Practitioner guidelines simultaneously provide broad overviews and in-depth details of disease. Written for experts, they are difficult for patients to understand, yet patients often use these guidelines as a source of information to help them to learn about their health. Using practitioner guidelines along with patient information needs and preferences, we created a method to design an information model for providing patients access to their personal health information, linked to individualized, relevant supporting information from guidelines within a patient portal. This model consists of twelve classes of concepts. We manually reviewed and annotated medical records to demonstrate the validity of our model. Each class of the model was found within at least one patient's record, and seven classes of concepts appeared in over half of the patients' records annotated. These annotations show that the model produced by the method can be used to determine what guideline information is relevant to an individual patient, based on concepts in their health information.

Patient portals have the potential to provide content that is specifically tailored to a patient's information needs based on diagnoses and other factors. In this work, we conducted a survey of 41 lung cancer patients at an outpatient lung cancer clinic at the medical center of the University of California Los Angeles, to gain insight into these perceived information needs and opinions on the design of a portal to fulfill them. We found that patients requested access to information related to diagnosis and imaging, with more than half of the patients reporting that they did not anticipate an increase in anxiety due to access to medical record information via a portal. We also found that patient educational background did not lead to a significant difference in desires for explanations of reports and definitions of terms.

Objective

With the increased routine use of advanced imaging in clinical diagnosis and treatment, it has become imperative to provide patients with a means to view and understand their imaging studies. We illustrate the feasibility of a patient portal that automatically structures and integrates radiology reports with corresponding imaging studies according to several information orientations tailored for the layperson.

Methods

The imaging patient portal is composed of an image processing module for the creation of a timeline that illustrates the progression of disease, a natural language processing module to extract salient concepts from radiology reports (73% accuracy, F1 score of 0.67), and an interactive user interface navigable by an imaging findings list. The portal was developed as a Java-based web application and is demonstrated for patients with brain cancer.

Results and discussion

The system was exhibited at an international radiology conference to solicit feedback from a diverse group of healthcare professionals. There was wide support for educating patients about their imaging studies, and an appreciation for the informatics tools used to simplify images and reports for consumer interpretation. Primary concerns included the possibility of patients misunderstanding their results, as well as worries regarding accidental improper disclosure of medical information.

Conclusions

Radiologic imaging composes a significant amount of the evidence used to make diagnostic and treatment decisions, yet there are few tools for explaining this information to patients. The proposed radiology patient portal provides a framework for organizing radiologic results into several information orientations to support patient education.

BACKGROUND:The Memory Support Intervention was developed in response to evidence showing that: (1) patient memory for treatment is poor, (2) poor memory for treatment is associated with poorer adherence and poorer outcome, (3) the impact of memory impairment can be minimized by the use of memory support strategies and (4) improved memory for treatment improves outcome. The aim of this study protocol is to conduct a confirmatory efficacy trial to test whether the Memory Support Intervention improves illness course and functional outcomes. As a "platform" for the next step in investigating this approach, we focus on major depressive disorder (MDD) and cognitive therapy (CT). METHOD/DESIGN:Adults with MDD (n = 178, including 20% for potential attrition) will be randomly allocated to CT + Memory Support or CT-as-usual and will be assessed at baseline, post treatment and at 6 and 12 months' follow-up (6FU and 12FU). We will compare the effects of CT + Memory Support vs. CT-as-usual to determine if the new intervention improves the course of illness and reduces functional impairment (aim 1). We will determine if patient memory for treatment mediates the relationship between treatment condition and outcome (aim 2). We will evaluate if previously reported poor treatment response subgroups moderate target engagement (aim 3). DISCUSSION:The Memory Support Intervention has been developed to be "transdiagnostic" (relevant to a broad range of mental disorders) and "pantreatment" (relevant to a broad range of types of treatment). This study protocol describes a "next step" in the treatment development process by testing the Memory Support Intervention for major depressive disorder (MDD) and cognitive therapy (CT). If the results are promising, future directions will test the applicability to other kinds of interventions and disorders and in other settings. TRIAL REGISTRATION:ClinicalTrials.gov, ID: NCT01790919 . Registered on 6 October 2016.