Patients ranged in age from 48 to 71 years of age. Most were white and male. Two-thirds were Internet users (used email and/or the Internet). All had some college education. The 5 physicians and 7 primary-care nurse practitioners participating ranged in age from 46-60 years (see Table ).
Characteristics of focus group participants
Overview of findings
Patients and providers perceived important informational and educational benefits of the proposed electronic outreach. Several providers expressed substantial privacy concerns related to the social stigma associated with HIV. Patients, for the most part, did not perceive HIV messages to be inherently more sensitive than messages about diabetes and cholesterol. Providers anticipated increased workload and made recommendations for message content in order to minimize disruption to primary care practice.
Perceived benefits for patients of screening messages in general
The more information the better
Patients and providers perceived that electronic disease screening outreach would improve patient access to useful health information, with important educational value. For providers there was a perception that it would reinforce messages they give to patients. Patients seemed interested in more information, and saw this outreach as a potentially good way to achieve this goal. Here, a patient expresses his view that too many people take their bodies and their health for granted, and that the messages proposed could help combat this complacency.
"I think all this information would be great. Because I think how else are we going to know what to do with the only true asset we own [which] is our body. And some people spend more time getting the oil changed in their car than they do worrying about what's going on in [their bodies]." (Patient FG2)
Providers realized that their repeated recommendations to patients to be screened lose effectiveness. Using a new medium, i.e. the Internet, could be a useful adjunct to what providers are trying to communicate to their patients.
"I think for established patients, this is reinforcing education. The last sentence [of the draft text shown to providers], 'Cholesterol can be lowered,' they're hearing that all the time from us. And now they're reading it, so [it's] another teaching tool." (Provider FG2)
Information using lay language and available when patients are ready for it
Patients could imagine scenarios in which disease screening information provided electronically would be better than verbal information from their doctor. The patient below knows there are times when other factors, in this instance substance use, interfere with his ability to absorb important messages from his doctor.
"Let's say I went in from detox. [My doctor] might be saying all this stuff to me but I might be in a situation where I'm like, 'I ain't listening to all this stuff at this point now.' When my head starts to clear out [I might think] 'Okay. What did this doctor say?'" (Patient FG2)
An electronic message gives the patient another opportunity to receive the information, and the choice of when and how many times to read it. These messages can be carefully worded to accommodate low literacy levels, as expressed by this patient,
"If you put [the web information] in layman's terms pretty much explaining LDL or HDL...and how you get it, [that's better than having] $20 dollar words in there." (Patient FG2)
Messages can motivate patients
Patients felt that electronic outreach would motivate them to be proactive about their health. Most felt the electronic messages would remind them to be screened, or at least contemplate getting screened. Here a patient finds the idea of an email about HIV screening to be non-threatening, and potentially motivating.
"They're not telling you [you have to be tested for HIV]. They're putting it in your mind saying... "Have you ever thought about getting HIV testing?" It's non-offensive. You're not prying. But it gets you thinking. Something like that might work." (Patient FG1)
Below, two patients, discussing diabetes screening, conclude that outreach messages would be valuable, despite their different perceived risk for the condition. The first realizes that a common "if it's not broken, don't fix it" attitude, may prevent people from thinking about getting preventive testing.
"As far as [an email] prompting you to go and get [a test] done, yeah there's probably people that aren't even aware that they should have them. Up until five years ago, I never thought about getting my blood sugar checked. What do I care? It's not bothering me any." (Patient FG2)
The second patient has a family history of diabetes that he/she might inadvertently ignore. Periodic reminders can be the extra motivation to take action and get tested.
"My father has diabetes. My mother is borderline diabetes [sic]. I've been checked periodically through the years and I don't seem to be having it...It might slip my mind where I'm not thinking I'm going to get it...and then all of a sudden I see [the electronic message about diabetes screening] and I say, 'Maybe I ought to go and have it checked.' So it's kind of like a kick in the pants." (Patient FG2)
HIV content: patient acceptance, provider wariness
Our focus group questions sought to contrast electronic outreach for non-sensitive conditions (i.e. diabetes and cholesterol) with HIV, a stigmatized condition. Few patients, however, made this distinction. Patients thought electronic messages about HIV were acceptable and useful, especially if they were clearly written as public health announcements for wide distribution. One patient likened HIV information delivered electronically through the PHR to posters about HIV testing found in many VA medical center waiting rooms; while another felt that because the material was for a generic patient audience it would not raise objections:
"I wouldn't mind [getting a message about HIV testing]; it's pasted all over the walls of the VA. I mean, I think the information is good." (Patient FG2)
"None of this is laden with any personal information on yourself or anything like that...I can't see any of this being upsetting to anybody." (Patient FG2)
A third patient, however, speaking about messages sent to personal email addresses, was worried about possible security breaches and the stigma of being associated with HIV. He suspected that once information entered his computer it would be difficult to erase, thus allowing later users to find such messages.
"I don't want 'You get tested for HIV' [in an email]... I've given away computers I've had to people who never had one... They can get into your mainframe, as you folks may know. They can find stuff that you left in there. I'm not taking that chance.... I'm very careful about what goes in my computer. I have a disk that I put everything on. I don't let it go on my mainframe. But some stuff goes in there. You think I want to take a chance and let HIV go in there? And they accidentally find it? Hell, no!" (Patient FG1)
This type of concern supports placing the disease screening messages on the PHR website, rather than delivering it directly into patient email inboxes. This sentiment is summarized by a patient in the first focus group (referring to the PHR by its VA name, "My HealtheVet"):
"I would like to see [a message in my personal email stating] "You have messages at My HealtheVet." That's all I want to see. Just tell me to go My HealtheVet website, log in and I get messages there. I'd rather see a message there than coming into [my personal email]." (Patient FG1)
Providers aired substantially more concerns about HIV messages than patients. Some providers felt that patients would be irresponsible with emails containing HIV-related content. The provider below, for example, described how patients easily find doctor email addresses, and could send their doctors inappropriate email. The provider expresses two issues: the risk that the patient becomes associated, in other people's minds, with a stigmatized condition, and the risk that providers get criticized from their employer for participating in inappropriate email use.
"I see a lot of problems with this, because there are going to be some [veterans] who aren't thinking about confidentiality. And they're going to be emailing their provider, which is 'my name-dot-VA-dot-gov'; And they're going to be saying 'Oh, I got this thing on HIV. I think I should be tested.' And it's going to be out there in the Internet world, floating around. And the VA is going to get dinged - or me - for 'Oh my God, why did this person email you about this?'" (Provider FG2)
This provider expresses the view, correct in some instances, that regular email messages are vulnerable because they "float around" in the Internet easily opened and read by other Internet users.
Another aspect of provider resistance toward HIV-related emails was that they could create suspicions among patients that the VA is withholding information from patients:
"And I think if you sent them an email, there are some people who might be walking in the next day, 'I got this email that told me to come in and be tested!...Why are you worried?...Why'd you send it to me? Did you send it to anybody else?'" (Provider FG1)
This view may reflect provider sensitivity to claims by veterans and active duty military that the US government releases too slowly important health-related information, especially for risks related to military service [30
Finally, another provider's hesitation was that the HIV message was inappropriate because it was promoting a substantial deviation from the way providers recommended HIV testing. One provider remarked, "...this third [message] on HIV is like a bombshell," because it recommended routine HIV testing. Providers had described in the first focus group that they typically recommend HIV testing to their patients only if risk factors were present, i.e. intravenous drug use or men having sex with men. A consequence of these concerns seemed to be that providers preferred, if an outreach program were conducted, that content be posted on the PHR website, rather than transmitted via email. Patients and providers approved of a "tickler" email message to patients that would indicate there is new content on the PHR, with a hyperlink to the PHR website.
Perceived provider burden
A prominent provider concern was that electronic outreach for disease screening would lead to unmanageable workload. They anticipated the outreach would result in a substantial increase in patient phone calls, time spent explaining and clarifying the outreach program, and additional appointments.
"If the VA is going to send out a newsletter [about disease screening],...especially if you're sending it electronically,...you're going to get this flood of phone calls the day it goes out, and probably the next week. And, if you're not prepared for that, you've got to have your telephone staff prepared. You have to have your primary care nursing staff prepared, your primary care provider staff. Because these things have this, like, volcano effect." (Provider FG2)
One provider suggested that the messages should contain preemptive language to discourage patients from immediately calling or visiting their provider:
"If you maybe send out [an electronic] newsletter [to patients that says] '... your provider will be asking you for A, B, C, D, E, F, G at your annual - highlighted, underlined, in bold, different color - visit', so [the patients realize] you don't need a PSA every time you come to the walk-in." (Provider FG1)
These providers did not reject the electronic outreach initiative, but have suggested that to be successful, it would be wise to make advance preparations with staff and to include education of patients that indicates this is not urgent and can be handled at annual - or other regularly scheduled visits. Other providers concurred, but also reflected a feeling that PCPs are being shouldered with increasing demands and performance measures, often without increases in resources:
"How can I do this? I want to be doing X, Y, and Z, and you're adding another element that I'm responsible for." (Provider FG1)
Patients, interestingly, did not indicate they would rush to contact their providers or make appointments to see their doctors as a result of electronic messages. In fact some patients believed that if the electronic communication had links to more information it might actually save doctors time:
"If you need more information...instead of having an hour conversation with the doctor and having the doctor teach you, you could actually go to a place on [the patient website for more information]." (Patient FG2)