DESIGN STRATEGY
Only 50-60% of patients actively use the EHR portal capabilities provided to them.
Improving lupus nephritis patient and provider outcomes through EHR
Year: 2023-2024
Duration: 185 hours spanning 9 months
Team: Team of 7 (Trudy Watt, Dr. Sancia Ferguson, Dr. Dhivani Garg, Kathleen Lonergan Erickson, Coe Douglas, Zainab Hameed, Alesia Burton)
Empowering patients AND providers to optimize care and communication through enhanced awareness, education, and collaborative engagement through improved EHR.
Project Introduction
This project emerged based on interest from the Division of Rheumatology, Department of Medicine, UW Madison expressng a desire to enhance outcomes for lupus nephritis patients and their healthcare providers, and an interest in doing so through an improved electronic health record (EHR) experience. This project aimed to 1) explore and identify possibilities as well as 2) teach how design thinking can benefit projects like this.
Recognizing that lupus nephritis is both highly specific and typically more severe than other conditions, our overarching goal was to develop actionable insights that could improve its management. These insights are also intended to benefit the treatment of similar health conditions.
My Role: I filled the role of Team Lead within the MD+I team, responsible for internal project management and participation in all other areas regarding research, strategy, and design. Additionally, I provided general project support when interacting with external partners, and prepared most materials and final report.
Methods: listening sessions, observational research, affinity mapping
Links: Findings Report | Synthesis | Emerging Ideas
The Problem
Lupus nephritis is a chronic autoimmune disease that affects approximately 100,000 individuals globally, bringing with it significant management challenges.
Lupus nephritis is a severe complication of systemic lupus erythematosus (SLE), affecting kidney function through inflammation and immune system attacks. Symptoms can vary widely and often include fatigue, swelling in the legs and ankles, changes in urine color and output, high blood pressure, and the presence of blood or protein in the urine. Management typically involves immunosuppressants, antimalarials, and blood pressure medications, along with regular monitoring through blood tests, urinalysis, and imaging studies.
Doctor visits generally occur every 1 to 3 months after diagnosis, with frequency decreasing to every 3 to 6 months for stable patients, although flare-ups may necessitate more frequent appointments. However, patients also need to regularly visit other related specialists, get regular blood testing, and are constantly filling prescriptions. The maintance of lupus nephritis is much more than that of other medical conditions.
As patients often struggle to understand their condition, improving electronic health record (EHR) systems can enhance education, streamline communication, and track key health metrics, ultimately leading to better patient care and outcomes.
Patients often struggle to comprehend their condition. While the use of EHR could theoretically help, providers in the Division of Rheumatology, Department of Medicine, UW Madison struggled to understand why current EHR functionality wasn't more effective.
Understanding this is crucial for determining how to further improve EHRs and other tools and services and truly essential for enhancing patient care outcomes.
The Solution & Output
In this instance, the final output was less "solution-based" and more "possibility-oriented."
Final delivery was centered around a single document: a findings report designed to illuminate opportunities for improving EHR interactions, thereby enhancing care and outcomes for both patients and providers. This report documents our research, translates to insights and offers guidance for future initiatives aimed at improving EHR usability.
By tackling the barriers to effective communication and management associated with lupus nephritis, we hope to contribute to the overall efficiency of EHR systems in healthcare. Our efforts have set the stage for future work, emphasizing the importance of overcoming systemic barriers and enhancing collaboration for improved patient care outcomes.
Through our initial groundwork, we aim to inspire further research and innovation that can positively impact patient management not just for lupus nephritis but across a range of chronic health issues.
The Process
Initially, we planned to conduct field research and focus groups with patients to gather insights directly. However, upon encountering the time-consuming nature of obtaining necessary approvals under HIPAA regulations and institutional review board (IRB) constraints, we pivoted our approach.
Instead, we opted for listening sessions as our primary research method. We engaged with various members of the care team, including physicians, nurses, and department leadership, to map out their roles and interactions with patients. The sessions were structured yet flexible, facilitating open discussions and behavioral observations. Our team divided responsibilities to streamline the process, ensuring effective note-taking and engagement.
In total, we executed four structured listening sessions with healthcare providers and one with an advisory board of eight lupus nephritis patients. Data collected from these sessions were synthesized and analyzed to reveal emerging themes and insights that can guide future projects.
After gathering information through listening sessions and some additional research, we took time to distill what we hear, map things, re-map things, synthesize some more, and then consolidate our findings for handover.
