can batch produce letters and things, can't you? Now? Well, it's all text message, isn't it? Can't you send a text message to everybody in one go?

[00:23:04] Devin Gray: I think the comms would be easy, but you'd have to respond to the opt-ins and the opt-outs. And it depends on your practice size. Again, with 26,000 patients, 25,000 can have access to their notes. So we did that in one button. And are writing everything that, everything that goes in the notes we have with patient viewing in mind.

Documenting challenging encounters

[00:23:22] Devin Gray: And we've changed practice processes as well. So again, perhaps beforehand, if there had been a confrontation, shall we say, at the reception desk, perhaps in the past, a receptionist might have written a couple of lines in the notes about you know, the patient having been rude or something. And we now document incidents in a log outside of the patient record. It's really just about thinking a bit differently about what you're using the record for. What is the purpose? 

[00:23:46] So another example is if you've had a challenging encounter in general, in a clinical encounter, and I'm sure anyone listening to this could, could. Bring one to the front of their mind.

[00:23:57] Absolutely. Yeah. Yeah. I think that we have often used writing in the notes as a bit of a catharsis. You know, it starts with difficult consultation and then it's patient demanded and it's, it's all quite emotional, when you read back later, you can really feel the emotion in the entry, especially perhaps if it was a colleague.

[00:24:15] So again, this is about thinking differently. This is about saying, okay challenging encounter. Go make a cup of tea, go and talk to a supportive colleague. When you come back to your desk and write in the notes, what do you need to write to capture the clinical information that is relevant to that patient's ongoing care and, and how could you write that in a way that is factual, that is sensitive? You know, you could maybe write 37 minute consultation if you want to, rather than difficult or long, you know, just stick to the facts. Anyone reading that back will see, gosh okay, 37 minutes must have been quite a lot covered in that one. Um, yeah. So how can we be writing in a way that that captures the information that also will not fill up your inbox with patient challenges?

[00:24:59] Because again, patients have a right to challenge the accuracy of their notes, but. And this is where the work with the MPS's medico-legal consultant was so helpful, if you form a clinical opinion at the time that it's just based on the judgment that you have as a professional with the information you had at that moment that is clinically factual from a record point of view, and patients can't challenge it. Hmm.

[00:25:22] You can write a note on the record saying patient didn't agree, but you do have a responsibility if you write the wrong information in the notes, you do absolutely, as the data controller have responsibility to get that right.

[00:25:33] If you are writing factually correctly, then you are, you are not going to be having a constant back and forth with the patients about what should or shouldn't be written. 

[00:25:42] Munir Adam: Do you think it's better to avoid putting down diagnoses than until we're sure that they're actually the case. So you wouldn't put down somebody who's had a CVA unless you know, you might say that they've got weakness until it's been confirmed, otherwise you have to make sure you go back and correct it.

[00:25:56] Devin Gray: I think we've been doing that for some time in our records already, especially with the problems coding. Mm-hmm. You know, if someone comes in with abdominal pain and you suspect appendicitis, you initially code it as abdominal pain and then you write impression, abdominal pain query appendicitis. Yeah. So I think especially the way that the electronic health record is set out, if you write your history and your examination as factually as possible. And I often use quotation marks actually in the history now, particularly where I might have a patient who's paranoid or you know, something where they're having a difficult time. You just capture as they said it. And then under comment you're , pulling it together in your producing a clinical opinion.

[00:26:38] And MPS say that is absolutely fine and you can evolve the code when they come back from their a and e, visit with their appendix out. 

[00:26:47] Munir Adam: I guess it's a little bit easier to document something verbatim, but what about if it's more about an impression about how they're coming across? What if they have been a little bit pushy or a little bit aggressive?

[00:26:57] Is that something you would just not document then? 

[00:26:59] Devin Gray: I think you have to ask yourself what the purpose of documenting that is. 

[00:27:03] Munir Adam: Right? Right. That's a good answer. Yes. Is it the catharsis? Is it to warn others?. And is that necessarily an effective way of warning others? And is it even a fair thing to do? You know, we all get a bit aggressive times in life. I don't think anybody's perfect. 

[00:27:18] 

Redaction: When to withhold information 

[00:27:18] Munir Adam: But if entries are made prospectively, let's say that we then think probably shouldn't have been written. Can we just redact those? 

[00:27:27] Devin Gray: So the redaction piece is a good thing to think about next because anyone who's listening to this who doesn't know how to redact, and by that I mean make not visible on the patient's notes needs to know how to do that.

[00:27:39] That's really, really important. And I work in an Emis practice, everyone in southwest London has got is Emis, so I'm much more knowledgeable about Emis. You can essentially right click on anything in the record now and make it non-visible.

[00:27:53] So you can click on a problem, you can click on a referral document, investigation. You can even click on a sub investigation. So if you had someone who was going to come to significant risk of harm by seeing that their eosinophil count is not 0.5, you can right click and redact that from view if you want to.

[00:28:10] So certainly people need to know how to do that. Mm-hmm. And then the question is, what do you redact? Yeah. And what's your threshold? And. Again, an important theme here that came out in the work with MPS was you might redact something from online view, even temporarily. 

[00:28:26] So just say you receive a two week wait document. A scan result back, you've sent someone off, you think they might have cancer, you get their CT scan result before the patient knows. You can either leave that document unfiled and they won't be able to see it because test results and documents will only be visible to the patient when they're filed.

[00:28:45] Okay? So while they're in your workflow, you could just leave it there. If you're a bit like me and you're type A and you want everything to be done at the end of the day, you can still file it and then go back and make it non-visible on the notes. Until you can contact the patient or you wait for them to be seen in their clinic appointment, and then later you can make it, you can make it visible.

[00:29:04] Munir Adam: What if you forget. What if you arrange a follow-up and the patient doesn't turn up and then it just remains invisible? Which actually brings me onto my next question about that. When you say you, you are making it invisible, is it just from the patient or is it also from other clinicians? Does that just disappear off Emis?

[00:29:18] Devin Gray: No, it's just produces in Emis's case, a little x on the right hand side, which shows that it's not visible on the, on the patient record, and then the patient can't see the entry there at all. Okay. The, the next part about redaction, which I think is useful to explore is some people have said, okay, well why don't we just do two entries in the notes: one for the patient and then another one where you then write what you really think and redact that? Oh, no one's suggesting you do that for every patient. But you know, you might have an example of, Um, someone that you see that you do want to make an observation. It may be a very reasonable observation.

[00:29:52] I saw a patient a few months ago who was newly registered with us, and he had some very strong and slightly odd political opinions. Uh, he was brand new. I didn't have any previous notes from him, and I wasn't sure if he was just very opinionated or a bit paranoid. Mm-hmm. And it was my first encounter with him.

[00:30:10] And so for that example, I did the consultation and I just made a, a couple of lines in a separate entry just showing my curiosity about his circumstances so that if anyone else were to see him, they might just see that I'd done that. But I wrote it in a way that if in five years time he asked for his notes -because that, that's the the point that I'm trying to tease out here, I would be comfortable with him still reading it. 

[00:30:35] So even if you put an entry in the notes and you make it non-visible to the patient online, they can't see it now, great, that was your intention. But they can always still ask for subject access request. They're still within their rights to ask for their full historical records, and that process is still quite a manual one.

[00:30:54] And it's quite a human one. Mm-hmm. Yes. We use redaction software that helps with that, but it does require someone to go through and say, oh, Dr. Gray wrote something that she didn't intend for the patient to see there, I'm gonna redact that. 

[00:31:06] And the other aspect of that to think about is that the threshold does need to be significant harm. So something that you might redact from online view for a patient might not meet the same threshold is that your indemnity provider would expect you to do for a subjects access request. 

[00:31:21] What I'm trying to say for this is no matter what you write in the notes, even if the patient doesn't have an online services account...

[00:31:27] Munir Adam: ...they can still access it.

[00:31:29] Devin Gray: Even if you've predicted the entry, write it in a way that you would not feel mortified they are reading it in a few years time, because as long as it's factual and as long as it's sensitive and it's observational, that should be fine. And it shouldn't break down your rapport with the patient and they should be able to see that you were just looking out for their you know, their wellbeing and their care.

[00:31:51] Munir Adam: It sounds to me like a lot of this can be done as long as we've got it at the front of our mind and we're very careful in how we document it. It's not a case of not documenting, it's just about thinking about what I would probably say, assuming that this patient is at this very moment reading what I'm writing or typing, Online, they presumably can't see that something has been redacted. 'cause otherwise there'll be lots of queries. 

[00:32:14] Devin Gray: Yeah, good question. And again, that raises a, a safeguarding point. If you do have someone who is expecting to see an entry in the notes and there isn't one there, just be mindful of that. So, you know, they might say, well, I've just seen the GP, I can't I see the entry in the notes.

[00:32:27] So if you have got a patient that you have decided to give online access to, but for whatever reason you're redacting some of the entries, just be aware that sometimes the absence might be a. Yeah. You know, my view is if you find yourself in a situation where you are constantly wondering whether or not to redact bits of the patient's notes, just ask yourself, should this patient have online records access? It's okay to say this is not appropriate for this patient. 

[00:32:52] I'm gonna give another example. I have, uh, a young woman who is extremely paranoid. She has a mental health disorder that involves extreme paranoia and she is quite aware of what's going on with her notes. So she wants records access, she wants to see what's written in the notes.

[00:33:09] And you know, I'm often communicating with mental health teams. I'm often writing third party information. In an ideal world, she wouldn't have records access switched on, but actually I think turning it off would make her more paranoid. And so in her individual case, we're, Doing that. It's the only person I'm doing it with where I'm occasionally writing.

[00:33:27] So we'll have a consultation. I often use a quotation marks just to give a sense of her grandiosity or you know, whatever. Whatever it is in the consultation. And then I'll just write a couple of notes to say, seem very calm today. You know, whatever it is that I want to add in that I don't want to increase her paranoia by her seeing.

[00:33:46] And if in 10 years time she makes a full recovery from a mental health condition, ask for her notes, I feel comfortable with everything I've written in, in her notes that she could ask for in the future. But right now with her paranoia, it wouldn't be appropriate for her to see them. Okay. And if she asked for subject access request today, she wouldn't be given it because the threshold of significant harm would be there.

[00:34:06] Munir Adam: Mm-hmm. Yeah. Everything you said so far about withholding information on the records relates to information that the patients might come to harm from accessing or at least accessing at a particular moment in time. Is that the main criteria for withholding records or are there others? What about if we might come to harm?

[00:34:24] Devin Gray: Yes, that is actually justified. So the way I think of it in really simplistic terms is that there are three things to think about, about when withholding access to patients. One is if they would come to significant harm through having access to their records. Okay? So, uh, paranoia is an example of that, but also someone with severe health anxiety, you might be able to justify that them having 24 hour access to the notes, seeing their results on a Saturday morning would cause more harm than good. Yeah. Uh, again, that really needs to be done in collaboration with a patient like that. So if they would come from harm. 

[00:34:59] If they're unable to keep their records safe. So that might be someone who is a victim of domestic abuse in a coercive relationship. It also, like we talked about before, might be someone who doesn't have capacity. 

[00:35:11] And the third one is that someone else might be at risk of harm from having access to their notes.

[00:35:15] Munir Adam: Ah, oh, right. Okay. 

[00:35:16] Devin Gray: So in an escalating kind of aggression violence situation where you think that practice staff could genuinely be at risk of harm from a specific patient having access to their notes then that would be a reason to not give records access. 

Data protection in the hands of the patient?

[00:35:30] Munir Adam: I wanna quiz you a little bit more about the second point you made about whether they'd be able to look after their records and, well, my impression is that a lot of people out there are a little bit carefree and irresponsible with their data.

[00:35:41] You know, we hear about data leaks all the time everywhere, don't we? And it's, it often comes down to people not saving passwords or sharing those. 

[00:35:48] Devin Gray: The, the NHS app, um, I think is as secure as it gets in terms of patient apps. I'm not. I'm not an expert on what goes on behind the scenes, but certainly, you know, like when you're accessing your online banking, you can link it with the, with your fingerprint or your face ID on your phone.

[00:36:05] Okay. But it is generally two factor authentication, so, I'm not worried as much about the data security element, although that is something that patients do worry about and I think we do need to give patients the option to opt out of records access. Maybe plenty of patients who say, I don't trust you with my data, turn it off.

[00:36:23] We should be allowing patients to have that option as well. I think about it more of, oh mom, can you just order my repeat prescriptions for me? Here's my phone. I've unlocked it. And not being aware that they're, you know, the pill that they've just been prescribed is, is on there. So that's where I think that we need to be cautious about being too conservative with how we raise awareness of this.

[00:36:46] I know that there's a big NHS app campaign coming in the autumn, and I think that's how N H S England will be promoting records access, not individually, but saying, did you know all that your n h S app can do? Did you know that you can see your test results or your repeat prescriptions online? See your medical records. 

[00:37:04] Munir Adam: Yeah, and fair enough. Because if this is something that, you know, thousands and thousands of, of us will be able to access directly, I think it's probably quite important that as a, as a society and as patients, we know that that is what's happening. Yeah. In terms of our own data, our family's data, friend's data. 

[00:37:18] And something you said earlier just got me thinking about another potentially worrying scenario, and that is if they managed to get access to their records and their records has information about somebody else that maybe we have referred to, for example, if you've got a, I dunno, a 10 year old child and you are talking about something and you might mention something about their, their parent or why their parent didn't bring them or, or whatever.

[00:37:39] So you're, you're mentioning information about somebody else. 

[00:37:42] Devin Gray: Thankfully children are exempt from records access. So this only applies to the records of people aged 16 and over. 

[00:37:48] Munir Adam: Yeah. Like once they become 18 or 19 you've included information about somebody else, like their parents or, or guardians. 

[00:37:55] Devin Gray: But if they ask for historical access, so if they submit a subjects access requests that would go through your normal reduction process and third party information would have to be manually removed.

[00:38:06] Munir Adam: Hmm. 

[00:38:07] I dunno. 

What's happening in other countries?

[00:38:07] Munir Adam: Perhaps like some things maybe we're worrying about it too much or are we not worrying about it enough? 

[00:38:13] That's not an easy question to answer. Perhaps we can get a little bit of a feel for that by going back to something you said earlier about other countries having already done that and what their experiences were like. 

[00:38:23] Devin Gray: Yeah, absolutely.

[00:38:26] So the us piloted something called Open Notes, uh, in, I think it was around 2010. They're, they're more than 10 years into their journey on this now. Um, and they have produced quite a lot of data. Now a lot of people listening to this will think we have very little in common with the US healthcare system which is fair, including a difference in privacy care laws.

[00:38:46] Mm-hmm. But it's not just them actually Denmark, Australia Japan. There are a number of countries that are either in the piloting stages or very well underway with the idea of patients having access to their notes. Okay. And they have shared, shared their learning in a number of different sort of research papers.

[00:39:05] And when I did the webinar with a colleague from from MPS on medical record keeping, we came up with some sort of top tips from the learning from those countries about, writing in the notes going forward. Which I can just share the, the headlines of if you think that would be... 

[00:39:21] Munir Adam: yeah, please do...

Don't use the record as catharsis

[00:39:22] Devin Gray: We talked about catharsis actually, which was the one that I added on, on the end because it was just my own observations about what we do just as humans. 

[00:39:30] Yeah. 

[00:39:30] Munir Adam: Have you, have you done that before? I know I have. 

[00:39:33] Devin Gray: Absolutely. Yeah, and I think, you know, I see it a lot in my colleagues as well, and it's a really, there a couple of patients in particular that spring immediately to mind to I, you know, I get very hot and angry after our interactions and, and need to step out of the room.

[00:39:49] And so now the records do need to be, contemporary. We, we know that, but it, it can be a couple of hours later. As long as you can still capture the data accurately. But you could write it in a Word document a bit like actually when you are, you know, you might write a cross email to someone and then save it in the draft and go back, uh, a couple of hours later and edit it.

[00:40:08] Sort of take all the angry, very, really words out. And when you're a bit calmer, 

[00:40:13] Munir Adam: It's incredible how you see these things differently afterwards, isn't it? When you've let the, the board settle and, and you think, oh my God, was I about to send that? 

[00:40:20] Devin Gray: Yeah, exactly. I think we need to be thinking about this in a very similar way, so you can't save us a draft as far as I'm aware or I'm not particularly confident of how to do that in the health records.

[00:40:29] I would either write it in a Word document and then edit it or just write the key headlines of the, you know, the temperature, the blood pressure, whatever it is, and then come back at the end of the clinic after a cup of tea and write what you need to.

Tips for documenting appropriately

[00:40:43] Munir Adam: Okay. So let's hear some of those. I think you were mentioning a few top tips. 

[00:40:47] Devin Gray: So the first one is about clarity and succinctness, so be clear and brief. Patients don't want to wade through paragraphs of our entries and frankly, we don't have time to write them anyway. Mm-hmm. So direct and simple language with minimal abbreviations or medical jargon makes our notes easier to engage with and understand.

[00:41:07] And my sort of top tip in this section is, can we be using clinical templates more? I mean, we've got them available. Ardents and others have produced templates that could structure for certain consultations where a lot of the text is already written there. You're just writing Yes, no filling in the blanks and when the patient goes to see it, it's structured in a really clear way.

[00:41:27] The second one is choose your words wisely. You mentioned this right at the beginning, Munir about, we've been trained to write in a certain way, just like lawyers have and you know, other professionals, but , I'm not convinced it's fit for purpose anymore for the medical records. It's fine when you're talking to the surgeon on the phone to send in your appendicitis if you stick to descriptive language, avoiding judgment then you'll stay out of hot water. So I'm gonna use some examples here. We're already quite good at this one. Rather than writing obese, it's absolutely factually accurate. There's nothing wrong with it, but maybe just put the BMI in there. Say BMI is 34, because actually that's much more useful information than obese.

[00:42:07] Yeah, rather than unkempt can you describe what you see? So I was thinking about a patient that I saw the other day who I might have traditionally written unkempt. What I really noticed was there were food stains all down his front, shirt was untucked. His shoes were about four sizes too big, and there was a very strong smell of urine.

[00:42:24] Mm-hmm. And actually, for someone who doesn't know that patient, if they see them for the first time and go, oh gosh, what's going on here? And see my previous notes and say, okay, this is normal for him; that doesn't necessarily mean things have gone differently. 

[00:42:35] Also avoid words like denies or excessive. We often will say, denies recreational drug use. To a patient that sounds like you don't believe them. Yeah. It's just a different way of thinking. Can you just write no recreational drug use and just take them on their word for it rather than excessive, which I think carries a lot more judgment than we realize. Alcohol consumption within recommended limits.

[00:42:57] Whatever it is. Can you just avoid using words that could sound to patients like your casting a judgment on them? Okay. The NHS app contains a glossary of common abbreviations. So I'm not saying don't use abbreviations, but at the least stick to common ones that patients could look up if they wanted to. Yeah, and just be aware that some of them might have a different meaning.

[00:43:18] So if you write. S o b you know, will they read that as the word sob? Not knowing that's an abbreviation, or one that I am that often comes up, which has got different meaning across the country, is acute and chronic. So I've noticed that patients will particularly say, I've got this chronic pain, and they, they don't mean chronic, and so when we use the word chronic, it gets misinterpreted.

[00:43:40] So it's just about having an awareness of that. 

[00:43:43] Munir Adam: And, and actually I'm now thinking it's not even just about the patient, but actually we are working much more multi-professional now and not everybody has been taught in a medical model and everyone's using a slightly different jargon even within primary care.

[00:43:54] Mm. So perhaps it's gonna benefit us in that as well. We can understand each other better. 

[00:43:59] Devin Gray: That's a good point actually. 'cause we have our first contact physios in the practice and I don't understand a jot of their entries because it's all physio language. Yeah. I have absolutely no idea what their assessment is, so I just have to go to the final impression.

[00:44:14] And even then, I'm not quite sure what the problem is 'cause it's also an acronym. So yeah, I think that's a fair point. 

[00:44:20] Munir Adam: So be objective and it's about what you observe rather than your judgment on what you observe or reaching conclusions that might be challenged. 

[00:44:29] Devin Gray: So that actually another tip this is Emis specific, but have you heard of quick codes?

[00:44:35] Munir Adam: Yeah, I use them, yes. Yeah. 

[00:44:36] Devin Gray: Brilliant. So not everyone does, but again, if time is the issue or standardization of your safety netting would be something that'd be useful to do quick codes are a brilliant way that you can have any pattern of letters or numbers that you put into Emis and then it auto expands with whatever you want it to.

[00:44:52] So you might have hashtag SSRI and it will give a paragraph on your SSRI safety netting. Obviously that needs to reflect the conversation that you actually had with the patient, but that can save time and you can write it in a way that's really patient accessible and you can use that every time.

[00:45:09] So I think we could all be using quick codes more. 

[00:45:12] Munir Adam: So what I'm gonna do is I'm gonna go back to the quick codes that I do use and read them from the perspective of a patient. I've never really asked myself, how would this read if I wasn't the doctor? I've not even asked myself how that reads if I'm a different health professional, let alone if I was the patient.

[00:45:26] Devin Gray: And then there just two more on writing in the notes, I think would be, I helpful to mention. We talked about observational, but really again, it's just emphasizing the importance of sticking to the facts. Um, yes, and, and just being, it's absolutely fine to write your clinical impression at the end, but just be cautious.

[00:45:45] So there was again, an example which I think brings this to light of someone who was going through a custody divorce and a custody battle with their children. And it was noted a few times when he came into the consultations that he, um, well the doctor thought he was inebriated with alcohol and made some comments about that in the notes. It felt relevant at the time. And then the partner wanted to highlight this in the court around the custody battle, and there was an access to notes request. Oh gosh. And then it was suddenly like, well, what evidence do you have that I was drunk? And this is a really niche example, but, and this isn't really related to, this is a subject access request, but it, it got me thinking, okay, actually, even when you say , drunk, what do you really mean by that? Smells of alcohol, appears uncoordinated, slurring speech is a much more accurate and helpful thing to write in the notes right than appears drunk. 

[00:46:41] Munir Adam: Gosh, it's such an easy mistake to make though, isn't it? 

[00:46:44] Devin Gray: Yeah. And then the final one is about openness. And I think this is one of the hardest things. So we are very used to maybe saying one thing to the patient and writing something else. So an example that was actually, I think this was on one of the N H S England videos, which I thought was really helpful as someone comes in with some abdominal symptoms and, and the clinician thinks it's IBS. But that's a diagnosis of exclusion. So doing some tests. In traditionally, you might say, I think you've got I b S. We're just gonna do some tests and I'll see you in a couple of weeks. And then they go on their record and they Google what a CA 1 25 blood test is and think, oh my gosh, my GP actually thinks I've got ovarian cancer and they're too scared to tell me.

[00:47:25] And I'm not suggesting for a moment that we're going through every single investigation in our consultation and saying what it's for. Mm-hmm. But the openness could be framed in a different way. It could be, I've heard your symptoms. I really think you've got this. We've got to exclude some other things, including some worrying things like cancer, which I don't think you have, but those are what these tests are for, and I'll see you with the results.

[00:47:47] And then when they see that blood test, you've contextualized it. I think candid wording, being really clear with your plans with the patients can actually allay fears perhaps in more anxious patients; can de-stigmatize. , and , again, it's a different way of working, but if we're talking to the patient like we know they're going to see what we write, I think that will start to come out as we go.

[00:48:08] Munir Adam: My feeling about all of this is that there's an incredible amount of useful information that you shared in terms of being more aware of which way things are turning, in terms of doing the right thing when we're documenting, but that this is gonna be a journey. I don't feel that that's it from tomorrow my document's gonna be perfect; and I think that's true for anybody. 

[00:48:26] I think we need to be very careful. We're on a journey here, hopefully the vast majority of us for most of the time won't find ourselves facing too many challenges in queries or disagreements with what's on the records. If we do, I guess the right thing to do is to then what contact the medical defense? Would that be the way to go? 

[00:48:44] Devin Gray: Absolutely. And they've been supporting us with these kind of queries for, for a long time. But interestingly, they haven't had a big spike in queries on this, but I think we should be using them if there's something that we're unsure about. Or definitely if a patient gets in touch with a practice and wants to challenge something written in the record it's worth having a conversation with your medical indemnity provider.

[00:49:06] But it is worth saying that if it is factually accurate, one thing that you can say to the patient is, I'm really happy to write a note on there saying that you don't agree with my impression, but I can't alter your medical records. But if it is wrong patient, wrong limb non-smoker, ex-smoker, when they've never smoked, whatever it is that is upsetting them and it's incorrect, then you do have a duty to, to make it accurate again.

[00:49:28] Munir Adam: What an important point to end on, uh, because that may happen, we may be under pressure to change even our impression or things that we really did honestly feel was the truth or was a very likely conclusion simply because we're worried that this patient is gonna take this further if we don't. My view on that is that if that was our clinical impression then that that is what we should stick by.

[00:49:51] But as you say, if there's something that was clearly factually wrong, we should be humble about that and say, oops, I got it wrong. Let me correct that now. 

[00:49:58] Devin Gray: Absolutely. And your indemnity organization would back you up on both of those positions. 

[00:50:02] Munir Adam: Brilliant. But hopefully most of the time nothing like that's gonna happen and we just have to get it better at how we document.

[00:50:07] Devin Gray: Absolutely. 

[00:50:08] Munir Adam: Okay, thank you very much. Thanks Devin. Lot of food for thought there.

[00:50:12] 

[00:50:16] Munir Adam: I do feel somewhat reassured having listened to Dr. Gray. Not totally, but I think what's clear to me is that I really need to think carefully about how I document from now on.

[00:50:26] But what about you? It's over to you to think about what you should be doing differently from now on. Do you need to change the way you document or have you already got it right? Do let your friends and colleagues know about this through social media and other ways so that they can benefit from this as well.

[00:50:41] As always, we do ask you to rate us and leave comments on Apple Podcasts and other means normally by scrolling down the page. And you can also leave feedback using the link in the show notes. 

[00:50:53] Next month we'll be covering a very different topic, which is workforce transformation in primary care. But that's it for today. Thank you for listening, and until next time, keep well and keep safe.

[00:51:04] 

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[00:51:31] Primary Care UK was developed by Therapeutic Reflections Limited to inform, educate, support, and unite the primary care workforce. Specifically, it is not for the general public or patients. All information and advice contained therein is time, location, and context dependent and general advice only. No guarantees are provided with respect to the accuracy of the content.

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