Responders raised several types of patient information that they considered to be stigmatising: mental illness, substance abuse, drug dealing, sexual abuse, domestic violence, child abuse, human immunodeficiency virus status, multiple sexual partners, sexual preferences, sexually transmitted diseases (STDs) that may be stigmatising, extramarital affairs, social/family problems, abortion, and imprisonment. Results regarding managing these types of information emerged for two major categories and were consistent across the sex of physician and number of years of experience:
Difficulties in documenting information
Without being specifically asked about stigmatising information, 44 GPs (34%) commented on difficulties in documenting it. Specific challenges were deciding whether to include clinically relevant but sensitive information, explaining to patients the importance of including relevant information, and finding appropriate wording for information they decided to include. Typical examples of GPs expressing difficulty in deciding whether to include relevant information were:
‘There’s some things that aren’t included. There’s some things that have to be included. And there’s some things that you kind of just use your judgement and try your best to document, but it’s tough.’
(ID: 103088)
‘It’s really hard. I think I would say if a patient says “Don’t put this in my chart”, then maybe that shouldn’t go in the chart and they’re talking to you as a physician and it’s very confidential interaction. The hard part is some of that information they may then tell you has a direct impact on their health.’
(ID: 206149)
GPs considered several criteria for deciding whether to include a piece of information: their judgement as to whether it would be dangerous to exclude the information, whether it was important for other practitioners to see the information, and how important it was to the patient, who could be forceful in asking that the information not be documented.
When interacting with patients, some GPs found it difficult to explain the importance of including relevant clinical information. For example, in the case of a patient with MH issues, a GP stated:
‘But sometimes people will ask you to not put things in there that are relevant, and it’s hard to explain to them that’s important to their medical care, and that people know. So that can be kind of an issue.’
(ID: 405242)
In another case of a patient with non-MH issues, a GP said:
‘Yeah, it’s hard. And oftentimes I will tell them “If this is really, I think this has a direct impact on your health, I think I have a great memory and I might remember this but I don’t, and I need, I need you to work with me so that I can take the best care of you possible, and that means that we really have to have everything out there and I can access it.” And it’s hard.’
(ID: 206149)
Even after deciding to include a piece of information, wording it appropriately was often a challenge. GPs were concerned that the way they worded potentially negative or embarrassing information may come across as being judgemental, which could offend the patient or stigmatise them if others read the medical record. As one GP stated:
‘I was just thinking, there’s other things ... that one needs to be careful of. Let’s say you don’t believe the patient, or the patient is telling you some stories which you have a hard time to believe, or let’s say you think they are drug-seeking, I think one needs to be careful when you put [that] down. You may describe the behaviour and make such a statement as “This behaviour is suggestive of drug-seeking behaviour” ... but in the real world ... when you have a limited amount of time, you may end up as putting just “Drug-seeking”, and it might, you know, it might be counterproductive, it might be judgemental, and you know not the best way to do it.’
(ID: 305454)
In other cases, GPs had difficulty finding a way to word health-related information when patients asked that the context not be included in the record. For example:
‘Like I had someone a couple weeks ago, yeah, who was kind of involved in an affair situation and they were like “I don’t want that in the chart”, so I said “Okay”, you know. It’s a little hard, you know, because then when you’re kind of like doing STD testing and things like that, it’s like “Hmm, what diagnosis do I put?”.’
(ID: 200200)
Strategies for managing stigmatising MH and non-MH information
Although GPs were not asked about managing stigmatising information, more than half of the 128 GPs interviewed (n = 75, 59%) described strategies they used for managing sensitive MH and non-MH information (Table 1). Strategies were similar for documenting MH and non-MH information: to exclude stigmatising information to respect patient confidentiality, to include information but restrict access to it, to include but neutralise information to minimise potential stigma, and to include it given the potential impact on health care.
Table 1. Strategies by type of stigmatising information (n = 75)
However, the proportion of GPs using each strategy differed somewhat by type of information.
Excluding information to protect patient confidentiality
Excluding information was more commonly used for non-MH than MH information. The reasons for exclusions were similar for both types of information: respecting patients’ requests and potential non-medical consequences for patients.
Respect for the patient’s wishes often led the GP to exclude information. One GP described a typical sentiment:
I see a lot of mental illness and a lot of kind of depression kind of symptoms, and some people say “I don’t want that in” ... I definitely try my best to respect patients’ wishes, so it really kind of stems from there.’
(ID: 103088)
In other cases, GPs decided not to include information because of the potential consequences for the patient if those outside the medical field accessed the information. As GPs explained:
‘For most of us, it would be if they didn’t want to disclose an abuse history, sex abuse, or if he battered his wife and he was under investigation or his kids and they’re DSS [Department of Social Services], and that’s why he didn’t feel well, he might not want that in the chart because there’s actually legal issues. And he asked me not to include it in the chart, and I’m treating him for his diabetes and I’m not reporting him like as his kids’ paediatrician, then I would respect his wishes.’
(ID: 104840)
‘There are people who will tell me not to put that down because they do not want to become uninsurable. So I will not put information that may interfere with their getting insurance, or life insurance or medical insurance.’
(ID: 400521)
Another example of excluding information concerned what to send to other providers, particularly specialists. As one GP described:
‘I suppose I would pick and choose what would be pertinent for [other providers] to know and, you know, most of the stuff is pertinent, especially from a psychiatric standpoint, but certainly not to a nutritionist. The nutritionist doesn’t need to know their psychiatric history. I would just focus on his diabetic and hypertensive history, medications, recent lab results, that sort of thing. So I mean if he was going to see an endocrinologist because of uncontrolled diabetes that we weren’t able to control with oral medications, and whether he needed to be put on insulin, you know, I think I would again address his most recent labs, his medications, and I don’t necessarily think his psych history is necessary to be sent along to that specialist, so that probably wouldn’t be included.’
(ID: 200387)
Including information but restricting access
A similar strategy that did not entail complete exclusion of information was to restrict access to certain pieces of information. GPs would limit some notes to themselves by using ‘sticky notes’ or codes. Sticky notes allowed the GP to remember the issue without more general distribution. A GP explained:
‘So if I’m going to have something I have to put it in my desk, separate from their medical record, if a patient had a history of abuse, for example, that they didn’t want a part of their medical record, or if they had other confidential issues that they didn’t want a part of their medical record, I would keep it in my desk, separate from their medical record.’
(ID: 300113)
The information remained part of a ‘secondary’ medical record available only to the GP. In a few cases, the medical chart (paper or electronic) included confidential sticky note sections to facilitate this strategy. Other GPs used specific codes that only the GP understood:
‘Like if somebody’s smoking dope and I’m afraid that by recording that in the chart it’s going to say, you know, have some adverse effect on his career, and yet it’s important for me to be aware of because it impacts on his weight or other, or lung problems, then I have little codes that I use to myself so that I’m going to know what it is, but it wouldn’t necessarily be obvious to a casual reader.’
(ID: 301545)
This strategy of restricting access to information was more common for non-MH information.
Including but neutralising stigmatising information
For both MH and non-MH information, GPs used a strategy of neutralising sensitive information to avoid stigmatising patients or offending patients who accessed their records. For example:
‘I think I’m sort of being much more careful about the kind of words I’m using, because sometimes either the patient gets a copy of the note, or let’s say the patient’s record ends up at another doctor, and the doctor says “Oh, Dr Smith said ...” “He said that?” Or, yeah, I mean whatever way the patient may get the information, sometimes they take offence.’
(ID: 302559)
GPs using this strategy often kept their notes vague on sensitive issues so that other providers would not know details but the general issue was available in the record for follow-up if needed. As one GP stated:
‘I alluded to something that happened without being specific and that essentially was the patient telling me that there’s incest in the family ... So you allude to the fact that her trust was violated by someone close to her. That is vague enough that you don’t really know what’s going on unless you know the patient, and that’s on purpose, because the patient doesn’t want that to be known by anybody, for confidentiality reasons. So in a way I included a veiled reference to this and that can be explained if the patient chooses to explain it to the doctor. I know what it means and we leave it at that.’
(ID: 107721)
Including stigmatising information to facilitate continuity of care
Including stigmatising information was most common for MH information, yet almost one-third of GPs who addressed how they manage sensitive non-MH information also included it in the medical record. For MH information, GPs referred to the need for providers to be aware of comorbidities. As a GP explained:
‘I think most of the times I do end up recording it in my note when I encounter patients with these types of issues. Because, I think, overall, you know, this is very important ... especially patients with diabetes, you know, there’s like a very high percentage of depressions, comorbidities …’
(ID: 110057)
For non-MH information, GPs who included stigmatising information felt it was important for them to remember this information in order to manage the patient effectively, even if the patient requested that it be excluded. In a GP’s words:
‘I think anything can be part of the medical record, as far as I’m concerned. Even people who have told me “This is strictly confidential, I don’t want anyone to know”, they often tell me that they’re a lesbian or they’re sexually abused by someone. I always make a note of it, though, because otherwise I won’t remember it so I won’t be able to take care of that problem.’
(ID: 201050)
A few GPs who included all information explained that medical records were protected by privacy laws that prevented stigmatising information from being released:
‘But because the chart note is protected by HIPAA [Health Insurance Portability and Accountability Act], we really do need to put down information, even if it’s confidential, like sexual history.’
(ID: 203357)
