- Email: [email protected]
Insight From Patients for Radiologists: Improving Our Reporting Systems
Insight From Patients for Radiologists: Improving Our Reporting Systems Annette J. Johnson, MD, MSa, Doug Easterling, PhDb, Linda S. Williams, MDc,d, Sharon Glovere, Richard M. Frankel, PhDc
Purpose: The aim of this study was to seek patients’ perspectives on radiology reporting systems, so that reporting systems can begin to be reorganized and made more patient-centered by giving patients greater access to their personal health information. Methods: Focus group methodology was used to explore which aspects of radiology information are important to patients and to identify their preferred means of access to and format of this information. Subjects for the two groups were outpatients who had recently undergone MR imaging at a single academic medical center. Transcripts were analyzed using thematic content analysis. Results: Most subjects were dissatisfied with current reporting systems, citing delays and a lack of detail as the most important problems. Subjects varied with regard to preferences for who should relay results to them, with some expressing a desire for increased direct input from radiologists because they have greater expertise in imaging interpretation. Most subjects wanted results in writing and in detail, with attached lay language explanations, though a few subjects preferred less detail. Subjects were decidedly in favor of having the option to access results immediately via an online system, proposing some potential problems and potentially multiple benefits of such a system. Conclusions: Whatever system revisions are attempted to increase the patient-centeredness of care as regards to radiology reporting, patients will need to be able to choose their preferred levels of access and will need to have the option of accessing full details. Key Words: Patient-centered, radiology reporting, qualitative J Am Coll Radiol 2009;6:786-794. Copyright © 2009 American College of Radiology
INTRODUCTION One result of the complexity of modern health care delivery systems is that radiology results for a single patient are obtained by physicians from multiple sources (eg, different regional hospitals, local outpatient imaging a
Department of Radiology, Wake Forest University School of Medicine, Winston Salem, North Carolina. b Department of Social Sciences and Health Policy, Division of Public Health Sciences, Wake Forest University School of Medicine, Winston Salem, North Carolina. c Regenstrief Institute, Indiana University School of Medicine, Indianapolis, Indiana. d Richard L. Roudebush Veterans Affairs Medical Center, Indianapolis, Indiana. e Sharon Glover and Associates, Inc. Kernersville, North Carolina. Corresponding author and reprints: Annette J. Johnson, MD, MS, Wake Forest University School of Medicine, Department of Radiology, Medical Center Boulevard, Winston Salem, NC 27157; e-mail: anjohnso@wfubmc. edu.
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centers, remote medical centers) at various times. For primary physicians, the task of ensuring that results are promptly conveyed to patients and used for the most timely and appropriate care is challenging. The potential for important information to “fall through the cracks” is significant, and the consequences can affect the quality of care [1]. For patients, delayed or limited access to radiology test results subverts their efforts to be involved in effective patient-clinician partnerships for decision making [1-3]. Although the direct communication of imaging test results to patients has been attempted in mammography, direct reporting of test results has not been tried in most other areas of radiology. There is evidence that patients do not receive as much information as they want, specifically as regards to diagnosis, symptoms and spread of disease, prognosis, and treatment options related to a wide range of conditions, including multiple types of © 2009 American College of Radiology 0091-2182/09/$36.00 ● DOI 10.1016/j.jacr.2009.07.010
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cancer, angina, coronary artery disease, rheumatoid arthritis, psychiatric diseases, and pregnancy [4-11]. There is evidence that patients desire to be more involved in medical decision making and that such involvement positively affects patient outcomes [12-14]. The argument that increasing patient autonomy improves outcomes fits within the theoretical framework of Self-Determination Theory, which argues that people from all cultures share basic psychological needs for autonomy, competence, and relatedness and that when these 3 needs are supported by social contexts, well-being is enhanced [15]. Autonomy is described as concerning the extent to which one fully endorses one’s actions; such endorsement requires knowledge and understanding [15]. In health care, greater patient autonomy has been associated with greater adherence to medications [16], better maintenance of weight loss [17], improved glucose control among diabetics [18], and greater involvement in addiction treatment programs [19]. A system for the direct reporting of imaging test results to patients could be expected to increase their knowledge and understanding of their personal health, thus facilitating patient autonomy by providing the opportunity for patients to more fully endorse their actions. Given that increased patient autonomy in other areas of medicine has been associated with better health outcomes [15-19], efforts to incorporate a radiology reporting system that would support patient autonomy might also be expected to improve outcomes. The question of how to change processes to increase the patient-centeredness of care in radiology reporting has not been well explored. The different perspectives and preferences of clinicians and various patient populations regarding patient access to radiologic test results beyond mammography are not well understood. Patients’ perspectives and preferences must be incorporated into plans to reorganize care processes before such changes are implemented or effects on the quality of care are measured. This study was designed to help provide guidance as to how caregivers and managers might begin to redesign systems for reporting radiologic test results to advance the interests of patients by treating patients as customers and equal partners with their referring physicians in access to information. (A subsequent paper will discuss findings from physician focus groups [FGs] centered on the same topic.) The objectives of this pilot study were to understand what aspects of radiology information access are important to patients and to identify methods of information access that would be most acceptable to them and supportive of their autonomy. We sought to test 3 hypotheses: 1) patients want more timely and complete access to full radiologic test results; 2) patients perceive that the option for such increased access would be
associated with increased patient satisfaction and autonomy; and 3) the idea of optional immediate online access to results is acceptable to most patients. Because this was a pilot study of a question that has not been well investigated in the literature, we chose FGs as our method of investigation. METHODS Experimental Design We tested these hypotheses using qualitative FG methodology to identify which aspects of diagnostic radiology information are important to patients and to identify their preferred means of access to and format of this personal health information. Focus groups are small (recommended size of 5 to 10 participants), carefully planned discussions guided by an experienced facilitator to understand people’s experiences and opinions related to a given topic in a permissive and nonthreatening environment [20,21]. Unlike opinion survey questionnaires, which typically force responses on a 5-point or 7-point rating scale, FG discussions allow participants to qualify their answers or identify important contingencies associated with their responses. Individuals are encouraged to respond in their own words, using their own categorizations and perceived associations [22]. Focus groups also capitalize on group interaction and group communication to generate data. Both the open-response format and the group interactions (eg, allowing participants to react to and build on the responses of other participants) allow for richer data in respondents’ own words, revealing deeper levels of meaning and identifying subtle nuances in meaning and expression [22]. Using a thematic questioning guide, the facilitator flexibly leads participants through a series of open-ended questions [23]. We conducted two FGs of patients for the study: one with patients who had recently undergone MRI with normal results and the other with patients who had recently experienced abnormal MRI results. This stratification was based on the presumption that the content of patients’ radiology reports might reasonably affect how they would wish to be informed of the results, their feelings about future studies, and their perspectives on potential associated anxiety (related to the reports) and options for desired follow-up. We aimed to have equal numbers of men and women in each group and recruited to ensure racial and ethnic diversity among participants. We identified patients who had undergone MRI within the previous month using radiology and hospital information systems linked to medical records at our institution. All identified patients were mailed a letter inviting them to participate. At the time of the FG session, all participants completed an institutional review
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board-approved informed consent process, and the study was approved by our institutional review board and was compliant with HIPAA. Subjects To be eligible for the study, subjects were required to meet the following criteria: 1) age ⬎ 18 years, 2) had undergone MRI within the past month at our institution, 3) was able to communicate verbally in English, and 4) was willing to travel to the group site. Focus groups were stratified by MRI results (one group with normal results and one with abnormal results). We excluded patients with personal medical backgrounds (eg, nurses, medical technologists) because their levels of knowledge about medical tests and test results would likely not be representative of the general patient population. Focus Group Design Each FG met for 90 to 120 minutes in an off-campus institutional radiology facility. All FGs were audiotaped, and the tapes were professionally transcribed. Major topics around which the FG guide was designed included 3 key issues: 1) What aspects of radiology information and access are important to patients? 2) What methods of information access and formats of reports are most acceptable to patients? and 3) What potential problems or benefits might be associated with increasing patient access to radiology test results? Additional variables were collected for each FG participant by means of a short survey at the close of the sessions, including demographic data and information regarding familiarity and experience with the Internet. Data Collection and Analysis The major source of the FG data for the analysis was the verbatim transcription of the FG audiotapes. In addition, a designated note taker (the principal investigator) recorded behavioral (especially nonverbal) impressions and narrative themes of the discussion. A comparison of these notes with the audiotapes helped confirm emergent themes. We used content analysis techniques, primarily thematic content analysis, to organize the transcript data and to identify thematic domains. With thematic content analysis, we identified and organized the qualitative data into mutually exclusive domains by analyzing FG transcripts using systematic coding by content. With this technique, analysts read the transcript and identified discrete sections by major topic areas (eg, the importance of timeliness in patient notification of test results). These major sections were abstracted, and further, more detailed analysis proceeded within these thematic areas. From this first analysis, the coding categories were established (themes, domains within themes, and dimensions within domains) [22]. This type of analysis seeks to iden-
tify both consensus and variability within themes and domains. Once each theme was identified, we re-reviewed the transcripts to identify sample statements within the identified themes. These statements were used to illustrate the intended meaning of the domain and to identify important item-level content within the domains. RESULTS Of the 46 outpatients who were contacted by telephone and invited to participate, 13 agreed to participate, and 11 arrived for their scheduled FG session and participated in the session. Two FGs were conducted, one with 5 and the other with 6 participants. There were 9 women and 2 men, with a wide adult age range (see Figure 1). Subjects were diverse in terms of race and ethnicity, including 1 Hispanic subject, 5 black subjects, and 5 nonHispanic white subjects. There was also diversity in terms of socioeconomic status (see Figures 2A and 2B). Ten of the 11 subjects reported regular computer use, ranging from once every few weeks to several times per day. Six subjects reported never having used the Internet or email to communicate with their physicians or other health care providers, whereas 8 reported using the Internet with some regularity for seeking health care information. Self-reported health status was generally good or very good in these outpatients. We asked FG participants to discuss their experiences with current radiologic test result notification methods. These discussions uncovered a number of issues affecting what were predominantly negative to very negative experiences of individuals. Timing was the issue that participants mentioned most often. There was overwhelming agreement among participants that waiting to receive test result notification is very stressful. Frustration at waiting and the perception that this wait contributes to delays in care were also
Fig 1. Relative age distribution of focus group participants.
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Fig 2. (A) Self-reported household incomes of focus group participants. (B) Participants’ responses to the question “When you consider your household income from all sources today, would you say that you are comfortable, have just enough to make ends meet, or do not have enough to make ends meet?”
widely agreed on by participants. Most participants described delays in the range of days or weeks. There were two reports of very prompt (within hours) notification of test results on one hand and one report of never having received results (after 6 months) on the other. Most subjects reported receiving radiologic test results most often verbally, or occasionally in written form, in person from their regular physicians (ie, the ones who had ordered the radiologic tests). Occasional reports of notification by telephone were also mentioned, varying in acceptability among participants—as were reports of notification by mail, which was suggested as an unacceptable method by some. Representative quotations reflecting participants’ attitudes about current notification methods are provided in Table 1.
We asked FG participants to discuss their preferences regarding who should report radiologic test results to them and how much detail these results should include. These discussions revealed a number of issues and a good deal of variation in opinion among participants. About half thought that their regular doctors should ideally report test results to patients, whereas about half expressed the opinion that radiologists have more expertise regarding imaging and so should be providing more results information and explanation to patients. Most participants thought notification by radiologists would be a positive thing, provided that the referring physicians were also informed and that patients’ questions about treatment could be answered promptly by their treating physicians. Opinion was influenced by the issue of what the test results revealed. Some participants thought that clearly abnormal results (the example discussed was colon cancer) should be conveyed by radiologists immediately, whereas others preferred to have these types of results conveyed by their regular physicians. Regarding indeterminate results, the two FGs differed with respect to each other: most participants in the group with recent abnormal MRI results suggested that indeterminate results are very stressful and that they would prefer that these results be conveyed by their physicians, whereas most subjects in the group with recent normal MRI results did not express a preference for who should convey indeterminate results. Participants expressed a strong preference for reports being in lay language or with attached explanations in lay language. Most participants preferred greater detail in the reports, suggesting that having details would allow them to seek greater information about diseases or findings and to seek more effective social support. A few participants indicated a preference for immediate results of “normal” vs “not normal,” suggesting that greater detail would preferably come from their regular physicians. Some participants expressed interest in seeing images, not just written reports, suggesting that images could improve their understanding of the results. Representative quotations reflecting participants’ preferences about who reports results and in what detail are provided in Table 2. We also asked FG participants to discuss the idea of patients having immediate online access to radiologic test results and the potential benefits or problems with such an online system. These discussions uncovered several issues but especially helped distill relative priorities and offered insights about how a new system could respond to varying patient preferences and needs. Participants were decidedly in favor of having the option to access test results immediately via an
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Table 1. Attitudes toward current methods of radiologic test result notification Positive quotations “I had a doctor’s appointment the next day. And so when I saw the doctor, I said, ‘Pull up that MRI’ and he had the results. He had the results and he shared that with me at that point.” “I didn’t have time to worry. I went straight from the MRI to my doctor across the street. It was just 30 minutes and I knew.” Negative quotations “I only have one doctor that will send the test results in the mail. For the rest of my doctors, I have to wait until I go—then you don’t know nothing until you go and that might be two weeks or whatever.” “I think the waiting and not knowing anything is the worst.” “I still don’t know what my results are. Evidently, it wasn’t anything they found, because I haven’t heard anything.” “My expectation was that I would leave there with some understanding at least. And it was very disappointing, very disheartening to be told ‘Oh, we don’t give results.’” “About a month later, it was like your yearly appointment with your doctor. And while I was there he said, ‘Do you have anything else you’re concerned about?’ And I said, ‘Well, I’d really like to see that picture.’” “I think I was very naïve. I thought that I would come out of that tube, there was what looked like a little television screen there, and I thought that they were going to wheel me right over there and say, ‘See, see—that right there. We found what’s causing your problem—it’s right there.’” “It’s two weeks before you see your doctor, but you’ve already built it in your mind and it’s already created—worries and stress for yourself.” “I figured if it was life-threatening or something, somebody would have called me by now. . . . So I’m just figuring that no news is good news.” “A lot of doctors get caught up in other patients, and they can’t get you right in. So sometimes, you have to wait.”
online system. Responding to open-ended questions about this option, they offered the following potential benefits: 1) such a system would allow them to better prepare for their next physician visits, especially to make the most efficient use of limited time with their physicians; 2) such a system would facilitate their educating themselves about their diseases or conditions; 3) it would empower them and give them more of a “partner”-type relationship with their regular doctors for decision making; 4) it would likely decrease the delay in taking the next steps in their care; and 5) it would facilitate their success in seeking social support. Most participants indicated concern about delays in having their questions answered and wanted their regular physicians’ input promptly. It was clear that relationships between participants and their physicians vary greatly, particularly in the degree of patient trust that complete test results are reliably and promptly relayed by their physicians. They were split with regard to the acceptability of receiving bad news by online report, with some preferring to receive these types of results with much detail by the online route and some indicating that they would prefer to hear such information from their physicians. Representative quotations on the concept of immediate online access are provided in Table 3.
DISCUSSION AND CONCLUSIONS In our racially and socioeconomically diverse small groups, we found agreement on several key issues and striking variability on other issues. Most participants were dissatisfied with current systems of notification of radiologic test results, with delays and a lack of details being the most emphasized problems. Focus group participants overwhelmingly agreed that delays in receiving radiologic test results are significant stressors for patients. Participants were fairly evenly split with regard to whom they would prefer to provide test results to them, with some wanting greater input from radiologists in particular. Most would want written reports to include much detail, with associated lay explanations of terms, but a minority preferred that written reports include minimal detail and that their physicians provide them with further details in person. All participants wanted their physicians’ prompt input in putting results into the patient’s context and in advising next steps in management. The FGs indicated that patients strongly favored a system for optional online access to results, but some thought that telephone reporting would also be acceptable. They proposed several major advantages that they
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Table 2. Preferences for who should provide results and in how much detail Quotations about amount of detail “Well, one thing that irks me . . . when you ask about your test results and they say, ‘Oh, everything was fine.’ But that’s not clear to me. I mean, was my spine fine? . . . Was my leg? I mean, you know . . . give me more details.” “I wouldn’t want just that scan or just the piece of paper saying this is what we found. I’d want all the details—what you found, how you found it, what we’re going to do about it. I’d probably want too much information right away.” “I would want to see it eventually, with some help in understanding.” “I want all of the information I can get, and I want it as soon as I can get it—which would be to go get it online.” “If there is something bad that you have to tell me, you better have me in your office with some smelling salts.” Quotations about who provides results “It doesn’t have to be my physician. I think ideally if a radiologist could be on staff right after you’ve had your MRI and take you into a consultation room and say, ‘This is what we see. You are going to need to discuss it with your doctor, but I can tell you now, this is what we see.’ And then you have some information from an official, you know, someone who is knowledgeable of reading it.” “In my experience, I asked two physicians, neither of them could tell. They said they were not radiologists. . . . So, um, I don’t think that my primary care physician or other person that treated me want to become radiologists, so probably it’s going to have to be the radiologist that would change and do something different.” “My doctor said, ‘I am not a radiologist and I can not tell you anything about what you are looking at, but here’s the picture so you can see it.’” “I rely on my doctor. The results go to him, and I rely on him to tell me.” “The discussion process with me would be with my doctor, not a radiologist, because I really don’t think it would be fair to ask the radiologist a lot of questions they would not be equipped to answer.” “I feel different from these two—because they have a lot of confidence in their doctors. I don’t have that.” “I would be fine with hearing it from somebody else, so long as I know my primary doctor is getting the information.” “The phone would be fine with me. But don’t send it in the mail—because my neighbor will get it. Or when I do get it, it’s soaking wet and I can’t read it anyway . . . The mail is not reliable.”
perceived would be associated with immediate online access to results: 1) better preparation for their next physician visits, 2) the facilitation of self-education, 3) empowerment in their patient-physician partnerships, 4) minimization of delays in care, and 5) facilitation of social support-seeking efforts. Participants were split with regard to potential problems with immediate online results, with some preferring not to receive “bad” results using this option. Several conclusions can be drawn from these data. It seems clear that many, if not most, of the patients we spoke with wanted a change in the way they receive radiologic test results. Many wanted results to be more timely, with much more detail, in written format. Some specifically desired greater input from radiologists, perceiving that this is expertise they are not fully benefiting from at present. It seems clear that whatever system revisions are attempted to increase the patient-centeredness of care as regards to radiology reporting, there will need to be much flexibility in the reporting process, especially
in that individual patients will need to be able to choose their preferred levels of access. Although we only scratched the surface of the small area of radiology reporting, our findings among patient participants—including the prominent desire for more personal health-related information as well as the wide variation in opinions on trust and control issues in health care—seem to fit with Self-Determination Theory, which views autonomy as a key to understanding the quality of behavior regulation. Autonomy is seen as relating to acts that are endorsed by the self (ie, self-determined) because of the utility or importance of the acts for one’s personal goals, including acts reflecting wholehearted consent to external inputs or inducements [24,25]. Such actions are said to be truly autonomous to the extent that the motives are endorsed at a higher level of reflection by the self, so that not only external coercion but also inner conflict or active avoidance of reflection serve to make acts not autonomous [25]. More autonomous actions have
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Table 3. What about immediate online access to results for patients? Quotations about potential problems “You have something saying that you found something inside my stomach, but now you’ve got to wait two weeks before going to see the doctor. I’m going to be tearing that doctor’s phone up—somebody is going to have to tell me something.” “Most people want to get answers to their questions, especially if it’s something really, really serious.” “Even if it’s not detailed, it needs to be expressed in the same fashion the doctor would talk to me if I went in there. Because otherwise it’s pointless.” “As long as it’s good news, I’m with it.” “There are a lot of medical terms and bones and stuff around it, and I have no idea what they’re saying.” Quotations about potential benefits “I’ll take whatever is given to me, and I’ll do my research so that I’m prepared when I walk in that doctor’s office.” “You can at least get your questions together for when you are going to get an answer. Then I would use that information to go on the internet and look or search or talk to various people.” “I will try to use that to educate myself.” “It’s very good if it can be on the computer because I can look at it. My daughter, she wants to be a doctor too, and then she can explain to me more about the test. . . . But I think maybe they should have a little advice, because some people, they are scared.” “I do searches all the time and especially the National Institutes of Health Web site. It’s a super place to get information, really great to get information about drugs or medical conditions. I love it.” “I tell you what—if you have to sit there in the doctor’s office and you get really bad news out of the blue, you are stunned. You can’t think, and then you walk away. And the next day you’re thinking, why didn’t I ask this. So I think if I found out soon, I could be better prepared for the visit, my doctor’s visit.” “Being able to see what they’re doing, almost like being on the same page as the doctor—we are kind of like equals because we are both actually looking at something we both understand.” “For me it would give me a sense of control, then I could be a better advocate for myself. I don’t expect the doctor to cure me. He’s gonna help me in the process, but there are things that if I have a better understanding, I can do better for myself.” “I would like to have direct access cause I could study more and then I could really find out what’s going on. I know they know. But I would study it till I really figure out what it is. I mean, I could deal with it direct.” “One of the other things that we all tend to do is . . . I have this test and I tell my friend, and she has already had this test. It’s some comfort to find some other people, family that can get you used to the idea.” “If you get this information early instead of having to wait to go back to your PCP for them to do a referral, you could either go ahead and call ahead and say, ‘This is what it said,’ and ‘Get me an appointment,’ if you have to have a referral from your PCP, or you yourself can go ahead and call the specialist because a specialist is much more difficult to get an appointment with.” Note: PCP ⫽ primary care physician.
been associated with greater well-being and better health outcomes in multiple clinical settings, mostly involving chronic diseases [15-19]. On the basis of our findings, we suggest that perhaps radiologists could also facilitate patient autonomy in a limited but potentially meaningful way. Autonomy for any given action is a matter of degree, and people can be distinguished by individual differences in their tendencies toward autonomous functioning across specific behaviors. Those who function on the autonomous end of the spectrum tend to organize their behavior regula-
tion by reflecting on possibilities and choices, whereas those on the control end of the spectrum tend to regulate behavior by focusing on perceived rewards and punishments [25]. Such variation was quite apparent among our study participants, even with our small numbers, leading us to think that issues of patient autonomy might be quite relevant and applicable to our question of radiology reporting. Making allowances for such widely varying preferences and modes of internal behavior regulation will be a key challenge in redesigning systems to make health care informa-
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tion available to patients in a more patient-centered manner. Autonomous function should be facilitated because it has been shown to lead to better outcomes, but individual patient choice for desired level of information access must be respected. Providers should facilitate making this choice process easy for patients by creating straightforward reporting systems that are optionally accessed by patients and allow for varying levels of access per patient preference. There were several limitations of this qualitative study. First, and implicit in FG methodology, is the issue of generalizability to a larger population. Focus groups are not designed for such generalizability. Although our FGs were within the recommended size, our study included a very small number of participants at a single site, with recruitment rate that was low (27%) but not atypical for studies of this type. Within these constraints, we achieved reasonable diversity among participants in terms of race and ethnicity, age, and socioeconomic status. Another concern with this type of research is the lack of “hard” data obtained, also a common issue with all FG research [22]. On the other hand, the rich data we obtained in patients’ own words seem appropriate and advantageous in our setting because we sought information at an early exploratory stage, seeking patients’ impressions of a provider service and evaluating a topic about which little is understood. The data obtained by FG methodology are especially useful in these situations, facilitating the generation of hypotheses for future quantitative research efforts. Other limitations that relate to FG methodology include that the facilitator, for purposes of maintaining the group’s discussion on the chosen topic, may significantly influence the group’s interactions, or that the presence of the group itself may affect what individuals say or do not say [21]. We sought to minimize these effects by choosing an experienced facilitator who created a high level of comfort in a nonthreatening atmosphere in which all ideas were welcome while maintaining control of the group to ensure that it was not dominated by any one member. Finally, study participants may have been different from those who chose not to participate, especially as regards greater interest in receiving radiologic results and more interest in increasing their health-related autonomy. Within its limitations, this study offers important insights about patients’ perspectives on how they are informed about personal health information related to radiologic test results. We as radiologists are concerned about patients’ opinions and satisfaction, and we are especially concerned about increasing the patient-centeredness of care in the area of radiology reporting to improve outcomes. The direct patient data from this
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794 Journal of the American College of Radiology/ Vol. 6 No. 11 November 2009 18. Williams GC, Freedman ZR, Deci EL. Supporting autonomy to motivate glucose control in patients with diabetes. Diabetes Care 1998; 21:1644-51. 19. Ryan RM, Plant RW, O’Malley S. Initial motivations for alcohol treatment: Relations with patient characteristics, treatment involvement and dropout. Addict Behav 1995;20:279-97. 20. Krueger RA, Casey MA. Overview of focus groups. In: Focus groups: a practical guide for applied research. 3rd ed. Thousand Oaks, Calif: Sage; 2000:3-19. 21. Morgan DL. Focus groups as a qualitative method. In: Focus groups as qualitative research. 2nd ed. Thousand Oaks, Calif: Sage; 1997:7-17.
22. Stewart DW, Shamdasani PN. Introduction. In: Focus groups: theory and practice. Newbury Park, Calif: Sage; 1990:9-32. 23. Angel R, Cleary PD. The effects of social structure and culture on reported health. Soc Sci Quart 1984;65:814-28. 24. Deci EL, Eghrari H, Patrick BC, Leone DR. Facilitating internalization: the self-determination theory perspective. J Pers 1994;62: 119-42. 25. Ryan RM, Deci EL. Self-regulation and the problem of human autonomy: does psychology need choice, self-determination, and will? J Pers 2006;74:1557-85.
Purpose: The aim of this study was to seek patients’ perspectives on radiology reporting systems, so that reporting systems can begin to be reorganized and made more patient-centered by giving patients greater access to their personal health information. Methods: Focus group methodology was used to explore which aspects of radiology information are important to patients and to identify their preferred means of access to and format of this information. Subjects for the two groups were outpatients who had recently undergone MR imaging at a single academic medical center. Transcripts were analyzed using thematic content analysis. Results: Most subjects were dissatisfied with current reporting systems, citing delays and a lack of detail as the most important problems. Subjects varied with regard to preferences for who should relay results to them, with some expressing a desire for increased direct input from radiologists because they have greater expertise in imaging interpretation. Most subjects wanted results in writing and in detail, with attached lay language explanations, though a few subjects preferred less detail. Subjects were decidedly in favor of having the option to access results immediately via an online system, proposing some potential problems and potentially multiple benefits of such a system. Conclusions: Whatever system revisions are attempted to increase the patient-centeredness of care as regards to radiology reporting, patients will need to be able to choose their preferred levels of access and will need to have the option of accessing full details. Key Words: Patient-centered, radiology reporting, qualitative J Am Coll Radiol 2009;6:786-794. Copyright © 2009 American College of Radiology
INTRODUCTION One result of the complexity of modern health care delivery systems is that radiology results for a single patient are obtained by physicians from multiple sources (eg, different regional hospitals, local outpatient imaging a
Department of Radiology, Wake Forest University School of Medicine, Winston Salem, North Carolina. b Department of Social Sciences and Health Policy, Division of Public Health Sciences, Wake Forest University School of Medicine, Winston Salem, North Carolina. c Regenstrief Institute, Indiana University School of Medicine, Indianapolis, Indiana. d Richard L. Roudebush Veterans Affairs Medical Center, Indianapolis, Indiana. e Sharon Glover and Associates, Inc. Kernersville, North Carolina. Corresponding author and reprints: Annette J. Johnson, MD, MS, Wake Forest University School of Medicine, Department of Radiology, Medical Center Boulevard, Winston Salem, NC 27157; e-mail: anjohnso@wfubmc. edu.
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centers, remote medical centers) at various times. For primary physicians, the task of ensuring that results are promptly conveyed to patients and used for the most timely and appropriate care is challenging. The potential for important information to “fall through the cracks” is significant, and the consequences can affect the quality of care [1]. For patients, delayed or limited access to radiology test results subverts their efforts to be involved in effective patient-clinician partnerships for decision making [1-3]. Although the direct communication of imaging test results to patients has been attempted in mammography, direct reporting of test results has not been tried in most other areas of radiology. There is evidence that patients do not receive as much information as they want, specifically as regards to diagnosis, symptoms and spread of disease, prognosis, and treatment options related to a wide range of conditions, including multiple types of © 2009 American College of Radiology 0091-2182/09/$36.00 ● DOI 10.1016/j.jacr.2009.07.010
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cancer, angina, coronary artery disease, rheumatoid arthritis, psychiatric diseases, and pregnancy [4-11]. There is evidence that patients desire to be more involved in medical decision making and that such involvement positively affects patient outcomes [12-14]. The argument that increasing patient autonomy improves outcomes fits within the theoretical framework of Self-Determination Theory, which argues that people from all cultures share basic psychological needs for autonomy, competence, and relatedness and that when these 3 needs are supported by social contexts, well-being is enhanced [15]. Autonomy is described as concerning the extent to which one fully endorses one’s actions; such endorsement requires knowledge and understanding [15]. In health care, greater patient autonomy has been associated with greater adherence to medications [16], better maintenance of weight loss [17], improved glucose control among diabetics [18], and greater involvement in addiction treatment programs [19]. A system for the direct reporting of imaging test results to patients could be expected to increase their knowledge and understanding of their personal health, thus facilitating patient autonomy by providing the opportunity for patients to more fully endorse their actions. Given that increased patient autonomy in other areas of medicine has been associated with better health outcomes [15-19], efforts to incorporate a radiology reporting system that would support patient autonomy might also be expected to improve outcomes. The question of how to change processes to increase the patient-centeredness of care in radiology reporting has not been well explored. The different perspectives and preferences of clinicians and various patient populations regarding patient access to radiologic test results beyond mammography are not well understood. Patients’ perspectives and preferences must be incorporated into plans to reorganize care processes before such changes are implemented or effects on the quality of care are measured. This study was designed to help provide guidance as to how caregivers and managers might begin to redesign systems for reporting radiologic test results to advance the interests of patients by treating patients as customers and equal partners with their referring physicians in access to information. (A subsequent paper will discuss findings from physician focus groups [FGs] centered on the same topic.) The objectives of this pilot study were to understand what aspects of radiology information access are important to patients and to identify methods of information access that would be most acceptable to them and supportive of their autonomy. We sought to test 3 hypotheses: 1) patients want more timely and complete access to full radiologic test results; 2) patients perceive that the option for such increased access would be
associated with increased patient satisfaction and autonomy; and 3) the idea of optional immediate online access to results is acceptable to most patients. Because this was a pilot study of a question that has not been well investigated in the literature, we chose FGs as our method of investigation. METHODS Experimental Design We tested these hypotheses using qualitative FG methodology to identify which aspects of diagnostic radiology information are important to patients and to identify their preferred means of access to and format of this personal health information. Focus groups are small (recommended size of 5 to 10 participants), carefully planned discussions guided by an experienced facilitator to understand people’s experiences and opinions related to a given topic in a permissive and nonthreatening environment [20,21]. Unlike opinion survey questionnaires, which typically force responses on a 5-point or 7-point rating scale, FG discussions allow participants to qualify their answers or identify important contingencies associated with their responses. Individuals are encouraged to respond in their own words, using their own categorizations and perceived associations [22]. Focus groups also capitalize on group interaction and group communication to generate data. Both the open-response format and the group interactions (eg, allowing participants to react to and build on the responses of other participants) allow for richer data in respondents’ own words, revealing deeper levels of meaning and identifying subtle nuances in meaning and expression [22]. Using a thematic questioning guide, the facilitator flexibly leads participants through a series of open-ended questions [23]. We conducted two FGs of patients for the study: one with patients who had recently undergone MRI with normal results and the other with patients who had recently experienced abnormal MRI results. This stratification was based on the presumption that the content of patients’ radiology reports might reasonably affect how they would wish to be informed of the results, their feelings about future studies, and their perspectives on potential associated anxiety (related to the reports) and options for desired follow-up. We aimed to have equal numbers of men and women in each group and recruited to ensure racial and ethnic diversity among participants. We identified patients who had undergone MRI within the previous month using radiology and hospital information systems linked to medical records at our institution. All identified patients were mailed a letter inviting them to participate. At the time of the FG session, all participants completed an institutional review
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board-approved informed consent process, and the study was approved by our institutional review board and was compliant with HIPAA. Subjects To be eligible for the study, subjects were required to meet the following criteria: 1) age ⬎ 18 years, 2) had undergone MRI within the past month at our institution, 3) was able to communicate verbally in English, and 4) was willing to travel to the group site. Focus groups were stratified by MRI results (one group with normal results and one with abnormal results). We excluded patients with personal medical backgrounds (eg, nurses, medical technologists) because their levels of knowledge about medical tests and test results would likely not be representative of the general patient population. Focus Group Design Each FG met for 90 to 120 minutes in an off-campus institutional radiology facility. All FGs were audiotaped, and the tapes were professionally transcribed. Major topics around which the FG guide was designed included 3 key issues: 1) What aspects of radiology information and access are important to patients? 2) What methods of information access and formats of reports are most acceptable to patients? and 3) What potential problems or benefits might be associated with increasing patient access to radiology test results? Additional variables were collected for each FG participant by means of a short survey at the close of the sessions, including demographic data and information regarding familiarity and experience with the Internet. Data Collection and Analysis The major source of the FG data for the analysis was the verbatim transcription of the FG audiotapes. In addition, a designated note taker (the principal investigator) recorded behavioral (especially nonverbal) impressions and narrative themes of the discussion. A comparison of these notes with the audiotapes helped confirm emergent themes. We used content analysis techniques, primarily thematic content analysis, to organize the transcript data and to identify thematic domains. With thematic content analysis, we identified and organized the qualitative data into mutually exclusive domains by analyzing FG transcripts using systematic coding by content. With this technique, analysts read the transcript and identified discrete sections by major topic areas (eg, the importance of timeliness in patient notification of test results). These major sections were abstracted, and further, more detailed analysis proceeded within these thematic areas. From this first analysis, the coding categories were established (themes, domains within themes, and dimensions within domains) [22]. This type of analysis seeks to iden-
tify both consensus and variability within themes and domains. Once each theme was identified, we re-reviewed the transcripts to identify sample statements within the identified themes. These statements were used to illustrate the intended meaning of the domain and to identify important item-level content within the domains. RESULTS Of the 46 outpatients who were contacted by telephone and invited to participate, 13 agreed to participate, and 11 arrived for their scheduled FG session and participated in the session. Two FGs were conducted, one with 5 and the other with 6 participants. There were 9 women and 2 men, with a wide adult age range (see Figure 1). Subjects were diverse in terms of race and ethnicity, including 1 Hispanic subject, 5 black subjects, and 5 nonHispanic white subjects. There was also diversity in terms of socioeconomic status (see Figures 2A and 2B). Ten of the 11 subjects reported regular computer use, ranging from once every few weeks to several times per day. Six subjects reported never having used the Internet or email to communicate with their physicians or other health care providers, whereas 8 reported using the Internet with some regularity for seeking health care information. Self-reported health status was generally good or very good in these outpatients. We asked FG participants to discuss their experiences with current radiologic test result notification methods. These discussions uncovered a number of issues affecting what were predominantly negative to very negative experiences of individuals. Timing was the issue that participants mentioned most often. There was overwhelming agreement among participants that waiting to receive test result notification is very stressful. Frustration at waiting and the perception that this wait contributes to delays in care were also
Fig 1. Relative age distribution of focus group participants.
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Fig 2. (A) Self-reported household incomes of focus group participants. (B) Participants’ responses to the question “When you consider your household income from all sources today, would you say that you are comfortable, have just enough to make ends meet, or do not have enough to make ends meet?”
widely agreed on by participants. Most participants described delays in the range of days or weeks. There were two reports of very prompt (within hours) notification of test results on one hand and one report of never having received results (after 6 months) on the other. Most subjects reported receiving radiologic test results most often verbally, or occasionally in written form, in person from their regular physicians (ie, the ones who had ordered the radiologic tests). Occasional reports of notification by telephone were also mentioned, varying in acceptability among participants—as were reports of notification by mail, which was suggested as an unacceptable method by some. Representative quotations reflecting participants’ attitudes about current notification methods are provided in Table 1.
We asked FG participants to discuss their preferences regarding who should report radiologic test results to them and how much detail these results should include. These discussions revealed a number of issues and a good deal of variation in opinion among participants. About half thought that their regular doctors should ideally report test results to patients, whereas about half expressed the opinion that radiologists have more expertise regarding imaging and so should be providing more results information and explanation to patients. Most participants thought notification by radiologists would be a positive thing, provided that the referring physicians were also informed and that patients’ questions about treatment could be answered promptly by their treating physicians. Opinion was influenced by the issue of what the test results revealed. Some participants thought that clearly abnormal results (the example discussed was colon cancer) should be conveyed by radiologists immediately, whereas others preferred to have these types of results conveyed by their regular physicians. Regarding indeterminate results, the two FGs differed with respect to each other: most participants in the group with recent abnormal MRI results suggested that indeterminate results are very stressful and that they would prefer that these results be conveyed by their physicians, whereas most subjects in the group with recent normal MRI results did not express a preference for who should convey indeterminate results. Participants expressed a strong preference for reports being in lay language or with attached explanations in lay language. Most participants preferred greater detail in the reports, suggesting that having details would allow them to seek greater information about diseases or findings and to seek more effective social support. A few participants indicated a preference for immediate results of “normal” vs “not normal,” suggesting that greater detail would preferably come from their regular physicians. Some participants expressed interest in seeing images, not just written reports, suggesting that images could improve their understanding of the results. Representative quotations reflecting participants’ preferences about who reports results and in what detail are provided in Table 2. We also asked FG participants to discuss the idea of patients having immediate online access to radiologic test results and the potential benefits or problems with such an online system. These discussions uncovered several issues but especially helped distill relative priorities and offered insights about how a new system could respond to varying patient preferences and needs. Participants were decidedly in favor of having the option to access test results immediately via an
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Table 1. Attitudes toward current methods of radiologic test result notification Positive quotations “I had a doctor’s appointment the next day. And so when I saw the doctor, I said, ‘Pull up that MRI’ and he had the results. He had the results and he shared that with me at that point.” “I didn’t have time to worry. I went straight from the MRI to my doctor across the street. It was just 30 minutes and I knew.” Negative quotations “I only have one doctor that will send the test results in the mail. For the rest of my doctors, I have to wait until I go—then you don’t know nothing until you go and that might be two weeks or whatever.” “I think the waiting and not knowing anything is the worst.” “I still don’t know what my results are. Evidently, it wasn’t anything they found, because I haven’t heard anything.” “My expectation was that I would leave there with some understanding at least. And it was very disappointing, very disheartening to be told ‘Oh, we don’t give results.’” “About a month later, it was like your yearly appointment with your doctor. And while I was there he said, ‘Do you have anything else you’re concerned about?’ And I said, ‘Well, I’d really like to see that picture.’” “I think I was very naïve. I thought that I would come out of that tube, there was what looked like a little television screen there, and I thought that they were going to wheel me right over there and say, ‘See, see—that right there. We found what’s causing your problem—it’s right there.’” “It’s two weeks before you see your doctor, but you’ve already built it in your mind and it’s already created—worries and stress for yourself.” “I figured if it was life-threatening or something, somebody would have called me by now. . . . So I’m just figuring that no news is good news.” “A lot of doctors get caught up in other patients, and they can’t get you right in. So sometimes, you have to wait.”
online system. Responding to open-ended questions about this option, they offered the following potential benefits: 1) such a system would allow them to better prepare for their next physician visits, especially to make the most efficient use of limited time with their physicians; 2) such a system would facilitate their educating themselves about their diseases or conditions; 3) it would empower them and give them more of a “partner”-type relationship with their regular doctors for decision making; 4) it would likely decrease the delay in taking the next steps in their care; and 5) it would facilitate their success in seeking social support. Most participants indicated concern about delays in having their questions answered and wanted their regular physicians’ input promptly. It was clear that relationships between participants and their physicians vary greatly, particularly in the degree of patient trust that complete test results are reliably and promptly relayed by their physicians. They were split with regard to the acceptability of receiving bad news by online report, with some preferring to receive these types of results with much detail by the online route and some indicating that they would prefer to hear such information from their physicians. Representative quotations on the concept of immediate online access are provided in Table 3.
DISCUSSION AND CONCLUSIONS In our racially and socioeconomically diverse small groups, we found agreement on several key issues and striking variability on other issues. Most participants were dissatisfied with current systems of notification of radiologic test results, with delays and a lack of details being the most emphasized problems. Focus group participants overwhelmingly agreed that delays in receiving radiologic test results are significant stressors for patients. Participants were fairly evenly split with regard to whom they would prefer to provide test results to them, with some wanting greater input from radiologists in particular. Most would want written reports to include much detail, with associated lay explanations of terms, but a minority preferred that written reports include minimal detail and that their physicians provide them with further details in person. All participants wanted their physicians’ prompt input in putting results into the patient’s context and in advising next steps in management. The FGs indicated that patients strongly favored a system for optional online access to results, but some thought that telephone reporting would also be acceptable. They proposed several major advantages that they
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Table 2. Preferences for who should provide results and in how much detail Quotations about amount of detail “Well, one thing that irks me . . . when you ask about your test results and they say, ‘Oh, everything was fine.’ But that’s not clear to me. I mean, was my spine fine? . . . Was my leg? I mean, you know . . . give me more details.” “I wouldn’t want just that scan or just the piece of paper saying this is what we found. I’d want all the details—what you found, how you found it, what we’re going to do about it. I’d probably want too much information right away.” “I would want to see it eventually, with some help in understanding.” “I want all of the information I can get, and I want it as soon as I can get it—which would be to go get it online.” “If there is something bad that you have to tell me, you better have me in your office with some smelling salts.” Quotations about who provides results “It doesn’t have to be my physician. I think ideally if a radiologist could be on staff right after you’ve had your MRI and take you into a consultation room and say, ‘This is what we see. You are going to need to discuss it with your doctor, but I can tell you now, this is what we see.’ And then you have some information from an official, you know, someone who is knowledgeable of reading it.” “In my experience, I asked two physicians, neither of them could tell. They said they were not radiologists. . . . So, um, I don’t think that my primary care physician or other person that treated me want to become radiologists, so probably it’s going to have to be the radiologist that would change and do something different.” “My doctor said, ‘I am not a radiologist and I can not tell you anything about what you are looking at, but here’s the picture so you can see it.’” “I rely on my doctor. The results go to him, and I rely on him to tell me.” “The discussion process with me would be with my doctor, not a radiologist, because I really don’t think it would be fair to ask the radiologist a lot of questions they would not be equipped to answer.” “I feel different from these two—because they have a lot of confidence in their doctors. I don’t have that.” “I would be fine with hearing it from somebody else, so long as I know my primary doctor is getting the information.” “The phone would be fine with me. But don’t send it in the mail—because my neighbor will get it. Or when I do get it, it’s soaking wet and I can’t read it anyway . . . The mail is not reliable.”
perceived would be associated with immediate online access to results: 1) better preparation for their next physician visits, 2) the facilitation of self-education, 3) empowerment in their patient-physician partnerships, 4) minimization of delays in care, and 5) facilitation of social support-seeking efforts. Participants were split with regard to potential problems with immediate online results, with some preferring not to receive “bad” results using this option. Several conclusions can be drawn from these data. It seems clear that many, if not most, of the patients we spoke with wanted a change in the way they receive radiologic test results. Many wanted results to be more timely, with much more detail, in written format. Some specifically desired greater input from radiologists, perceiving that this is expertise they are not fully benefiting from at present. It seems clear that whatever system revisions are attempted to increase the patient-centeredness of care as regards to radiology reporting, there will need to be much flexibility in the reporting process, especially
in that individual patients will need to be able to choose their preferred levels of access. Although we only scratched the surface of the small area of radiology reporting, our findings among patient participants—including the prominent desire for more personal health-related information as well as the wide variation in opinions on trust and control issues in health care—seem to fit with Self-Determination Theory, which views autonomy as a key to understanding the quality of behavior regulation. Autonomy is seen as relating to acts that are endorsed by the self (ie, self-determined) because of the utility or importance of the acts for one’s personal goals, including acts reflecting wholehearted consent to external inputs or inducements [24,25]. Such actions are said to be truly autonomous to the extent that the motives are endorsed at a higher level of reflection by the self, so that not only external coercion but also inner conflict or active avoidance of reflection serve to make acts not autonomous [25]. More autonomous actions have
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Table 3. What about immediate online access to results for patients? Quotations about potential problems “You have something saying that you found something inside my stomach, but now you’ve got to wait two weeks before going to see the doctor. I’m going to be tearing that doctor’s phone up—somebody is going to have to tell me something.” “Most people want to get answers to their questions, especially if it’s something really, really serious.” “Even if it’s not detailed, it needs to be expressed in the same fashion the doctor would talk to me if I went in there. Because otherwise it’s pointless.” “As long as it’s good news, I’m with it.” “There are a lot of medical terms and bones and stuff around it, and I have no idea what they’re saying.” Quotations about potential benefits “I’ll take whatever is given to me, and I’ll do my research so that I’m prepared when I walk in that doctor’s office.” “You can at least get your questions together for when you are going to get an answer. Then I would use that information to go on the internet and look or search or talk to various people.” “I will try to use that to educate myself.” “It’s very good if it can be on the computer because I can look at it. My daughter, she wants to be a doctor too, and then she can explain to me more about the test. . . . But I think maybe they should have a little advice, because some people, they are scared.” “I do searches all the time and especially the National Institutes of Health Web site. It’s a super place to get information, really great to get information about drugs or medical conditions. I love it.” “I tell you what—if you have to sit there in the doctor’s office and you get really bad news out of the blue, you are stunned. You can’t think, and then you walk away. And the next day you’re thinking, why didn’t I ask this. So I think if I found out soon, I could be better prepared for the visit, my doctor’s visit.” “Being able to see what they’re doing, almost like being on the same page as the doctor—we are kind of like equals because we are both actually looking at something we both understand.” “For me it would give me a sense of control, then I could be a better advocate for myself. I don’t expect the doctor to cure me. He’s gonna help me in the process, but there are things that if I have a better understanding, I can do better for myself.” “I would like to have direct access cause I could study more and then I could really find out what’s going on. I know they know. But I would study it till I really figure out what it is. I mean, I could deal with it direct.” “One of the other things that we all tend to do is . . . I have this test and I tell my friend, and she has already had this test. It’s some comfort to find some other people, family that can get you used to the idea.” “If you get this information early instead of having to wait to go back to your PCP for them to do a referral, you could either go ahead and call ahead and say, ‘This is what it said,’ and ‘Get me an appointment,’ if you have to have a referral from your PCP, or you yourself can go ahead and call the specialist because a specialist is much more difficult to get an appointment with.” Note: PCP ⫽ primary care physician.
been associated with greater well-being and better health outcomes in multiple clinical settings, mostly involving chronic diseases [15-19]. On the basis of our findings, we suggest that perhaps radiologists could also facilitate patient autonomy in a limited but potentially meaningful way. Autonomy for any given action is a matter of degree, and people can be distinguished by individual differences in their tendencies toward autonomous functioning across specific behaviors. Those who function on the autonomous end of the spectrum tend to organize their behavior regula-
tion by reflecting on possibilities and choices, whereas those on the control end of the spectrum tend to regulate behavior by focusing on perceived rewards and punishments [25]. Such variation was quite apparent among our study participants, even with our small numbers, leading us to think that issues of patient autonomy might be quite relevant and applicable to our question of radiology reporting. Making allowances for such widely varying preferences and modes of internal behavior regulation will be a key challenge in redesigning systems to make health care informa-
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tion available to patients in a more patient-centered manner. Autonomous function should be facilitated because it has been shown to lead to better outcomes, but individual patient choice for desired level of information access must be respected. Providers should facilitate making this choice process easy for patients by creating straightforward reporting systems that are optionally accessed by patients and allow for varying levels of access per patient preference. There were several limitations of this qualitative study. First, and implicit in FG methodology, is the issue of generalizability to a larger population. Focus groups are not designed for such generalizability. Although our FGs were within the recommended size, our study included a very small number of participants at a single site, with recruitment rate that was low (27%) but not atypical for studies of this type. Within these constraints, we achieved reasonable diversity among participants in terms of race and ethnicity, age, and socioeconomic status. Another concern with this type of research is the lack of “hard” data obtained, also a common issue with all FG research [22]. On the other hand, the rich data we obtained in patients’ own words seem appropriate and advantageous in our setting because we sought information at an early exploratory stage, seeking patients’ impressions of a provider service and evaluating a topic about which little is understood. The data obtained by FG methodology are especially useful in these situations, facilitating the generation of hypotheses for future quantitative research efforts. Other limitations that relate to FG methodology include that the facilitator, for purposes of maintaining the group’s discussion on the chosen topic, may significantly influence the group’s interactions, or that the presence of the group itself may affect what individuals say or do not say [21]. We sought to minimize these effects by choosing an experienced facilitator who created a high level of comfort in a nonthreatening atmosphere in which all ideas were welcome while maintaining control of the group to ensure that it was not dominated by any one member. Finally, study participants may have been different from those who chose not to participate, especially as regards greater interest in receiving radiologic results and more interest in increasing their health-related autonomy. Within its limitations, this study offers important insights about patients’ perspectives on how they are informed about personal health information related to radiologic test results. We as radiologists are concerned about patients’ opinions and satisfaction, and we are especially concerned about increasing the patient-centeredness of care in the area of radiology reporting to improve outcomes. The direct patient data from this
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794 Journal of the American College of Radiology/ Vol. 6 No. 11 November 2009 18. Williams GC, Freedman ZR, Deci EL. Supporting autonomy to motivate glucose control in patients with diabetes. Diabetes Care 1998; 21:1644-51. 19. Ryan RM, Plant RW, O’Malley S. Initial motivations for alcohol treatment: Relations with patient characteristics, treatment involvement and dropout. Addict Behav 1995;20:279-97. 20. Krueger RA, Casey MA. Overview of focus groups. In: Focus groups: a practical guide for applied research. 3rd ed. Thousand Oaks, Calif: Sage; 2000:3-19. 21. Morgan DL. Focus groups as a qualitative method. In: Focus groups as qualitative research. 2nd ed. Thousand Oaks, Calif: Sage; 1997:7-17.
22. Stewart DW, Shamdasani PN. Introduction. In: Focus groups: theory and practice. Newbury Park, Calif: Sage; 1990:9-32. 23. Angel R, Cleary PD. The effects of social structure and culture on reported health. Soc Sci Quart 1984;65:814-28. 24. Deci EL, Eghrari H, Patrick BC, Leone DR. Facilitating internalization: the self-determination theory perspective. J Pers 1994;62: 119-42. 25. Ryan RM, Deci EL. Self-regulation and the problem of human autonomy: does psychology need choice, self-determination, and will? J Pers 2006;74:1557-85.