Study: Cancer patient perspectives on portal access to their radiology information
Not many hospital radiology departments and imaging centers today offer easy access by patients to their diagnostic images and reports. Perhaps they should.
Lung cancer patients receiving treatment at the University of California Los Angeles who were surveyed about what medical records they would like to have online access identified that diagnostic imaging was important to them. While the survey was of a very small group of patients with a potentially fatal disease who had strong motivation to be knowledgeable about their condition and treatment, its findings may be reflective of a broader patient spectrum. Such a service could help enhance the visibility of radiology as a profession and of individual radiologists who provide diagnoses.
A multi-department research team developed the survey as part of an initiative to develop a patient portal for patients with nonsmall cell lung cancer undergoing treatment, according to lead author Mary McNamara of the department of bioengineering in an article published in the August issue of the Journal of the Association for Information Science and Technology. They wanted to gain insight into what information and features were important to patients. The research team included oncologists and radiologists.
The research team’s objective was to create a portal supporting consumer health content to patient records – a linkage designed to provide relevant information to patients who wanted to know more about their condition. The team designed an information schema based on a literature review of patient information needs and preferences, existing guidelines for practitioners and patients, and practitioner input. They survey was developed to validate the schema. Questions included types of information and content desired by patients, record format preferences, levels of anxiety caused by information access, and concerns regarding portals, potential increases in patient adherence to practitioners’ directions, and potentially improved outcomes due to information access.
The anonymous survey questionnaire was offered to approximately 300 patients at the check-in desk prior to treatment. A total of 41 patients completed the questionnaire.
The respondents represented a spectrum of education levels, ranging from a high school education to advanced degree holders. More than half of the patients stated that they were using the internet to obtain health information, and more than half stated that they were tech savvy and computer proficient.
Ninety percent wanted online access to their patient records. Ninety percent wanted access to their radiology test results and images. The majority of these patients wanted to know the important findings that were identified from their diagnostic imaging exams, as well as having understandable explanations of their radiology reports. This desire for radiology-related information was expressed by all educational levels of patients.
“This desire for radiologic information may be linked to patients anticipating that images will help them manage their health and that the images provide a record documenting how they respond to treatment,” wrote the authors. “47% strongly agreed and 34% agreed that understanding their medical images would help them to manage their health problems. Furthermore, of those who wanted to ‘know important things the doctor saw’ in their images, 85% agreed or strongly agreed that understanding their medical images would help them manage their health problems.”
The authors stated that this finding would require modification of the information schema. They also noted that as with other medical content such as laboratory results and clinical notes, the radiology information that is provided to physicians cannot simply be transferred to a patient portal. They explained that radiologic content would need to be explained in a view that is relevant to a patient’s information needs.
They added, “One possibility is to provide patients with images that indicate the region of interest to direct their focus to the areas relevant to their diagnosis. However, patients also should have the option to access finer levels of detailed information, such as a complete image series, if they so desire. At the same time, to mitigate the possibility of information overload, patients should be guided via an information narrative.
The schema they decided to develop relating to radiology is a narrative for information that is problem-oriented and integrated into the context of the diagnosis.
REFERENCE
- McNamara M, Arnold C, Sarma K, et al. Patient Portal Preferences: Perspectives on Imaging Information. 2015 J. Assoc Inf Sci Technol.; 66(8): 1606-1615.