The large majority of the patients in this study were female (34/37, 91.9%). Approximately one fifth were under the age of 35 (8/37, 21.6%), and only four patients were over the age of 60. The majority were white (33/37, 89.2%), and 45.9% (17/37) had completed college. Asthma symptoms were experienced three or more times a week by slightly more than four fifths of the patients (30/37, 81.1%). In keeping with data that show younger people are more active in terms of using the Internet to seek out health information [33
], 67.6% (25/37) of the patients in this study indicated using the Internet at least once a week for this purpose.
All patients (N = 37) used the website before the visit with their physician; however, only 36 patients answered the questions regarding use of the website. While most of the patients (26/36, 72%) indicated that they brought a printout of the website feedback to the visit, overall only slightly more than half (21/36, 58%) told their physician that they had visited the website. When asked whether use of the website had influenced the outcomes of their visit in any way, 56% (20/36) answered affirmatively. However, with regard to this response, it is important to note that when patient experiences were explored in-depth, almost all patients indicated that use of the website had influenced the visit in some manner. Most participants rated the website positively: excellent, 25% (9/36); very good, 55.6% (20/36); good, 16.7% (6/36); fair, 2.8% (1/36); and poor, 0%.
With regard to the physician (N = 26) responses to the two close-ended questions pertaining to impressions of the website, a large majority of the physicians rated the website positively: excellent, 11.5% (3/26); very good, 50% (13/26); good, 23.1% (6/26); fair, 11.5% (3/26); and poor, 3.8% (1/26). In addition, slightly more than three quarters (20/26, 76.9%) responded positively to a question asking whether they thought that the website and its feedback would be useful in helping patients receive better health care. No demographic information was collected from physicians.
Overall, patients in this study found that having information from the website positively impacted their interactions with their physicians, and, importantly, while some patients reported some dissatisfaction with the website overall, no patient reported a negative encounter with the physician attributable to use of the website. Physicians also reported positive feelings about the website content, while at the same time offering suggestions for improvement.
Physician Impressions of the Website
Physicians were asked three open-ended questions regarding (1) what they thought of the website’s feedback section, (2) what suggestions they had for improving the website, and (3) what other comments they had about the website. There were 22 respondents. Physicians’ impressions were very favorable regarding the first question and are not summarized here. However, physicians’ responses to the other two items did highlight a number of opportunities for improvement.
The most common comment (n = 10) had to do with providing more specific information about medications:
Physician 16: Provide info and precautions concerning specific medications.
Physician 25: You may want to avoid using the term “steroid.” Perhaps tell the patient that a medication such as prednisone or Medrol might help their exacerbation. In my experience the term "steroid" can be a big turnoff despite trying to educate the patient.
Some physicians (n = 5) believed that the website could be strengthened through inclusion of even more specific information about asthma:
Physician 41: [Include] more patient education regarding control of triggering factors.
Physician 9: [Include] some basic information about the physiology of asthma that could explain how medications work, so that patients are more motivated to take their medications when needed.
Others (n = 3) suggested the addition of more visual aids:
Physician 24: A printout or prototype of an asthma management plan for the patient to review prior to physician consultation may be helpful. Also, charts of predicted peak flow values would likely be more educational for patients than written explanations of normal values.
Physician 55: [Include a] visual/schematic of peak flow, spirometry.
A number of other comments fell into no specific category and ranged from encouragement to keep the questions and feedback simple, to providing lists of asthma specialists in the area, to allowing for questions from patients and including an appointment schedule.
Patient Suggestions for Improvement of Website
A total of 37 patients suggested improvements for the website. Their feedback pertained to its not providing enough feedback, not providing new information, not giving feedback that was specific to the user, and not having enough scientific information. For example, some participants (n = 13) found that they wanted more detail in both the questions and the feedback, particularly some of the participants whose asthma was rated by the website as being “under control.”
Patient 336: female, age 34: [The website] didn’t come up with any questions or anything to ask my doctor. It pretty much just said, “Oh yeah, your asthma is under control.”
Patient 309: female, age 36: I expected more detailed questions [in the feedback section]. It seemed pretty general.
Another type of comment had to do with the website’s feedback not providing enough information that was new (n = 10). These participants were knowledgeable about their condition because they had either had the condition for many years or had spent time researching it using either the Internet or other means.
Patient 338: female, age 33: I’ve done so much research already that most of what it was telling me, I already knew.
Patient 321: female, age 35: I go to other websites and read about it to learn about it and um...I think if a website is gonna be used to help people ask questions, I think there should be a little bit more information about the asthma itself on the site.
In addition, some users (n = 5) perceived the feedback as not being specific enough to their own situation. While this opinion was only held by a minority of participants, these users felt that the feedback either too closely mimicked the original questions that had been asked or that the feedback was too general to fit their specific situation.
Patient 359: female, age missing: It may be that 90% of the people that have asthma fall into the categories that this would help, but I think I might be in the 10% that would have...a different kind of experience of asthma than the other 90%.
Patient 326: female, age 41: When it gave me the questions and gave me answers that they think I needed to look into, it basically said the same thing again.
A final small group of users (n = 2) perceived the feedback as being not scientific enough, by which they meant not having enough information about current asthma research.
Patient 355: male, age 30: I think it would have been good if it [the feedback] had said here is what asthma research is going.
Patient 305: female, age 26: For me more scientific information may have been useful...like if it [the feedback] gave links to publications for epidemiological studies or drug studies.
A majority of the users who expressed some reservations about the website nevertheless found some aspect of it to be helpful, either the feedback, the links to other sites, or simply the encouragement to approach their physician with questions.
Patients’ answers to interview questions regarding the individualized feedback and the impact of the website itself centered around two main themes. First, one common result of visiting the website and subsequently visiting a physician was a positive shift in patient attitudes regarding interactions with their physicians. Patients reported that they had more self-confidence, they talked more during the visit, and they had more confidence in the care they were receiving. A second, related theme focused on patients becoming more actively involved in their own asthma care. They gained a better understanding of their treatment options and of their role in managing the condition.
Theme 1: Positive Shift in Patient Attitudes Toward Interactions With Physician
A majority of patients (20/37, 55.6%) answered “yes” when asked a close-ended question about whether the website had influenced their physician visit in some way. In addition, many of those answering “no” or “unsure” to the same question nevertheless revealed in answers to subsequent open-ended questions that their visit had been positively affected. Common to many patients’ statements was an increase in self-confidence with regard to communicating with the physician because of the information and questions from the website.
Patient 308: female, age 49: I’ve been going to this doctor for about 17 years, [but this was] the first time that I’ve actually gotten anywhere with him as far as changing what he was doing for me.... [The website gave me answers to] a lot of the questions that I had in the back of my mind as to why my doctor wasn’t pursuing a different avenue. That was kind of cleared up for me, and [it] also gave me the questions to ask him that seemed to push him in the right direction as far as giving me something on a daily basis instead of the inhaler that I was becoming reliant on.
Patient 344: female, age 49: [My asking questions and having information] threw my doctor for a loop ‘cause it took him by surprise. [Laughs.] But it was a good thing. It was a real positive thing. It actually allowed us to create a stronger working relationship with controlling my asthma.
Use of the website also increased the amount of time patients talked during the physician visit. Some patients took the feedback printout with them and used it during their physician visit, while others read it before the visit to remind themselves of the content. Because patients were familiar with the suggested questions on the printout and felt secure about what they wanted to ask their physician, they felt more relaxed and interjected more; this, in turn, had a positive impact on the impression of their interaction with the physician, independent of the answers they received to the questions.
Patient 313: female, age 35: [You normally] have the questions that you want to ask, but you don’t write them down or if you’re really sick then you’re not even thinking about it. You’re just trying to get there. Your stress level’s pretty high. [With the printout], I was relaxed a little bit that I was already ready, and I didn’t have a lot of work to do. I can just grab the paper and go. It made it a little bit.... [pause] There was a little more discussion with my doctor about my asthma and a couple of triggers. We talked more.
Patient 340: female, age 42: If I hadn’t had that piece of paper [the feedback form] in my hand, I think I would have just gone as a regular office visit and just sat there and waited for her to make a decision, without contributing. [This time] I was able to speak about the fact that I probably should—or she probably should—look at other means of treatment, and that’s different than my usual office visit where I don’t make any suggestive contribution to what part of treatment is. I just take it all in.... [This time] I was part of the discussion, part of my treatment, and part of the whole total picture of getting my prescriptions changed.
Finally, because the website was able to give them or guide them to specific information about their condition, patients repeatedly mentioned feeling more confident in their understanding of issues related to their asthma and its treatment. This led to what they perceived as improvements in the physician-patient relationship and greater confidence in the care they were receiving. In some cases, the physician’s authority was validated by the patient’s own research, rather than the research being validated by the physician’s authority. This was in part due to the fact that the website and the links it provided gave more information than these participants felt they could glean from their short interactions with their physicians.
Patient 315: female, age 26: [The feedback form] gave me an opportunity to start off with some questions.... So I had some kind of say in what was going on. Because when I first went in, he just suggested medications for me and everything else, and I had no clue what the medications were, what they did, side effects, or anything like that. So, at least this way it gave me a little advantage because I knew from reading over the information before I went in kind of what the treatment options were.
Patient 313: female, age 35: [The information] helped a little bit, that I might actually be building this stronger relationship with my doctor by initiating conversation and questions for him.... I was able to talk to him and feel more confident in the treatment that I’m receiving.
Patient 304: female, age 47: [The website] listed six or so different [asthma] symptoms, and one of them I don’t have and I guess most people do, but I could see that it doesn’t have to only be this. So it makes me more confident that what my doctor told me is accurate.... [It] validates what the doctor told me.
As can be seen from the quotations above, use of the website promoted affirmative changes in patient attitudes toward their interactions with their physician. Not only did visit experiences improve from the patients’ perspectives, but some patients also indicated that their questions prompted changes in their treatment. In other words, asking specific questions was reported to overcome clinical inertia and result in positive modifications in patients’ care.
Theme 2: Patients Becoming More Actively Involved in Their Asthma Care
Participants varied in how they spoke of their knowledge about asthma and their understanding of their role in managing their asthma. A number of patients were generally more knowledgeable about their condition than others, and while some found the information on the website too limited in scope, others thought the website encouraged them to actively seek additional information, either online, in print sources, or from other individuals. Some patients had traditionally relied in part or, to a lesser extent, exclusively on their physicians for information about their treatment. For many of these patients, the information provided in the feedback and from the links to other sites led to an increased understanding of their condition and of how they could become more involved in their own care.
Patient 318: female, age 41: [The website feedback included] questions I never thought to ask. One of mine was about asking “Should I be taking steroid medication by mouth?”.... I had to do some research on what they considered steroid medications.... [That helped me] to think more about how to take steroids and myself and more questions to ask the doctor.
Patient 309: female, age 36: [After looking up information on an in-home peak flow meter:] I didn’t know that people had those at home at all. I didn’t know that that would be something I could do that would help monitor [my asthma]. That was the major thing. I didn’t really have a good idea of how sick I was.
For both well-educated and less-informed patients, having access to specific information about their condition frequently resulted in the decision to become more actively engaged in their care. What they learned through having used the website led to changes in how they wanted to approach their care. Patients became more aware of treatment opportunities and the need for changes in the frequency or style of their involvement in managing their condition.
Patient 326: female, age 41: I liked that it [the website] told me that maybe I should be taking more precautions and looking more into my [asthma], and maybe I’m not controlling it as well as I should, that maybe more attention should be brought to it each day instead of like once a week, twice a week.
Patient 344: female, age 49: [Asking questions from the feedback sheet] creates a relationship where you’re working together to create a plan, and it’s not just the doctor creating the plan.... I have more knowledge now to be able to go to him and have him work on me.
Patients’ responses illustrate increased involvement in their own care as a result of information and feedback attained either directly or indirectly through use of the website. In addition, as was evidenced in the first theme, having patients pursue new treatment alternatives and become more actively involved in their own care led to perceived positive changes in physician behaviors, including medication and monitoring adjustments.