What prompted you to conduct this research on patient-centered clinical decision support?
Traber Giardina: The patient portal has been heralded as an amazing tool to engage and empower patients. While patient access to their health information is an essential part of patient engagement, data on the usage of these portals from many healthcare organizations shows that this tool is used far less than developers had hoped. For example, we’ve found portals to be lacking in context and information – especially test result display. In our work, patients have expressed frustration with the laboratory test result display. Patients may receive abnormal test results without explanation and only a range to interpret the results’ significance to their health status.
We know that patients struggle with understanding test results. We also know that receiving test results through the portal can be an emotionally draining experience. Simply providing access to patients is not enough – portals should be designed in a way that is meaningful and useful to patients. We conducted this work to bring patients into the design process so that we can understand the way they use this technology and create a test result display based on their input and feedback using a user-centered design process.
What are the key takeaways from your research and how do they differ from or build upon previous research?
Giardina: Our study highlights the need for user-centered design in patient portal design. Identifying patients’ information needs through needs assessments and requirement studies is a first step. However, interfaces must be designed so that the information patients need is presented in a way that is easy to use and easy to interpret. Interestingly, in our study, patients who used later versions of the prototype were more concerned with identifying information about what to do after receiving these test results than collecting information about each test result. Participants understood what the test results meant but needed to know what to do next (e.g., schedule a follow-up visit, change medications, retest in six months).
Our study builds upon a growing body of literature focused on eliciting patient information needs and requirements to comprehend test results. While this is an essential step in creating an interface that meet patients’ needs, bringing patients into the design process, via user-centered design, is necessary to identify areas of improvement for increasing patient understanding of their test results and reduce burden.
What implications do your findings have for the development and dissemination for future patient-centered clinical decision support?
Giardina: Patient portals, specifically the laboratory test result interface, would benefit from rigorous user-centered design to create an easy-to-use and meaningful interface for patients to view test results. This would allow patients to focus on making sense of their test results rather than being frustrated by usability issues or leaving the portal to search for information online about their test results.
Study participants who used the more patient-centered versions of the prototype focused less on collecting information about each test result and more on what to do after receiving these test results. This partially illustrates the current disconnect between those who design these systems and those who use them.
Designers focus on solving the primary design issue of creating a system that simply enabled patients to review their laboratory test results. But users of the systems focused on a secondary issue, what do these results mean for my health? User-centered design can bridge that gap and ensure patient-centered clinical decision support meets patients’ needs.
What additional research is needed in patient-centered clinical decision support and how can others build on your research?
Giardina: Patient portal use continues to be low despite increased access to health information. Future research should expand on our findings to thoroughly explore the relationship between patients’ use of patient portals, the perceived usability of the portal interface, and patient’s understanding of the information presented in the portal.
Figuring out how patients want to use these systems and what questions these systems generate is the next step in this process. Answering these questions will require exploration of patients’ unmet information needs. Our research helps illustrate that after the first-order problem is solved, there are many additional layers of problems that must be addressed to serve patients better. Identifying and addressing these additional layers will require multi-disciplinary research teams committed to helping patients improve their understanding of their clinical data and what actions they can take to make themselves healthier.
Better Decisions Together is a new special section in AcademyHealth’s peer-reviewed, open access journal, eGEMs that highlights compelling research in patient-centered clinical decision support. The section accepts submissions on a rolling basis. Learn more about the section and consider submitting your manuscript today.