In-depth interviews
Level of comfort with disclosing sociodemographic information
Similar to survey participants, participants in the qualitative interviews expressed feeling most comfortable disclosing language, and least comfortable with disclosing household income, followed by sexual orientation and education. When asked why they and survey respondents might have felt more comfortable with disclosing language in the context of a healthcare visit, interview participants expressed that this was likely the case because it would be important for physicians to know the patient’s language in order to communicate with the patient and deliver optimal care in the context of a personal healthcare visit:
Because… if English isn’t really your first language and you want to speak to a doctor it’s very important that they know that so they can get somebody to…translate or something like that, so it can avoid confusion and frustration…
Interview participants discussed that they were less comfortable with disclosing income and education because they did not think that socioeconomic position should affect immediate healthcare delivery, and expressed concern that such information may be used to judge, pity or even discriminate against the patient.
Interview participants viewed recent immigrants as perhaps more likely to be comfortable with disclosing information about socioeconomic position (e.g., income or education) because they may come from cultures that are more trusting of the need for this information, and/or because of their recent experience with disclosing various types of information during the immigration process, compared to native-born Canadians who were viewed as more protective of their personal information. Interview participants felt that younger individuals would be more comfortable with disclosing various types of sociodemographic information than older individuals due to a generational effect in which youth culture is more open to communication compared to older generations, and tends to be more involved in social networking and information sharing on the internet. Interview participants suspected that females were generally more private and hence more suspicious of how data would be used.
Factors influencing disclosure of sociodemographic information
Interview participants were asked to elaborate further on why they and others may or may not be comfortable disclosing sociodemographic information in healthcare settings for equity measurement purposes, and a number of inter-connected themes emerged.
Concern for discrimination/stigma
Many participants discussed a concern that disclosure of sociodemographic information, in particular, income, education and sexual orientation, in the context of a healthcare visit may lead to discrimination or judgment on the part of the healthcare provider, and that this would negatively affect their care.
And why do they need to know it?…Now I have 6 or 10 different people knowing about my life… about how much I make, where I went to school because a lot of people, we are in a society where you are judged about who you are, what you do, where you came from, what language do you speak …what do you do for a living and how much do you make.
A number of interview participants felt that disclosure of sexual orientation would lead to discrimination in the context of a healthcare visit, and particularly among members of the lesbian, gay, bisexual, transgendered and queer community. One participant described that a friend felt she had experienced such discrimination while visiting her same sex partner in the hospital.
My good friend actually was just in the hospital a couple of weeks ago and there was myself and her wife there and…she obviously wanted her wife to be there and they actually like refused…apparently that wasn’t okay or something like that to have two women together.
Concern regarding relevance of data collection
Interview participants were more open to disclosing such data if there was a sufficient explanation for the use of the information. As mentioned earlier, many assumed that this information would be collected in regard to their immediate care and therefore felt that it would only be necessary if relevant to diagnosis/treatment.
I don’t think it’s important…we’re all people, we all need care…but… maybe that doctor does know more about you know, if there’s certain diseases in, that ethnic background than others… Maybe he is better qualified.
A number of participants questioned why they would need to share such data with healthcare staff.
It depends on why they want it… that would be my first question. But I have probably given all that, information in the hospital, before surgery…automatically because you get these forms thrown at you… and I think I have probably filled them out, just done it… not even thinking, and then I’ve thought afterwards, what the heck did they need my income for? Because they don’t… as far as I am concerned. But give me a good reason you know, tell me why.
One participant articulated that collection of such information would only be justified if background information was needed for immediate care during a healthcare visit or for the purposes of research on health-related issues or conditions.
…Only where it might specifically pertain to the reason the person is seeking medical treatment. …So…on two very narrow contexts do I actually think that information should be gathered. Unless there is a study like this you know, or a study pertaining to something health-related where … on a voluntary basis someone would say you know,… ‘We’re doing a study on… heart attacks you know, are you interested in participating’?
Only a few participants seemed to appreciate the relevance of sociodemographic data collection for monitoring purposes at the population-level, but for many of those participants, they did not see it as relevant specifically for equity measurement purposes, but to understand which populations are accessing the healthcare system.
I think…it gives…a good sense of knowledge of who’s being dealt with. It also gives more statistics I guess in general to know you know, if there’s lower socioeconomic people they’re dealing with, if it’s you know, higher income status and that as well sexual orientation… it might get better statistics overall in terms of who they’re actually tracking…
A number of participants emphasized that it should be made clear to patients that the data will be used for research purposes, and the benefit to Canadians of disclosure should also be clearly explained. Otherwise, some were concerned that their information would be used for reasons of which they would be unaware.
I don’t think I would have a concern about it being misused if I was told up front that this information is being gathered in order to optimize health services, but I certainly would have a concern that this information would be used for purposes other than the venue for which you’re gathering it…
Several interview participants were concerned regarding confidentiality of the personal information that would be collected. For many, this would be a deciding factor on whether to disclose. Over half of the participants were concerned with security measures for the data collected specifically in order to prevent identity theft, and many expressed general concern regarding security and privacy of personal health information in general.
I don’t think that you can guarantee 100% absolutely privacy, I don’t think that’s ever going to happen because there’s breach of privacy all the time…our information is stored on computers, people have the ability to access these computers whether you’ve got 7 passwords… or not, there are always going to be people who can access the information.
I think sometimes too, because… the state of our media… anytime there is any kind of problem or a leak of something, or… they find some medical records in a garbage pail somewhere or something… it’s the front page and…it’s a big story…confidentiality is a huge thing and it needs to be really… regulated in making sure that it’s okay…
Suggestions for acceptable information collection methods
The majority of interview participants indicated that their preferred method to disclose sociodemographic information would be face to face with a family physician, should this information be collected. Many interview participants indicated that they would be more comfortable with disclosing this information in the context of an ongoing relationship with a family physician because they could trust such a provider to keep the information private.
I would say the family physician one…I would believe there’s more of a bond between the patient and the doctor whereas it’s not, all these other ones especially the clerk at a hospital…it seems, it’s usually very open when I have been to the hospital, there’s not much privacy so I am telling somebody about me…I want privacy.
Need for careful educational messaging to increase comfort
When asked what might lessen the concern over collection and disclosure of this information in healthcare settings, a number of interview participants suggested that an educational campaign would be helpful. This campaign should be very clear in its explanation of the purpose of the information collection and use.
Many participants cautioned that simply saying the information is needed and should be collected is not enough. Some of these participants emphasized that people would want to see how this information is being used, see how it benefits them personally and the population as a whole, and be assured that the information will be used, and not collected, stored and then forgotten. Furthermore, many indicated that the educational campaign should explicitly address security and privacy measures related to use and storage of the information collected. A few participants were unsure as to who should be the voice delivering the campaign message - government or healthcare providers. Some felt that the message should be tailored to specific populations:
…The way that message got framed would have to be really, really well done because… it’s not just enough to say ‘hey everybody it’s important that you share your personal information so that we all get great healthcare’….I think we live in a really skeptical age and…it might have to be not just one general message but it would have to be targeted to different audiences.
Practically speaking, a number of participants indicated that comfort could also be increased if it was assured the data would be collected confidentially and in a format that would prevent the need to repeatedly ask personal characteristic questions at all healthcare visits.