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Journal of Oncology Practice, Vol 5, No 4 (July), 2009: pp. 177-181 © 2009 American Society of Clinical Oncology. DOI: 10.1200/JOP.0942004
Electronic Surveillance of Testicular Cancer: Understanding Patient Perspectives on Access to Electronic Medical RecordsUniversity Health Network; and University of Toronto, Toronto, Ontario, Canada Corresponding author: Kevin J. Leonard, MBA, PhD, CMA, Associate Professor, Department of Health Policy, Management & Evaluation, Faculty of Medicine, University of Toronto, 155 College Street, 4th Floor, Toronto, Ontario M5T 3M6 Canada; e-mail: k.leonard{at}utoronto.ca.
Purpose: To understand patient perceptions and attitudes regarding online access to testicular cancer surveillance test results, and to identify factors that may be important in maximizing referencing of electronic medical records (EMRs) by patients for these results. Methods: In this qualitative study, seven focus groups were conducted with a total of 22 patients undergoing surveillance for testicular cancer. Transcript data were analyzed iteratively using combined manual and computerized coding by two independent coders to generate a theoretic framework grounded in the data. Results: Practicality, meaning of information, patient-physician relationship, risk of recurrence, and role of technology were identified as interrelated factors that frame how patients regard potential surveillance technology. The influence of each factor hinged on its relationship with reassurance—the central predominant factor. Additionally, time since start of surveillance seemed to affect the relative importance of all other factors. Conclusion: Prevailing models of technology acceptance understate the complexity of the situation of the patient user and the implications of online access to health information. Surveillance for testicular cancer seems to be a suitable context for patient access to EMR information if patient perspectives are to be understood and considered. Reassurance is the overriding element influencing attitudes.
Electronic medical records (EMRs) have been the subject of much discussion and controversy of late. At present, EMRs refer to records maintained in hospitals and physician offices (they are sometimes called electronic health records or EHRs). These records contain information that is entered directly by the physician or through other health system interfaces. This study explores the basis for providing effective access to EMR data as a reference source for patients with early-stage testicular cancer involved in surveillance follow-up programs. This study refers to EMRs in a hypothetic sense, as an online tool for which specific attributes have yet to be defined. The main operative function, as understood by participants, was access to surveillance test results (eg, laboratory values and imaging reports) through a patient portal. This was the crux of focus group discussions. Proponents of patient use of EMRs foresee benefits such as more active roles for patients in their health care, better understanding among patients of health and illness, facilitation of communication, and enhanced patient-physician relationships. (In this context, EMRs are distinctly separate from personal health records or PHRs, which are records into which data are entered by patients and stored for patients' personal use only.) Despite these perceived benefits, widespread use of EMRs and other electronic health applications by patients has not yet occurred. This may be attributable to a combination of various factors and circumstances; however, it seems that one major shortcoming is that a fundamental understanding of what will determine successful implementation and patient acceptance and use is lacking. Many endeavors in patient access to electronic health programs have been premature, because those implementing them have failed to appreciate patient perspectives and built erroneous assumptions into systems. In attempting merely to adapt EMR systems that were created on the basis of physician perceptions and medical idiom for patient use, the mark may be missed with respect to patient needs and preferences.
Surveillance
EMRs Although potential benefits from patient access to EMRs are perceived, there are significant limitations in the approach to design and development of these applications. The fundamental flaw in these research approaches that may hinder our understanding of acceptance, use, and benefit of patient access to EMRs is failure to adequately understand and incorporate patient perspectives. It is crucial that concepts related to patient preference are represented and included in EMRs if they are to be meaningfully accessed through portals and referenced by patients.2 Despite this realization, research conducted on the basis of involving the user (ie, the patient) in the design process has been minimal.3 Qualitative studies have identified issues surrounding suboptimal effectiveness of EMR applications and attributed inadequacies to lack of fit between the system and the needs of the user.4,5 It is inevitable that in most projects to provide patient access to EMRs (ie, patient portals) that are being designed from the standpoint of practitioners and technicians, assumptions—potentially erroneous—will be built into the applications. Physicians and patients have different relationships with health and illness and may have drastically different perceptions of the meaning, value, and consequences of specific online health information. It seems essential to explore patient perspectives and minimize patient-physician discordance for the successful implementation and effective use of patient-accessible EMRs.6 Winkelman7 criticizes studies for employing physician-centered design and evaluation frameworks while describing approaches as patient centered. Winkelman adds that it may be most useful to construct patient-accessible EMRs from the ground up, with preprototype design phases that reflect understanding, consideration, and incorporation of patient perspectives.
Focus group participants were selected from a clinic database of approximately 600 patients undergoing surveillance for stage I testicular cancer at Princess Margaret Hospital (Toronto, Ontario, Canada). Patients were initially recruited by their primary physicians, and the language and means used to introduce potential participants to the nature of the study were approved by the institutional research ethics board to minimize potential for coercion. In total, 22 survivors of testicular cancer participated in focus groups (Table 1). The mean age of focus group participants was 39.8 years, and approximately 75% of participants resided in the greater Toronto area. The location of residence was a potential although unlikely source of bias, because the proportion of patients undergoing surveillance living in Toronto was overrepresented in this sample. This is largely attributable to the fact that focus groups were conducted in the early evening in downtown Toronto, making travel more difficult.
A series of seven focus groups was conducted. The size of the groups ranged from two to six participants, and the groups were all led by the same moderator. Informed consent was obtained from each participant before focus group interviews. Each focus group lasted approximately 90 minutes. A semi-structured open-ended focus group interview guide was developed on the basis of an initial review of the literature in addition to proposed research questions and objectives. Because iterative analysis took place, some aspects of the guide were altered according to emerging themes and concepts. Transcript analysis was performed by two independent investigators, and discrepancies were addressed and resolved through regular discussions and ultimate consensus.
A significant pattern of patient perceptions on surveillance was identified from the data. The pattern included the following key themes, which are conceptually linked:
However, the nucleus of our findings is related to the concept of reassurance, which seemed to be a sine qua non for survivors of testicular cancer. All other factors were to a large extent experienced in relation to reassurance and were eclipsed by it in terms of significance. In addition, temporality (ie, the timing of the introduction to the EMR through the portal with respect to the proximity of diagnosis) also emerged as a recurrent theme that seemed to act as a dimension conditioning all other factors, their relative importance, and their association with one another. The role of technology was the only component that applied exclusively to a hypothetic online tool, whereas all other factors indirectly explained how patients regarded the traditional surveillance process itself as experienced.
Reassurance: The Prevailing Factor and Fundamental Issue
Practicality One practical issue in surveillance identified in focus group discussions was the decision of whether to undergo surveillance investigations on the same day as the clinical encounter with the physician. Making separate trips to the hospital is objectively more time consuming, less convenient, and less efficient; however, some patients viewed these as worthwhile sacrifices in practicality for the opportunity to discuss test results face to face with their physicians. This clearly has implications for remotely accessing test results via online EMRs, which may be practical but may also have variable and unpredictable effects on reassurance.
Meaning of Information to Patients Undergoing Surveillance Test results seemed unanimously viewed as information crucial to patients undergoing surveillance. Each individual required and desired test results in varying degrees of scale, magnitude, and detail. What dictated these varying preferences for information detail or depth seemed to be what was required of the information by an individual to provide reassurance. Even in the face of entirely normal surveillance test results, "everything is fine" may suffice for some patients, whereas reassurance may be optimized for others only with greater detail, such as specific laboratory values or a synopsis of computed tomography scan results. Some patients felt that a computer may be an impersonal, insensitive, and inappropriate means of conveying abnormal test results. Of most concern was the lack of immediate contact with a trusted physician and the opportunity to have questions and concerns addressed promptly. In summary, the meaning of information to patients with testicular cancer in the context of surveillance is mostly explained by its capacity to affect reassurance.
Patient-Physician Relationship "I guess there is an element of comfort in my surveillance program, knowing that the doctor is going to watch over you, right?" As focus group discussions unfolded, patients speculated on means to confirm and even certify physician involvement in their care through EMR access. Participants felt that knowing their physicians had reviewed the surveillance information would instill confidence and reassurance; they believed that the reassurance of meeting with physicians in person could possibly be gained without face-to-face interactions on the condition that electronic transmissions were personalized by physicians. In other words, reassurance can be achieved as long as physicians review the results and communicate those results. This does not necessarily imply that visits with physicians are not required; rather, it indicates that similar reassurance can be achieved by accessing information through a patient portal.
Perceived Risk of Recurrence Constans9 demonstrated that anxiety and risk perception are related, and the relationship is bidirectional. In other words, high level of perceived risk leads to anxiety (or lack of reassurance), and higher states of anxiety lead to overestimations of risk. In our study, it was also found that proximity to a significant event is associated with both increased anxiety and perceived risk. According to accounts of focus group participants, both perceived risk of recurrence and associated psychologic distress were magnified immediately preceding surveillance visits compared with other times. Some studies of health behavior, particularly in preventive medicine, have suggested that perceived risk is a key motivational factor in individuals.10 Other studies have found that risk perception alone is not a strong motivational factor in health behavior, but other factors such as recommendations from personal physicians, belief that behavior can alter risk, self-efficacy, and practical issues like convenience and cost are more predictive.11 When focus group participants speculated about using EMRs to access surveillance test results, perceived risk of recurrence seemed to be an important factor for consideration because it was related to reassurance.
Perceived Role of Technology: Substitute or Supplement There are perceived benefits in patients being able to access test results at their convenience. The role of EMRs is flexible and may be different depending on the patient, stage of illness, and circumstances. The disinclination to replace conventional surveillance with an online resource was echoed by several participants in different focus groups and was typically attributed to a concern that reassurance would be compromised by loss of personalization of care.
Effect of Time
The findings from this study should be considered as an essential first step in designing and delivering patient-accessible test results via EMRs. Although it is possible that these factors do represent actual determinants of consumer-oriented technology, we are quite confident that they play a significant role in the success of such technology. Consequently, we conclude with a short list of proposed factors for consideration by researchers, practitioners, and technicians when embarking on patient-access EMR-based technology, particularly in the setting of cancer follow-up care.
In short, awareness of patient reassurance as the overriding and mediating factor in surveillance permits its consideration in design, development, and implementation of a technologic application for patients. It should be appreciated that EMR-based technology in the context of active cancer surveillance should add to that reassurance, or at least, it should not reduce it. Optimizing reassurance with intervention of information and communication technology (either enhancing reassurance provided by conventional surveillance or offering other patient-perceived benefits from EMR-based resources without compromising aspects of surveillance that afford reassurance) should be realized as an objective that may maximize the likelihood of successful implementation and meaningful use.
The author(s) indicated no potential conflicts of interest.
This research was supported in part by the Canadian Institutes for Health Research/Michael Smith Foundation for Health Research Health Informatics PhD/Postdoctoral Strategic Training Program. accepted January 28, 2009.
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Copyright © 2009 by the American Society of Clinical Oncology, Online ISSN: 1935-469X. Print ISSN: 1554-7477
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Abstract
Introduction
