Abstract

Summary: Background and Objective: This study sought to extend the existing research regarding patients’ reactions to viewing laboratory test results online by: (a) investigating patients’ emotional responses to viewing test results online, (b) determining what, if any, followup actions patients engaged in after viewing their test results online, and (c) examining the impact of preparatory conversations between physicians and patients on patients’ emotional and behavioral responses.
Methods: An email survey of Kaiser Permanente members was conducted. Study participants were patients who had viewed at least one test result online within the past year.
Results: A total of 1,546 patients responded to the survey; response rate was 43%, completion rate was 39%. Survey participants reported high levels of satisfaction, appreciation, calm, happiness, and relief. Few experienced worry, confusion, fear, upset, or anger. The most common followup activities to viewing lab test result online were speaking with family or friends about the results, looking up information on websites, and making a graph of the pattern of test results over time. Patients whose doctors spoke with them about what to expect from their test results experienced significantly more relief, appreciation, satisfaction, happiness, calm; and, less confusion than those who did not speak with their doctors prior to viewing their results. Patients whose expectations were set by their doctors were also less likely to engage in a host of followup activities, including emailing and telephoning doctors and scheduling additional appointments.
Conclusion: This study demonstrates that patients who view their lab test results online overwhelmingly react with positive rather than negative emotions. The results also illustrate the influence of physician-patient prior communication on patients’ reactions and their followup actions.
Keywords: Test results, PHR, patient portal, patient engagement, patient-centered care.
Citation: Christensen K, Sue VM. Viewing laboratory test results online: patients’ actions and reactions. J Participat Med. 2013 Oct 3; 5:e38.
Published: October 3, 2013.
Competing Interests: This research received no specific funding from any funding agency in the public, commercial or not-for-profit sectors. This research was approved by the Kaiser Permanente Northern California Institutional Review Board. The authors have no financial or non-financial, professional or personal competing interests to disclose.

Introduction

Patient access to laboratory test results via online patient portals is growing across the United States and other countries. [1] This increasing access is being accompanied by widespread concern about patients receiving results without the intermediation of physicians. Traditionally, physicians have been responsible for explaining test results to patients and putting the results into the context of the patient’s entire health picture. The concerns are that: (1) patients seeing abnormal test results will react negatively with anxiety or other harmful emotional reactions; (2) patients will not understand the results, whether normal or abnormal, and will need extra time from the physician to explain what they mean. [2][3][4] A corollary concern is that patients will be unnecessarily worried about the clinically insignificant results that fall outside of the reference range, or about expected results that fall out of this range, such as an International Normalized Ratio (INR) for a patient on an anticoagulant. [5]

Research evidence indicates that these concerns may be unfounded. Studies have shown that for the most part patients do not react negatively to the idea of viewing their test results online, and report that they are not concerned about the privacy of those records. [2][6] In a study focused on electronic access to medical records Pyper et al [7] discovered that although some medical terms and abbreviations did require explanation, the majority of patients in their study found the content of their medical records generally useful and easy to understand. Moreover, numerous studies have demonstrated that patient satisfaction increases as patients gain greater and faster access to their medical records.[8][9] None of these studies asked specifically about patients’ emotional reactions and followup actions after seeing online test results.

Concerns that providing patients access to their electronic medical records will increase physician workload are unsubstantiated in the literature. Ross et al [3] noted that merely giving patients access to their medical records did not appreciably increase workload, and in some cases increased efficiency because patient-held records were more likely to be available at the time of appointments than hospital-held records. Similarly, Rodriguez et al [10] showed that contrary to expectations, 6 months following the implementation of an expanded offering of laboratory results on a patient portal, physicians and nurses said their workload actually decreased or stayed the same.

Although the existing literature does not support the notion that releasing laboratory test results to patients online will result in negative consequences for patients and physicians, there is still some ambiguity surrounding the potential impact of a-priori patient-physician conversations about test results. This study seeks to extend the existing evidence by: (a) investigating patients’ emotional responses to viewing test results online, (b) determining what, if any, followup actions patients engaged in after viewing their test results online, and (c) examining the impact of preparatory conversations between physicians and patients on patients’ emotional and behavioral responses.

Methods

Setting

Kaiser Permanente (KP) is a not-for-profit integrated health care organization serving nine million members in nine states and the District of Columbia.

Kaiser Permanente began offering online health services in 1996. My Health Manager, KP’s personal health record (PHR), allows members to view parts of their medical record including: laboratory results, immunizations, details about past office visits, prescriptions, allergies and health conditions. The member website also allows KP members to conduct clinical transactions, such as scheduling or canceling appointments, and refilling prescriptions for themselves and family members. Members may also email their doctors via secure messaging.

Additional features available on KP’s member website include numerous health and wellness programs, account management services, health and drug encyclopedias and facility and provider directories. The website’s health information and directories are free and available to the public; however, registration and sign-on are required for KP members to access the PHR features. At the end of 2012, 4.1 million KP members, 66% of those who were eligible, were registered to use the patient website.

Online Laboratory Test Results

Introduction of the online laboratory test results feature at KP began in 2005 and was completed in 2007. The decision making process about which results to make available to patients was based on an explicitly patient-centered approach, which recognizes that the results belong to the patient, barring legal or real patient safety issues. Although there are variations among KP’s regions, the vast majority of test results are available to patients at the same time they are available to the ordering physicians. Other results are available after a delay of up to three days, to give the physician time to discuss the result with the patient. For example, genetic test results are generally revealed within the context of a conversation with the ordering clinician, so that appropriate context and counseling can be provided. Even smaller subsets of results are blocked from viewing online, to comply with some state laws, for example HIV results in California. Currently, the test results feature does not include radiology and pathology results.

On the test results pages of the KP website members can view the results of their test, the standard range for the test, and general information about the type of test. Also included are comments their doctors may have added, such as, “This is heading in the right direction,” and details such as when followup tests should be done. Members may view their test results as many times as they wish and results of past lab test remain in the members’ accounts indefinitely. The feature enables members to view past test results, including the option of graphing the results over time, as well as the ability to create printer-friendly versions of the results. See Figure 1 for a screen shot of KP members’ view of the test results feature on the KP website.

Figure 1. Screen shot of lab test results feature on the KP patient website.

Utilization of the lab test results feature on the KP member website has increased steadily since its introduction (see Figure 2). Between 2008 (the first full year the feature was available to KP members in all regions) and 2012, use of the feature increased 93%. It was the most frequently used PHR feature each year and enjoys consistently high satisfaction ratings on member surveys, eg, 88% of 2,987 members participating in a December 2012 survey said they were satisfied or very satisfied with the lab test results feature on the KP website. Of the remaining survey participants, 3% were neither satisfied nor dissatisfied, and 8% said they were dissatisfied or very dissatisfied. The survey did not contain a probe asking about the reasons for dissatisfaction.

Figure 2. Utilization of lab test results, 2007 – 2012.

Survey

Data for this study are from a survey of KP members who were registered for the patient website and who had viewed at least one lab test result on the KP website in the preceding year.

A random sample of members from KP’s member research panel was invited to participate in the online survey. KP’s research panel comprises approximately 25,000 KP members who agree to participate in KP research projects. Members are randomly sampled from those registered to use the KP member website and invited to join the research panel. Members of the panel are then randomly sampled and invited to participate in particular studies. The survey for this project was conducted in the fall of 2012. During the two weeks that the survey was open for participation one reminder email was sent to help increase the response.

The KP Northern California Institutional Review Board reviewed and approved an application to conduct this study.

Questionnaire

Respondents to this study answered questions about their emotional reactions to viewing test results online, what (if any) actions they took subsequent to viewing their test results, and whether their doctors communicated with them about the test results either before they viewed their results or afterward. The survey questionnaire was developed by KP staff and pre-tested with a separate small sample of members from the member research panel. After editing the questionnaire for clarity and question order, the survey was deployed to a larger random sample of panel members.

Results

Participants

A total of 4,000 members were invited to participate in the survey; 1,711 responded; however, 165 were disqualified because they were KP employees or had not viewed a lab test result in the past year. The survey response rate was 43% and the completion rate was 39%. More than half of the survey participants were women (56%). They ranged in age from 20 to 97; the median age was 58. Relative to the population of patients registered for the patient website, the survey respondents were older, more highly educated, and less racially/ethically diverse (see Table 1 for a comparison of the sample and population demographic characteristics).When asked to report their overall health, 51% of respondents said “very good” or “excellent,” 35% said “good,” and 14% reported that they were in “fair” or “poor” health. Self-reported health assessment is not collected for the all website-registered members, so it is not possible to compare the sample and population on this dimension.

Table 1. Survey respondents’ and website population demographic characteristics.

Most survey respondents viewed lab test results on the KP website at least two times in the preceding year (see Table 2) and 41% remembered doing so within a month of the survey’s administration. More often than not, participants viewed test results for themselves only (84% of respondents). A small proportion viewed test results for themselves and someone else (9%), and 6% viewed test results for only someone else. The KP website allows members to establish proxy relationships for family members so that they may act on their behalf. With these relationships in place, members may view lab test results for those with whom they have established proxy access.

Table 2. Respondents’ test results utilization in past year.

Reactions

To determine how members react to viewing lab test results online, respondents were asked to indicate the extent to which they felt: satisfied, appreciative, calm, happy, relieved, worried, confused, afraid, upset, and angry after viewing their last test results on the KP website. They used a one-to-five-point scale where one meant “not at all,” and five meant “extremely.” Table 3 shows the means and standard deviations and the percent reporting four and five for each of the dimensions. Large percentages of participants indicated that they felt extremely: satisfied, appreciative, calm, happy, and relieved. Small proportions of respondents said they felt extremely: worried, confused, afraid, upset, or angry as a result of viewing lab test results online.

Table 3. Reactions when viewing test results online.

The most common thing members did after they viewed their online lab test results was to speak to family and friends about the results (see Table 4). Other typical activities were: looking up information on the KP member website, using the graphing tool of the test results feature to make a graph of their results over time, and looking up information on website other than KP’s (such as WebMD). A small fraction of respondents said they communicated with their doctors via email or telephone or made a doctor’s appointment as a result of viewing their test results.

Table 4. Actions taken after viewing online lab test results.

Survey respondents who said they used the KP website to look up information were asked to rate the helpfulness of the information they found on the website. Nearly eight out of ten (78%) respondents said they found the information on the KP website to be helpful or very helpful (see Table 5).

Table 5. Helpfulness of kp.org information about test results.

To test the hypothesis that a-priori conversations with doctors about what to expect from lab test results would make a difference in members’ reactions when viewing their results, we compared members who reported that their doctors told them what to expect with those who said their doctors did not have these conversations with them. Table 6 shows the mean values on the emotional response items for the two groups of survey respondents. Only respondents who responded with “yes” or “no” to the question about remembering conversations with doctors were included in this analysis; participants who said they “didn’t remember” if a conversation took place were omitted. Members whose physicians set expectations about the test results were significantly more relieved, appreciative, satisfied, happy, calm, and less confused. The measures of effect size (Cohen’s d) range from .15 to .26, indicating that these were small but statistically significant relationships. There were no significant differences in the degree to which members felt upset, afraid, angry or worried.

Table 6. Reactions when viewing test results online by doctor discussion.

We also examined members’ followup actions to determine if conversations with doctors made a difference in behaviors. The results in Table 7 show that the members whose doctors did not set expectations about the test results were significantly more likely to speak with family and friends about the results, look up information on the KP website, graph their results using the online feature, and look up information on a non-KP website. There were no significant differences in emailing doctors, making doctors’ appointments or telephoning doctors.

Table 7.> Actions after viewing test results online by doctor discussion.

Discussion

The goal of this study was to investigate patients’ emotional reactions to viewing lab test results online and the actions they take after they view their results. We discovered that satisfaction, appreciation, calm, happiness, and relief were the most strongly experienced emotional reactions. Although some patients did experience worry, confusion, and fear, we did not find evidence that these reactions were widely held among our respondents. Communication with family and friends and information seeking behaviors were the most common actions taken after viewing lab test results on the KP website.

Anecdotal and formal evidence during the past 10 years has demonstrated that most patients who use the Internet want to view their laboratory test results online, with only a small percentage preferring to hear their results only from their doctors. Physician concerns about negative patient reactions might be contributing to a delay in the wide implementation of online test results, even when the software is already available. These concerns might also give rise to a restrictive approach to online test results access. This approach might provide access for only a limited set of results with which the physicians are most comfortable, or might provide a very long delay between results availability in the chart and access by the patient. Delaying access to lab test results has been shown anecdotally in the KP system to give rise to increased phone calls and complaints to medical offices, as patients worry most about the results they cannot see, assuming something must be wrong.

This study of more than 1,500 patients who use a patient portal, and who have viewed at least one test result online, shows that concerns about negative reactions are largely unfounded. Although there are exceptions, most did not react negatively, and in fact reacted quite positively to seeing their test results.

Access to test results online is not meant to take the place of a conversation between the doctor and patient. Many tests need to be explained to the patient, so he or she can anticipate what the results might mean in his or her particular situation. When ordering the test as part of an office visit, the physician has an opportunity to also alert that patient that the result will be accessible online, and that an interpretive note from the physician will be added if relevant. For patients such conversations with doctors prior to viewing online lab test results made a difference for some emotional reactions and followup behaviors.

Of the members in our study who emailed or telephoned their doctors or made doctor’s appointments, more did not have preparatory conversation with their doctors than did prior to viewing their results. However, the relatively small number of members engaging in these activities made significant differences difficult to detect. The trend of the differences we observed is nonetheless intriguing and warrants further research.

These findings point to the importance of the preparatory conversation when a test is ordered whose results will be available to the patient online. Moreover, there are certain tests that need to be explained, at least the first time they are ordered, such as the INR for persons taking anti-coagulants. The usual hoped for result would be considered ‘abnormal’ or outside of the reference range. Some test results may also be outside the reference range but still considered acceptable for that individual, given their clinical context. For example, the hemoglobin A1c for diabetics might be high, but still much improved over a previous result, and in the acceptable range for that particular patient. Once patients have been informed by their physicians about the expected results, viewing those results online might become more reassuring. More investigation is needed to uncover the components of preparatory conversation that are most helpful to patients. This could lead to better training programs for physicians in this area and optimal use of the online lab test results capability currently available.

Limitations

This study relied on survey data from KP’s member research panel, a group known to be more actively engaged in their health than typical KP members. The survey sample was, on average, older than the population of patients registered for the patient website. This is not surprising as older patients are more likely than younger patients to have lab test results to view (a condition of participating in the survey). Older patients are also the most active users of the lab test results feature on the KP website.[11] The age skew in the survey sample, nonetheless limits our ability to generalize these findings to other age cohorts. Similarly, the survey sample contains a greater proportion of patients with graduate degrees and a smaller percentage with low incomes than does the population of website-registered patients. Because educational attainment is likely to impact one’s ability to independently read and interpret lab test results, this bias in the sample presents another limitation to the study’s generalizability.

Future research could build on this work and investigate the reactions to viewing lab test results online among non-white, lower socioeconomic patients who are in poorer health.

Our analyses were based on survey data; we are therefore unable to make causal inferences with respect to physician-patient conversations and reactions to viewing lab test results online. Our results point to various associations between conversations with doctors and patients’ reactions and behaviors. To determine if these conversations cause any change in patients’ behaviors, future studies employing controlled experimental designs should be conducted.

In this study we did not inquire about the nature of the lab test result the patients viewed; for example, if it was positive, negative, better or worse than expected, and so on. Followup studies should include questions about the general content of the test results so that the patients’ reactions can be examined in light of this.

It is important to restate that at the present time test results available to patients on the KP website are limited to laboratory test results, such as blood and urine tests. Arguably, pathology and radiology results, which are not yet available online, might result in more confusion, fear or worry. Further research should investigate, in a controlled setting, patients’ reactions to viewing additional classes of test results. For now, we can say that patients do not react negatively when seeing routine laboratory test results online. There are also test results that should only be released after a time delay, so that the physician has time to discuss the result with the patient, for example, some genetic testing. This practice is also designed to decrease negative emotional reactions to viewing test results online.

Conclusion

The findings that patients largely react positively to seeing test results online should be reassuring to physician practices that are considering adding a patient portal with PHR to their practice websites. For practices that have already implemented online test result access but are still limiting access to a small number of results, our findings might provide a good basis for expanding access to results. For our own system, we will look to these results for further research directions, including probing into the content and impact of the preparatory discussion, with the aim of helping physicians use their office visit time to the most efficient end. And finally, for patients, this study confirms what they have long known, that they want and can handle the results of their laboratory tests, and are for the most part eager to see those results as soon as possible.
 

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Copyright: © 2013 Kate Christensen and Valerie M. Sue. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.