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Table 2 Focus group themes

From: Development of the PRE-HIT instrument: patient readiness to engage in health information technology

Theme Definition Supporting quote
Barriers
Privacy and security concerns Multiple participants, both users and non-users shared this concern, although experience and expertise with computers seemed to dispel concerns for some users. Participants expressed concern that personal information could be leaked when they accessed a website or entered personal information into a system. In addition to fear of privacy infringements, participants were also concerned that viruses, cookies, phishing and spam might lead to security breaches such as identity theft. Users discussed these possibilities as wary consumers while non-users abstractly referred to stories that they had heard in the media that may or may not be relevant, such as a highly publicized Ponzi scheme scandal. “Cause like there’s a lot of other people out there in the world that, take for instance if I was getting on the internet and so and so said such, the other person’s name, their last name, social security number, you can get all that stuff down from anybody, and it’s dangerous.”
“I don’t ever, ever use my identity on there [internet] because there’s a lot of viruses’ going on and people just log right in.”
Poor computer and search abilities Non-users described gaps in knowledge and abilities that limited them from accessing the internet, including poor internet navigational skills, lack of virus protection leading to poor computer function, and inability to set up their computer and/or internet access. Both users and non-users expressed that difficulty with spelling could hamper searches, and that it could be difficult to find the information that they needed online. Many expressed that the amount of information on the internet could be overwhelming. “Oh, yeah. I had to get over that, and my daughter says it’s just like the keyboard of the typewriter and, you know, you just gotta know how to do it.”
“You know, yeah, you look it up, you look it up and then you don’t know where to click, you know, and stuff like that. That, then it confuses you and then it just, you know, has all those kind of things, you know, written down and I thought “Oh, my God.” It’s just frustrating.”
Preference for the health care team as a source of information Both users and non-users thought that information from the doctor was superior in validity and quality to most information that could be found by them on the internet. They also valued their relationship with their doctor and felt that the doctor served needs that could not be addressed by the internet. Some internet users still sought health information on the internet but it was not used as a primary source of information and the patient often would consult with the care provider to verify information. “I want something more than that [internet search]. Maybe I want the hands on, you know, and I don’t get the hands on from a computer. I’m sorry. I just don’t get the same feeling from that.”
“Yeah. I always have to have that doctor to reassure me. A computer couldn’t take the place of a doctor for me.”
Anxiety about what information might be found on the internet Both user and non-user participants had concerns that information found on the internet might increase their anxiety. For example, many stated and agreed that information about medication side-effects might lead them to imagine that they were having those side-effects. Similarly, looking up information about symptoms might lead them to discover a deadly diagnosis. For internet users there was often a tension between avoiding information which might provoke anxiety while also feeling a need to gather more information. “…and I said “Once I heard about malignancy and early death, I don’t want to hear any more.” And he said “Well, I didn’t want to say that to you, but I wanted to give you the option to find it.” So we can sometimes not want to look in places that we don’t want to find out certain things.”
“First time I read it, you know, did it all, like on all three websites just telling me all this stuff that could be wrong with me, you know, I’m like “Oh, my God, I’m gonna die,” you know.”
Facilitators
Need for information Participants described that often their desire to find information was triggered by an event creating a specific information need, which prompted the participant’s utilization of the computer. Participants frequently reported a need to obtain information that could help explain a symptom. Participants also reported wanting to learn ways to deal with health issues utilizing “alternative medicine” methods. The information need provoked anxiety, and if this need could not be conveniently or adequately fulfilled by trusted sources, such as the health care team, friends, or family members, then users turned to the internet. They might also triangulate the validity of information based on multiple sources. “Well, I fell a couple weeks ago and I really don’t know what happened. We think it was insulin reaction, but I felt bad enough that I went to the hospital. And so I have, you know, kind of looked up, looked that up.”
“Matter of fact, [Doctor Name], and don’t ask me for [Doctor’s] name, she’s a diabetes doctor, told me about a site to go to for we’ll say home remedies for fungal infections of the feet and that kind of stuff, but basically other people will say “I just read an article on,” and I will say “Where was it?” “Medline?” and then I can go find that article.”
Desire to be a more active participant in own care While not common, a few participants strongly expressed that the knowledge that they gained on the internet was a type a power that they used with the doctor to improve their own care. Some expressed that they felt they needed knowledge to more effectively converse with the doctor or to make the doctor take them more seriously or spend more time with them. Others an active role in their own care coordination and management, updating their care team on changes in their health, and learning about behavioral changes and other interventions for better chronic disease care. I want to be a little bit smarter, too, and I don’t want to just wait, like Dr. [name] was like “Well, I’m gonna examine you, but is there anything else you’d like to address,” and I was saying nothing before.”
“If I read something or become aware of something one way or the other, I’ve always checked it out with my primary family practice physician, who has been very good about giving me an opinion as to what I’ve said or, or when I’ve brought up, and that’s worked out real well for me.”
Convenience Whether using the computer to communicate with the health care team or to look up needed information, the computer and internet were felt to be very fast and convenient for established users. Non-users also recognized this convenience, but lamented that it was not available to them. “Well, I use the internet a lot for information regarding health relations, treatment plans. My favorite sources are hospitals that publish patient teaching education. I try to make sure the site is authoritative and not Wikipedia, those kinds of things. I contact my physician with questions.”
“As I say, it’s just a world of information out there, and that’s one of the fastest way of getting it now, what used to be telephones, write a letter.”
Looking for information for or about others For most users, looking up health information on the internet was an activity that they did almost as often for family and friends as for themselves. In situations where the user was a caregiver, they might even do more searches for health information for loved ones than they would for themselves. Obtaining information for others seemed to be one way that friends and family members involve themselves in caring for people they care about. Additionally, users may look up health information about the conditions of family and friends because they have a relative lack of information about the family/friend health condition, compared to their own health condition where they would receive information directly from the health care team and have an opportunity to have their question answered by the health care team. Similarly, non-users reported that family and friends would look up information for them. “I have a friend who has schizophrenia, and when I was first trying to find out more about that ailment. I knew very little. ”
“…my husband has diabetes and strokes, and he’s wheelchair, and my mother is going through chemo for the second time…if there’s something I’m not familiar with, if there’s something I question about what the doctor’s told me, you know, prescriptions, you know, different drugs and exactly what they are, that sort of thing.”
Barrier & Facilitator
Asynchrony Asynchrony occurs when communications are not occurring directly or in real time. This communication between patient and the care team can take place electronically in the form of emails or secure patient portal communications. Patients had divided views of this asynchrony. Some viewed it as a barrier similar to privacy/security because they were not sure where their message would go, who would see it, and when or if they would get a reply. The opposite view reflected the convenience of this asynchrony, with the doctor/nurse and the patient themselves being able to communicate at a time that was most convenient or comfortable for them. “I don’t want to add another [task], I look at them sometimes run from room to room, and thinking and do you expect them to custom answer my email? And I know one of the downsides of email is the sender never knows how many the recipient is getting…but each person thinks you should give a response immediately, and it’s not possible.”
“Because you can do that, you know, a lot of times I’m up quite late, so at 1:00 in the morning…I can do it right then because, you know, a lot of times during the day I, I don’t have time to do this. It would just be able to do it on my time and when I’m, when the house is quiet and I’m able to, to concentrate a little bit more.”