Table 4.

Sample excerpts illustrating the reasons for cross-source engagement

Verification
Excerpt 1: Colorectal cancer patient used the Internet to double-check information from physicians. Underscores how some patients may distrust the way physicians communicate with them.	Patient 1: [A] lot of doctors tell you what is textbook: “Oh gee, you know, I can’t tell the patient no matter what we do they are going to die.” They don’t want to put that on the patient. I don’t know if that is part of the medical teamwork that [is] drilled into their heads during college and stuff like that, but it is the wrong way to think…. Basically, I would tell anybody if you want good information, listen to your doctors…yes, definitely, and check everything out yourself. And keep your own records…. Like I said, I did my own research. But the way I come to that conclusion is after I do this – [downloaded from the Internet] last night over my numbness of my fingers. Okay you might have got rid of cancer this way but, hey, you didn’t tell me I can get diabetes, my liver could malfunction, I could get an infection in the other parts of the colon and urine tract. I have it all here so when I go back next week I will say to [my doctor], “Hey, remember the big long word you gave me? Hey, I did Yahoo again”…. Yahoo is very good.
Excerpt 2: Prostate cancer patient used the Internet to double-check information from physicians. Reflects a degree of doubt in physician recommendations, rather than overt distrust.	Interviewer: And, so, what source would you say was the most important for your decision making? Patient 10: The Internet—what we found on the Internet. Interviewer: More important than the doctor? Patient 10: I mean, the doctor was important. Let’s just say [they’re] about the same… [we used] the Internet to kind of verify what the doctor said, more or less. Interviewer: OK. Patient 10: You know, to make sure that he wasn’t out in left field with what everybody else was doing.
Excerpt 3: Breast cancer patient double-checked Internet information with physicians. Highlights a perceived lack of trustworthiness—not of the clinician, but of online sources.	Interviewer: You saw this on the Internet you said? Patient 40: Yes. Mayoclinic.com and cancerfacts.com became some of my best friends. Interviewer: Really. Patient 40: And I realize that you are not supposed to believe everything that you read on the Internet, which is why we printed everything and took them back to the doctor and said “I realize that you are not supposed to believe everything but this says this. What does this mean?” or “What is it for.” They were really good, they really answered our questions, and if something came up you can call them on the phone if you had to and we got that answer, they made me feel comfortable, they were reachable.
Clarification/Elaboration
Excerpt 1: Prostate cancer patient used the Internet to clarify information received from his physician. Reveals a sense of agency that prompted him to learn—in as much detail as possible—what would be best for his care.	Patient 12: The side effects, I believe, are the same regardless of how you treat it. It’s the only time in my medical history that the choice of treatment was left to me. Interviewer: Really. Patient 12: Yeah. So, from that standpoint I had to try to get some information as to which I thought would be best and, so, I did get on the Internet for better clarification of the choices and the side effects [described by my physician].
Excerpt 2: Breast cancer patient consulted non-medical information sources and discussed the information with her physician. Driven by uncertainty about what a specific treatment involved.	Patient 25: And when I found out I started reading up on the radiation; you get a little, about ten-page booklet on radiation and if you don’t understand it, you’re still in trouble…[and] some of the stuff I read about [in books and other sources], I didn’t understand. Interviewer: Did you have anybody to ask? Patient 25: No. I said well by then I got, I only seen my surgeon every Thursday every six months so I would write down little notes and for my doctor and so I asked him because if you forget, you’re in trouble because you don’t see them every six months. Interviewer: So what happens when you go and take the information? Patient 25: When I asked him, he do answer, he do answer it. That’s the one thing good about the doctor but you’ve got to know what to ask. A lot of times you don’t. You don’t really know what to ask.
Excerpt 3: Colorectal cancer patient discussed information from magazines and newspapers with his physicians. Prompted by mass media coverage of medical innovations and a desire for more detailed information.	Patient 18: Yeah. They would be put out by different organizations and you would see it in like a magazine or a health-related magazine or the Wall Street Journal would carry something like that or the New York Times and they’d say something like people who had adjuvant care had a 20% better rate than the other group, okay? Or, and this was lucky for me too, at the same time Erbitux was coming out, Avastin was coming out, so all those studies were in the news, that really helped me and I even suggested [to my physician], should I be taking this? Should I be taking that? Interviewer: Okay. So you would bring things back to your doctor? Patient 18: Oh yeah. And they would normally say, you know, you don’t want to use all your arrows at once. Save that. Save that. So that really was probably the best thing for me…it was in the news.
Emotional Support
Excerpt 1: Prostate cancer patient consulted formal support resources having learned about them from his physicians. Underscores how such resources can help to normalize the cancer experience.	Patient 7: And, [my physicians mentioned] Advocates and clubs that have gotten together, you understand, and a support system. So, [that I could] look for people with my type of cancer. Interviewer: And, did you do that, did you look for some support groups online? Patient 7: Yeah. Interviewer: Did you find them? Patient 7: Yeah, a lot of them. Interviewer: Did you find them to be helpful? Patient 7: Yeah. Because, first being diagnosed with cancer you feel like you are the only one in the world with this problem, then you find out that it’s a world wide problem, you feel a little better obviously knowing that other people have gone through what you are going through.
Excerpt 2: Prostate cancer patient learned from a nurse about the value of connecting informally with other patients. Emphasizes the role that supportive others can play in the decision-making process.	Interviewer: Yeah, okay. So talking to other people really helped you? Patient 22: Yes, support groups were really good. Interviewer: Now did you go to a formal support group? Patient 22: No. Interviewer: Or just people around you? Patient 22: People around me, like I said the nurse [mentioned that I could reach out to other patients]. She was…really good. Interviewer: Right. Did you…when you were talking with other people who had gone through [prostate cancer], did you look for them or did they come to you? Patient 22: I knew that guy had the problem, I searched for him. Some acquaintances from high school and they gone through it, then they gave me another name and I went after that name. Interviewer: Okay. And you found again, talking to people was useful to you in making your decisions? Patient 22: Yes.
Directed Contact
Excerpt 1: Prostate cancer patient directed to brochures/pamphlets by clinicians. Describes an information acquisition snowball effect.	Patient 22: I started to do a small amount of things on my own. Interviewer: Like what? Patient 22: Just reading about [cancer]. I got some material from [my physician’s] office that I brought home. Then after the biopsy, they gave me more. I went to the cancer center and they gave me more. Then it started to snowball.
Excerpt 2: Breast cancer patient directed to magazine articles and books by family, friends, and clinicians. Underscores how directed contact can be tremendously valuable yet can also approach information overload.	Patient 13: Oh yeah, it’s amazing. People are so really wonderful. Everybody is supportive. Everybody sent you articles, actually from magazines. I was getting magazine articles from my nieces and nephews and just everybody had things that they were looking up on what to do, things that were helpful for you.… Patient 13: [I] had at least three different books people had given me. You become overwhelmed with information when this strikes. Everybody who has ever had cancer or anything starts giving you books and actually at…the cancer center where I was going, they have a library there and they gave me books from there too to take home and read, so I had lots of books.
Excerpt 3: Breast cancer patient received information on recommended physicians and hospitals from her social network, both with and without solicitation. Suggests that directed contact may encourage some patients to actively engage in information acquisition—including those who are otherwise more passive information gatherers.	Interviewer: It seems like you had a lot of social resources of people who went through it before you. Did you search these people out or did they come to you? Patient 42: I would say half and half. And also I read up a bit on things. But I am also – in today’s world that is not too great – I am a creature of “go with the flow” or that I feel good about something and I would just go with it. I am not like a researcher…I am in some ways but in other ways I just felt comfortable.
Proxy/Surrogacy
Excerpt 1: Breast cancer patient turned to her daughter to acquire online information on her behalf. Reveals that some patients do not have computer access or the computer literacy skills necessary to search the Internet for cancer-related information.	Patient 42: I had my daughter go on the web, because I am computer illiterate, and see what they had to say about these drugs that I was taking…. Interviewer: Did you find the web…useful? Patient 42: I think that if I was computer literate I probably would have been on there 24/7.
Excerpt 2: Prostate cancer patient described how his wife sought online information on his behalf. Underscores how proxies can shield patients from an avalanche of information that might prove overwhelming and upsetting.	Patient 33: [When] I was diagnosed with prostate cancer, at least for the first couple of weeks I was almost just turning in circles. I was so upset. [My wife] was able to do research and find the best people or supposedly where the best hospitals were….and also researched studies. When I talk about my wife, she really was the person to research where and what hospital they were doing various things that I might participate in, even if they were experimental. So she did a lot of reading, a lot of reading on the Net and discovered that there were a lot of trials going on in various places…. I could not – literally I could not focus on doing research. Usually I am a very good detective in my job, trying to find out information and who to contact and things like that. But I couldn’t do it, I just couldn’t focus. If I focused on it was right in front of me every minute, every day and I was trying to put it in the back of my head. Interviewer: Okay. Patient 33: I know [cancer] is there, I know I have it but I didn’t want to look at it. And every time I started to do research and read this stuff I was very focused on it and I just couldn’t do it. She was fantastic.
Excerpt 3: Prostate cancer patient described his daughter’s role in seeking information on his behalf. Highlights the ways in which medical decision making is often a collective rather than an individual process.	Patient 15: My [adopted] daughter…became an expert in prostate cancer. Interviewer: Oh really? Patient 15: She decided that she was going to become the expert and she handled all the research along with a lot of the media information and the relevant paperwork. She spent hours on the Internet looking up and finding things and then printing them out and giving them to me. Interviewer: Wow. Patient 15: She went with me to the doctors, as my wife did. All the decisions were family oriented.