Forty three physicians registered to participate in the focus groups, and 37 showed up. This amounts to an 86% participation rate, which is slightly higher than the participation rate we had assumed in the design (40/60 at 66%).
The 37 participants had a mean of 16.3 years of practice experience, with a maximum of 43. The overall family physician population summary data from the 2007 National Physician Survey (NPS) [88] reported that the mean years of practice experience was 19.6, with a maximum of 55 years.
There were 24 female (65%) and 13 male (35%) participants. The 2007 NPS reported 60% of family physicians are male and 40% female.
The distribution by province was: 18 from Western Canada (49%), 14 from Central Canada (Ontario and Quebec – 39%), and 5 from Eastern Canada (13.5%). The 2007 NPS reported that approximately 35% of family physicians practice in Western Canada, 59% in Central Canada, and 9.3% in Eastern Canada.
Compared to the physician population, our participants had slightly less practice experience, and were more likely to be female. Furthermore, physicians from Central Canada were under-represented whereas physicians from other regions of the country were over-represented.
The results for the questions on which types of fields the physicians would be willing to disclose are provided in Table 1. There was strong reluctance to provide patient names, a weak willingness to provide dates of birth, postal codes, and initials, a moderate willingness to reveal their own names, the number of patients in their practice, and clinical information about the patients, and a stronger willingness to share patient sex, the total number of patients seen during the reporting period, and the practice postal code. The least consensus was in their willingness to share the patients’ postal codes, date of birth, initials, and the most consensus was on their willingness to disclose the patients’ sex.
If we assume that the willingness to disclose is positively associated with perceived sensitivity of the information, then there was the most consensus on the least sensitive fields, and less consensus on the most sensitive fields. This would be the expected pattern.
We grouped the following items: (a) items A1 and A2, (b) items A7 to A11, and (c) items A14 and A15. Those in group (a) pertain to the patient’s name, and the participants didn’t see much difference between disclosing the first and second name. The items in group (b) pertain to underlying conditions. The participants treated all of the underlying conditions equally in terms of willingness to disclose and did not provide an indication that they differ in their sensitivity. The items in group (c) pertain to summary information about the practice. Group (b) had a consistency ratio below 0.1 (consistency does not apply to the other groups with only two items).
Table 2 shows the willingness to share less/more information under certain conditions. The factors that had little impact on their willingness to disclose information to public health were: linking the data to other data sets, whether the public health unit was provincial, federal or municipal, and the type of condition or disease that was under surveillance. The factors that had the largest influence on their willingness to share information were: their commitment not to share the data with other parties, and whether the reporting was mandatory. Other factors that would have an important effect on their willingness to disclose information included if the data was de-identified, if their Colleges endorsed the disclosure, if feedback was provided, if the disclosure was only for a limited period and afterwards the data would be destroyed, and if a research ethics board approved the data collection. None of the factors would actively dissuade them from sharing data, but that was largely a function of the wording of the questions.
The following items had a mean absolute difference smaller than one point and were grouped: (a) B1 and B2, (b) B5 and B6, and (c) B10 and B11. The items in group (a) pertain to the jurisdiction of the public health agency. The physicians did not differentiate between federal or provincial jurisdictions. The items in group (b) pertain to exerting control over the data through de-identification, and limits on sharing with third parties, which they perceived as having equal impact on willingness to share information. The items in group (c) pertain to independent oversight, irrespective of who provides it.
We did not find any statistically significant differences nor associations among the participant profile shape, elevation, or scatter and the physicians’ years of practice experience and gender. This means that variation in years of practice experience and gender do not explain variations in the participant responses to the questions.
The qualitative findings are organized into six themes. Each theme presents a coherent issue, although it may cover multiple constructs.
Some participants believed that the government and their requests for information and data were interfering with patient-physician relationships. Many agreed with one physician, who stated: “We have to remember that as family doctors, we have a real responsibility to the patient…What are the patients going to start thinking about, you know, where are they getting this information? Who is telling the government or the newspaper about me? Or my family or the neighbour? So I think we have to really, you know, be careful of the patient [who] comes to us, they trust us. They want to have trust in us, and there is nobody else that can fill that role other than the family doctor.”
In particular, this issue of trust and the patient-physician relationship was of concern to physicians serving aboriginal or minority populations: “I mean, you may find, depending on ethnicity of the people we work with, whether they are First Nations or whether they are, I work with a fairly … large immigrant population, and there’s sometimes complete lack of trust, you know, depending on, especially if you start tracking demographic data. People sort of start to wonder, right, what’s happening.”
Our participants were also concerned about patients possibly complaining about them or suing them, if they inappropriately disclosed information. One participant told a story of being contacted by a patient’s lawyer, after data was abstracted from the patient’s chart and entered into a provincial registry.
In the focus group discussion, a not insignificant amount of mistrust between physicians and “government authorities” was also apparent. Specifically, some participating physicians were concerned that the data that they provided to public health was being, or would be linked to their performances as physicians: “I could see some [physicians] being a bit concerned…if [data] were linked to some performance evaluation, like, are you not picking up enough…” and “I have a few letters from the ministry over the years, telling me that I was more than two standard deviations outside the norm, but I do palliative care, so I do too many house calls apparently, because I do home palliative care, and you get a couple of those letters, and they ask you to justify your practice, and it makes you feel a little bit paranoid about, you know, big brother watching.”
Furthermore, the weak data handling practices of organizations that collect data from physicians have amplified this lack of trust: “I think there is a great deal of mistrust between physicians and the bodies that collect data. In [our province], every time we write a prescription, and the patient takes that prescription to a pharmacy and the prescription is filled, it enters to the [central pharmacy] database. And the provincial government has been working very hard to link the medical services plan, physician billing data, [central pharmacy database], and hospital data. And they ran into some really serious privacy concerns [linking] those administrative databases at the patient level, or even at the physician level without consent… The problem is there has been several scandals in my province where hard drives, or laptops or documents that should have been shredded have been discovered, turned over to the media or you know have been, have been not adequately looked after … you have one or two of those mistakes and immediately everybody says, oh well, you know, we can’t trust that all this data that we’re sending up the food chain all the time is actually being properly managed.”
Poor data handling practices and breaches by government data recipients, even if they are not at public health agencies, have made some participants concerned about disclosing health information to public health.
When disclosing data to public health where direct contact with the patient would not be necessary, for example, indicator-based surveillance efforts for situational awareness, the general consensus was that the data needs to be de-identified. Many of the physicians reiterated the fact that they “would be uncomfortable providing patient identifying data … if it could be linked personally to any of [their] patients, that is, [they] would be uncomfortable, unless it was … totally anonymous.”
Throughout the discussions, there was also variation in how patient information should be de-identified (for example, including or not including postal codes) and as such, the need for clear guidelines on what constitutes de-identified patient information was expressed.
De-identification by itself, however, was not seen as enough. Engaging the patients in the disclosure decision was suggested as “the patient needs to have a role in [the disclosure]. They need to say, that is okay”. Several of the participating physicians suggested the need for obtaining individual consent by stating that “confidentiality and privacy is not a mass issue, it’s an individual issue, so the individual should be informed specifically” whereas others stated that, “There has to be explicit consent, it cannot be implied consent. Just because I saw this doctor, the information will be transferred to public health. That’s not acceptable”. That said, many physicians also stated that obtaining individual consent was generally seen as not practical as “most of [them] don’t have the time to spend explaining patient consent for something like this.” However, other participants thought that the consent processes could be more general, for example, posters in the physicians’ offices notifying patients that their de-identified information may be released to public health agencies. This was seen as a more practical alternative to obtaining individual consent.
Where reporting of influenza or ILI is mandated, public health agencies require the disclosure of detailed information about the patient, such as their name and address. Some of our participants were uncomfortable providing such detailed information: “I think the bottom line for most family physicians is we will not share names, addresses, or phone numbers, period, without individual patient consent,… for the most part, what we would probably be willing to share is the de-identified, already anonymized aggregate data. I don’t think it’s realistic to expect any family physician to breach confidentiality and share information.” This is consistent with the literature showing under-reporting for notifiable diseases. Of course, contact tracing or other investigations that require public health to communicate directly with the patients would not be possible without identifying information. In such cases, some of the factors discussed below (such as articulating the purpose, data sharing agreements, and patient benefit) would be important to address the physician concerns about disclosing patient-identifying information.
Physicians were reluctant to provide certain types of patient data because they did not know for what purpose the data were being, or would be, used for and who it might be shared with afterwards. For example, one participant said, “Well I’m concerned about how they might use it….I mean if they use the data for their own internal operations, that’s fine, but if they want to share it with a non-healthcare agency, I don’t think that’s fine”. Likewise, another stated, “We should have the right to know why they are using [it], and what are the reason[s] for collecting and what the data is for.”
The majority of participating physicians also stated that if they knew how the data that they provided was being used, they would be more motivated to provide additional data: “If you see the end of it. The benefit from the data, so you see the results of the data being processed, then you might be more willing to join in to helping the gathering of the data”.
Participating physicians stated that they would like to have a comprehensive data sharing agreement with public health agencies prior to disclosing any patient-level data. Included in this data sharing agreement, physicians would like to see information about how the data would be used (for what purpose), how long the data will be kept, as well as who will have access to it. These agreements would not only provide the physicians with, “assurances that data will not be used for things beyond the use of the agency it’s going to” but also help to “get physicians involved”, and make them feel more “comfortable to comply”.
Participating physicians questioned how the data requested by public health agencies would benefit their patients: “What benefit would it offer to the individual [patient] for us to release their private health data? What does public health have to offer them that’s going to be of benefit to them?” and “Does public health really need to know this information? And can they show us a very clear pathway of how the information can either improve patient care or patient outcomes?” A stronger incentive than general benefit to the population was also seen as important. For example, one participant stated “Patients look to us to be their expert and to be their advocate. So, we, as physicians, are happy to provide the information to public health for the greater good for public health, for the country as a whole, but on the other hand, in return we need to be given something of value that we can give to our patients, so we don’t feel like we are compromising our patients.” Another stated, “As long [as the data] is going to benefit the patient, it shouldn’t just be for the sake of research or somebody’s PhD thesis. It has to benefit the patient.”
In the specific context of the H1N1 pandemic, participants questioned the benefit to their patients of disclosing information: “In a situation where, medication is unlikely to be a great deal of benefit, the immunization is arriving, you know, a bit late for it to be useful, what benefit would it offer to the individual for us to release their private data to public health? What does public health have to offer them, that’s going to be of benefit to them? A whole bunch of nothing, right ? So, so we are not in a situation where we can therefore justify releasing that information.”
This suggests that being clear about the uses of the data is a necessary, but insufficient condition for the physicians to be willing to disclose patient information. The link to patient benefit needs to be articulated clearly when information is requested, and has to be adequately demonstrated.
Historically, physicians have indicated that they have not received sufficient feedback from public health agencies [7, 19, 89], and many participants reiterated this fact in the focus group discussions. This insufficient communication often results in physicians who are unmotivated to provide the data. The lack of feedback to physicians was articulated by statements, such as: “The region I’m in, we don’t, we have to call public [health], we have to harass them to get any kind of information. If I happen to not watch the news that day, I’m less informed than my patients, as to what’s happening, you know, we feel like we have to run after them in order to get any information, and that’s specific to this, you know, this recent issue. But generally, I don’t feel like we get regular updates as to what is happening in the community. It’s like it is always a matter of take, take, take from us. And rarely do we get to see what comes of that”. Moreover, for those who have provided data to public health: “It’s just a matter of, or the fact that we keep giving them stuff, and we don’t get anything in return, we get no communication in return.”
Therefore, even if the purpose of the collection is clear, and the link to patient benefit is clear, the feedback to physicians has to actually regularly happen afterwards. In the context of the H1N1 pandemic, a typical comment was, “I think the only thing I have seen with the H1N1 thing is that we’ve had fairly poor communication from public health to physicians, I don’t know if anyone else has had that, but even our, our, our, our provincial head of the public health wrote us all a letter, and said if you got any concerns, you can email me or fax me, but then he didn’t provide any phone numbers or fax”.
The format of the feedback is also important. For example, in terms of information formatting, physicians would like, “Large format. Simple, easy to understand numbers”, “concise, something… [they] can read”, and “One page. [We’ll] read one page”. Several physicians also stated that they would like to control the quantity, type, and frequency of feedback and information they receive, and as such, an Internet-based information repository that is regularly updated with local information would be highly beneficial. For the most part, the participating physicians are particularly interested in obtaining clinically relevant information that they can use to provide better service to their patients: “So, clinically relevant information, so, for example, if [public health agencies] are seeing a larger volume in your community, that’s helpful to me, because maybe, for example, mine, it might look different. And public health is in the unique position that they are receiving all this information, but they may be disseminating numbers, and what we want to know is clinically relevant information. If you have that information, is it possible for you to package it in a way that for clinicians it is useful to us?”
On the other hand, there was also concern expressed about too much repetitive information being provided by public health [90]. For example, one participant noted “I’m on the other side where I’m being bombarded with useless flyers, useless [expletive] flyers, like I don’t want to open, like I see the email address and I’m at the point where I kind of briefly open it, then delete it … it’s useless and it takes so much time. They add in all of their letterhead, all of the little pictures that take, depending on where you are, you are using dial up internet that takes forever to download, … this is not useful. This is what we mean by useful information. Just text, that we can get anywhere, factual information and updates as to what’s happening, [the] repetitive hand washing posters are not helpful. I got it, I got it.”
