Research and applications Imaging informatics for consumer health: towards a radiology patient portal Corey W Arnold,1 Mary McNamara,1 Suzie El-Saden,2 Shawn Chen,1 Ricky K Taira,1 Alex A T Bui1 1Medical Imaging Informatics, ABSTRACT look up health information online verified it with Department of Radiological Objective With the increased routine use of advanced their physicians.7 Sciences, University of fi California–Los Angeles, imaging in clinical diagnosis and treatment, it has Several bene ts of tailored information within Los Angeles, California, USA become imperative to provide patients with a means to patient portal applications have been demon- – 2Department of Imaging view and understand their imaging studies. We illustrate strated,8 10 including equipping patients with Services, Greater Los Angeles, the feasibility of a patient portal that automatically vetted, higher quality information regarding their VA Medical Center, Los structures and integrates radiology reports with disease or condition; and facilitating access to their Angeles, California, USA corresponding imaging studies according to several underlying medical records. However, little work Correspondence to information orientations tailored for the layperson. has been done to make the full range of radiology Dr Corey W Arnold, Medical Methods The imaging patient portal is composed of content—imaging and text—available to patients in Imaging Informatics, an image processing module for the creation of a an understandable format. This lack is in spite of Department of Radiological Sciences, University of timeline that illustrates the progression of disease, a the fact that radiology reports and images consti- California–Los Angeles, 924 natural language processing module to extract salient tute a significant amount of the evidence used in Westwood Blvd Ste 420, Los concepts from radiology reports (73% accuracy, F1 score diagnosis and treatment assessment. Even though Angeles, CA 90024, USA; of 0.67), and an interactive user interface navigable by radiology test results are one of the most difficult [email protected] an imaging findings list. The portal was developed as a portions of the clinical record for lay people to 11 Received 1 November 2012 Java-based web application and is demonstrated for understand, they are one of the most frequently Revised 9 May 2013 patients with brain cancer. accessed pieces of information via patient portals Accepted 15 May 2013 Results and discussion The system was exhibited at when available.12 This suggests the need for new Published Online First an international radiology conference to solicit feedback methods of sharing radiology information with 5 June 2013 from a diverse group of healthcare professionals. There patients. was wide support for educating patients about their One possibility for bridging consumers’ under- imaging studies, and an appreciation for the informatics standing of illness with professional disease models tools used to simplify images and reports for consumer is the use of an ‘interpretive layer’ between interpretation. Primary concerns included the possibility clinically-generated information and consumer- of patients misunderstanding their results, as well as centric disease explanations. Such a layer would worries regarding accidental improper disclosure of potentially enable lay patients to construct more medical information. accurate mental models of health, form effective Conclusions Radiologic imaging composes a search queries, navigate medical information significant amount of the evidence used to make systems, understand the information found within diagnostic and treatment decisions, yet there are few health documents, and apply the information to tools for explaining this information to patients. The their personal situations appropriately.13 In this proposed radiology patient portal provides a framework work we utilize the concept of interpretive layers, for organizing radiologic results into several information and describe a methodology for automatically com- orientations to support patient education. bining radiology data with educational information for the patient, presented through a web-accessible portal. INTRODUCTION BACKGROUND AND SIGNIFICANCE The number of patients accessing health informa- Towards satisfying patients’ wishes for access to tion online continues to rise,1 and being diagnosed records and better knowledge resources, govern- with cancer has been shown to increase the amount ment policy has been developed to provide incen- – of time an individual searches for information.2 4 tives for institutions utilizing patient portals in However, the popularity of a website is not always order to promote usage.14 The US Department of indicative of its quality.5 The dearth of quality Health and Human Services believes that such material online is reflected in the Health portals will not only increase patient access to Information National Trends Survey (HINTS), information, but allow patients to become more which found that Americans feel that online cancer active in their care. This sentiment is also reflected information is inadequate. Of those surveyed, 69% in a recent Institute of Medicine Report, which did not have a website they especially liked for emphasizes the importance of patient portals in a cancer information, emphasizing the need for continuously learning healthcare system.15 With 6 To cite: Arnold CW, trusted information resources. With the quality of this additional motivation, patient portal deploy- McNamara M, El-Saden S, sources in question, patients thus often bring up ment and use is expected to become common- et al. J Am Med Inform information they find online with their doctor; one place.16 In point of fact, the Health Level 7 (HL7) – Assoc 2013;20:1028 1036. study found that up to 90% of respondents who International Context-Aware Knowledge Retrieval 1028 Arnold CW, et al. J Am Med Inform Assoc 2013;20:1028–1036. doi:10.1136/amiajnl-2012-001457 Research and applications standard now provides a technical specification for integrating in radiologic interpretations31 32; a temporal orientation that electronic health records and personal health records with exter- shows the evolution of disease via imaging; and a source orien- nal information resources, and is increasingly being adopted by tation that allows patients to review an annotated version of – – vendors and information providers.17 19 their radiology reports.33 36 These three perspectives allow a Previous studies have found that despite the rising tendency user to navigate their radiologic information, allowing for the of patients to search for and access health information online, selective drilling down to the original image interpretations. they are often discouraged by the information they find as it is Figure 1 shows the four main components of our radiology frequently too general to elucidate the specifics of an indivi- portal interface: (1) a panel showing a patient’s ‘salient’ imaging – dual’s disease or treatment.1257 Notably, patients’ information findings, organized in reverse chronological order (figure 1A); needs are not limited to general knowledge, but also encompass (2) an information panel providing patient-oriented explana- access to their underlying medical records and the content tions of imaging techniques, disease concepts, and salient image within them.20 Indeed, receiving (accurate) information relevant findings (figure 1B); (3) an interactive panel showing only key to one’s cancer diagnosis has been shown to increase patient slices from patient imaging studies and associated extracted find- involvement in decision-making,8 and to enhance satisfaction ings from radiology reports (figure 1C); and (4) a study viewer with treatment options.9 Additionally, giving patients access to displaying the full image series with an annotated conclusion personalized health information can improve communication section from the corresponding report (figure 1D). Interactions between family members, and between patients and provi- with the portal are designed to be driven by the imaging find- ders.910The latter is especially important as it has been esti- ings list. From the list, a user may click on a finding of interest, mated that patients remember approximately only half of the which triggers the information panel to display a lay description information presented in a conversation with their physician.21 of the finding with an annotated illustration. In addition, click- Prior work shows that patient-oriented language is preferred ing a finding ‘activates’ imaging studies in a patient’s record by by patients when receiving abnormal radiology results,22 but graphically highlighting studies where the finding was noted by professional tools to explain medical concepts use expert lan- the radiologist. At any point, a user may click on a key slice guage, much of which patients do not understand.23 As such, from an imaging study to launch the study viewer. patients who do request copies of radiology reports and images generally receive this information with little or no additional System architecture and components explanatory material, and turn to their healthcare providers for The system architecture is shown in figure 2. Patients seen at the explanations. This scenario is sub-optimal in that some of the oncology clinic are pre-identified by a clinician, and on request, resultant questions could be answered with a suitable online our portal server fetches the required patient information information resource.