Asthma is one of the most prevalent chronic conditions in the United Sates, yet despite the existence of national guidelines, nearly three fourths of patients with asthma do not have adequate control and clinical adherence to guidelines is low. While there are many reasons for this, physician inertia with respect to treatment change is partly to blame. Research suggests that patients who ask for specific tests and treatments are more likely to receive them.
This study investigated the impact and experience of using an interactive patient website designed to give patients individual feedback about their condition and to suggest tailored questions for patients to ask their physician. The website was designed to be used prior to a physician visit, to increase the likelihood that patients would receive recommended tests and treatments.
A total of 37 adult patients with asthma participated in semi-structured telephone interviews aimed at eliciting information about their experiences with the website. Transcripts were coded using qualitative data analysis techniques and software. Themes were developed from subsets of codes generated through the analysis. In addition, 26 physicians were surveyed regarding their impressions of the website.
Opportunities exist for improving website feedback, although the majority of both patient and physician respondents held favorable opinions about the site. Two major themes emerged regarding patients’ experiences with the website. First, many patients who used the website had a positive shift in their attitudes regarding interactions with their physicians. Second, use of the website prompted patients to become more actively involved in their asthma care. No patient reported any negative experiences as a result of using the website. Physicians rated the website positively.
Patients perceived that the interactive website intervention improved communication and interaction with their physicians, suggesting that patients can play a role in overcoming the clinical inertia of providers. Although the design and content of the website can be improved upon, the main findings suggest that use of the website is well accepted and is perceived to improve the quality of care that patients receive.
Asthma is one of the most common chronic conditions in the United States, yet it is estimated that approximately three fourths of patients with asthma do not have adequate control [
To test the impact of patients asking their health care providers about tests and treatments they could receive, we developed an interactive website (myexpertdoctor.com) to inform patients about asthma and to provide tailored feedback. The website is designed to be used before a physician visit to help patients know what questions to ask during the visit, which in turn may increase the chance that they receive tests and treatments suggested by evidence-based guidelines (see
Sample questions for physician and tailored feedback
Computer applications have been used to improve asthma control by improving patient education [
The overall design of the Web-based intervention, which included modules related to various medical conditions, including migraine and osteoarthritis, has been published elsewhere [
Website feedback and suggested question examples
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Since my asthma is worse than usual, would I benefit from taking a steroid medication by mouth? | |
Would I benefit from using an inhaler with a short-acting bronchodilator, such as albuterol? | |
Would I benefit from using a daily inhaled corticosteroid? | |
Would I benefit from using a long-acting bronchodilator like salmeterol? | |
Would I benefit from using a peak flow meter to monitor my asthma at home? | |
Would I benefit from seeing an asthma specialist at this time? | |
How frequently should I be using my controller medication(s)? |
The website feedback consisted of three elements: (1) a list of suggested questions for the patient to ask his or her physician, (2) a lay explanation of why the patient should ask the physician these questions (one message for those whose care was in keeping with the guideline [eg, moderate persistent asthma whose medication list included a corticosteroid inhaler] and one for those whose care was not), and (3) links to other websites for further reading and explanations of the suggested topics (sites selected and reviewed by panel of experts). By pointing out areas for potential improvements in care (“quality gaps”), we had a concern that some patients would believe that their provider was not giving them needed care. We expended efforts to make the feedback as neutral as possible with regard to this issue. For example, rather than indicating “you need…,” the feedback typically suggested “you may benefit from….” The rationale for the feedback was based on the Chronic Care Model, a theoretical model of chronic illness care in which one of the overarching goals is to foster productive interactions between patients, who actively participate in their care, and providers, who can draw on the expertise of guideline-based reminders [
The study was designed to document the experiences of patients who had used the asthma quality improvement website prior to a visit with their asthma care provider. Because qualitative methods are useful when conducting exploratory research [
In response to an advertisement on Google and letters mailed to asthma patients of a large health insurance company in Rhode Island, USA, potential subjects were encouraged to contact research staff and were screened over the phone for inclusion and exclusion criteria. The following inclusion criteria were used: (1) age greater than 21 years, (2) self-reported history of asthma, (3) a planned visit with an asthma care provider in the next 2 months, (4) Internet access at home or work, and (5) asthma care from a primary care provider rather than a specialist (eg, pulmonologist). During the screening phone call we asked patients the date of their next asthma provider visit and set a date for a follow-up phone interview after the visit. The final sample comprised 37 patients, who were mailed an informed consent form. The content of the form was explained over the phone, and subjects were encouraged to call the research team if they had any questions. All 37 subjects returned the consent form by mail before the date of their physician visit. Subjects were reimbursed US $100 for participation in the study.
For the physician sample, a nationally representative database of primary care providers was purchased from a marketing organization. A recruitment letter was mailed to a national random sample of 250 physicians; 26 physicians agreed to participate in the study and completed the anonymous survey on the study website. Physicians were reimbursed US $100 for participation in the study.
A research assistant monitored patients’ use of the website to be certain they used it before their physician visit. Emails were sent to every participant 7, 4, and 3 days before the date of the visit, reminding them to use the website. Two of the 37 subjects had not used the website within 72 hours of their planned asthma care provider visit and were called by the research assistant to remind them to use the website before their visit. Prior to the asthma care visit, all 37 subjects used the website, answering questions and receiving personalized feedback. The website and the research assistants encouraged patients to print the individualized feedback and take it with them to the physician visit. After visiting their physician, all patients were contacted and participated in a semi-structured telephone interview that lasted approximately 25 minutes. The interviews were conducted by one of two trained research assistants (DB, HL) using an interview guide created by the research team. Open-ended questions, through the use of follow-up questions and probes, allowed for in-depth exploration of topics such as those related to the individualized feedback provided by the website, how this feedback shaped (if at all) the participants’ interactions with their physicians, and whether and how the website and feedback were useful in helping them communicate with their physician [
Physician data were collected via a brief online survey posted on the study website. Physicians were asked to provide written answers to three close-ended and three open-ended questions regarding their impressions of the website, their perceptions of its usefulness to patients, and their suggestions for improvement.
Patient interviews were audiorecorded, transcribed, and entered into QSR NVivo qualitative software (version 2.0; QSR International; Melbourne, Australia) in order to facilitate data management and analysis. The transcripts were coded by a doctoral-level anthropologist based on the grounded theory technique, in which codes are drawn from the text and coding involves frequent comparative analysis of the data [
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 [
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.
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:
Provide info and precautions concerning specific medications.
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:
[Include] more patient education regarding control of triggering factors.
[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:
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.
[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.
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.”
[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.”
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.
I’ve done so much research already that most of what it was telling me, I already knew.
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.
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%.
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.
I think it would have been good if it [the feedback] had said here is what asthma research is going.
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.
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.
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.
[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.
[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.
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.
[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.
[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.
[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.
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 become more active in seeking 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.
[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.
[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.
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.
[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.
Inconsistencies in the implementation of and noncompliance with asthma treatment guidelines contribute to a reduction in health quality for individuals with the condition [
Our qualitative results validate the findings of many quantitative studies that have examined similar issues using survey data. Our previous research has shown that patients have a need for the information that is provided on the website. For example, in 2001, we asked 300 primary care patients if they had ever used or had any interest in using the Internet to “find out what questions you should ask your doctors when you see them” [
We hoped that by providing patients with a small number of evidence-based questions, they would have an enhanced patient-provider experience. A previous review of the effects of the Internet on doctor-patient communication identified some concern that physicians may be annoyed by patients bringing in information from the Internet, and that this may possibly harm the doctor-patient relationship [
We were pleased that subjects viewed the website as reinforcing the care they were receiving from their physician, rather than causing them to question it and potentially undermining their belief in their physician. Our findings are consistent with two other published studies of the website, which observed that the website feedback had no adverse impact on patient perceptions of overall quality of care from a physician [
Data in this exploratory study were collected from a convenience sample of individuals—the majority of the patient participants were white, female, and over age 35. Because of the sampling method, the results may not be generalizable to patients with asthma, the general patient population, or the physician population. In addition, patients were prompted several times to use the website before their provider visit, including phone calls, which would not occur if the website were implemented in a nonstudy setting. However, although research in the area of using websites to impact physician-patient interactions is new, previous research does support patients’ positive reactions to prompts designed to further physician-patient communication [
Because some of the patients’ physicians may have seen the printout from the website and some patients may have told their providers that they were participating in a study, a Hawthorne effect cannot be ruled out. Nevertheless, as the intention of the study was to have patients use the information from the website to prompt discussions with their physicians through the use of the feedback form, we judged the bias attributable to this effect to be limited. Although some providers may have known that their patients were study participants and therefore may have paid more attention to the patients’ questions, none of the data collected from the patients themselves indicated that this was the case.
Finally, although patients reported changes in the interactions with their physicians, these may not have translated into changes in patient care. Further research needs to be conducted on whether the website is successful in improving patient outcomes.
The Internet has great capacity to positively influence health care, and there is good evidence that it is already an entrenched part of the medical landscape. In the United States, 60% of adults have Internet access, and over 80% of patients with Internet access have searched for health information online [
Nevertheless, having patients ask the most pertinent questions relating to their care may help them get the most out of the normally brief office visit. Having patients access this type of information while in a doctor’s office has been shown to be too challenging [
While the website has clear implications for practice, it was not designed to be made available to patients in a physician’s office. Rather, it should be viewed instead as a prototype for possible distribution through a number of channels: (1) managed care organizations, to improve the quality of care they provide and satisfy accreditation requirements from the National Committee on Quality Assurance [
The present study has given us confidence that the current intervention has the potential to improve the way patients communicate with their provider and that the suggested questions can overcome the clinical inertia of providers. Both physician and patient users of the site provided useful feedback on changes that could be implemented in future versions of the website to make it more effective. The main findings—that use of the website and its feedback form positively influenced patients’ interactions with their physicians, their knowledge about asthma, and their feelings of responsibility for managing their condition—all point in the expected direction and suggest that the website can improve the quality of care patients receive. We believe that it is essential to give the Internet functionality beyond being a passive, albeit massive, repository of health information. A national study of 4764 adults who used the Internet for health information noted that only one in six believed that the Internet had influenced treatments that they used for a health condition [
However, empowering patients with specific questions to ask appears to put health information into patients’ hands in a way that activates them to be involved in their care. Despite the great number of medically oriented websites, we are not aware of another that provides patients with evidence-based questions to ask their doctor. Most interactive health websites focus instead on providing tailored risk assessment, such as the Heart to Heart Tool [
The research was funded via a National Heart Lung and Blood Institute Small Business Innovation Research Grant to Green Lights, Inc.
Dr. Sciamanna was a principal of Green Lights, Inc at the time of the research. Green Lights, Inc is no longer doing business.
Screenshots of the website