Designing a Patient Journal
Patients Will Actually Keep
Patient Centered Tools: Adaptive Translational Science in Action
Patient-centered tools built from the ground up improve both engagement and data retention. This project demonstrates how my approach to design produces practical solutions for complex, real-world conditions.
The University of California, San Francisco, Vaccination Is Prevention (VIP) Study faced a serious challenge:
the Memory Aid meant to track and monitor potential symptoms post dose administration consisted of several loose sheets and small tools that would be easily lost by participants.
These materials were appropriately designed for the general population and previous recruitment plan. When recruitment focus shifted toward populations actively at risk for HCV, we needed a different approach, so we adapted. Before the VIP Study launched, we worked proactively with the sponsor, deciding together that the best path forward involved redesigning the journal from the ground up into a format patients could realistically keep and use.
FIGURE 1 — Loose patient journal before transformation → tap to zoom
Design decisions had to deliver durable function reliably in real-world conditions involving the uncertain realities experienced by marginally housed and homeless populations. This called for a tool that could integrate cleanly into high-entropy environments where study coordination, counseling, site logistics, and crisis response could occur simultaneously.
I and the other VIP Study research coordinators- many with roots in the local punk and zine community- came up with an intuitive solution: transform the patient journal into a pocket-sized zine format. Compact, engaging, and designed to be kept rather than easily lost or discarded. The zine needed to condense as many loose materials as possible into a single form factor patients could easily carry with them.
With prior design experience creating show fliers, and backed by earlier creative work for the yoU Find Out Study, I volunteered to lead the document redesign alongside my primary responsibilities as a clinical research coordinator. Every element had to earn its place within the compact 4 × 5.5 in (101.6 × 139.7 mm) format while preserving the patient journal’s clinical functionality.
The result was the VIP Memory Crutch! A portable patient journal integrating self-reporting tools, reminders, and study resources into one cohesive system. When the redesigned document received rapid approval from UCSF’s Committee on Human Research, we knew the concept had real potential.
The Memory Crutch proved so successful in San Francisco that staff running the VIP Study at Johns Hopkins University requested their own localized version for Baltimore, Maryland.
Both UCSF and Johns Hopkins versions are available to flip through at the bottom of this page. Or by clicking here.
The VIP Memory Crutch: designed to be kept
Sometimes the best solution is redesigning the entire document from the ground up. The VIP Memory Crutch demonstrates how patient-informed cultural competency can transform a routine data collection tool into one patients actually want to use.
The original patient journal consisted of several loose pages and small tools that were easy to misplace and difficult to manage. The Memory Crutch condenses those materials into a compact, portable zine format designed to remain accessible during the unpredictable realities of transient living conditions. Few patient journals designed for clinical trials have looked — or functioned — like this.
FIGURE 2 — The redesigned VIP Memory Crutch patient journal in action
Each page integrates study prompts, tools, and reminders into a compact format designed for everyday use.
System Architecture: How the VIP Memory Crutch Works
FIGURE 3 — Form
Maximum Utility
Bound in thick yellow cardstock for high visibility in low-light environments and durability during its 7-day deployment.
24-hour study line is included throughout the booklet in key areas with patient prompts to
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Report a fever
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Report adverse event onset
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Ask any questions! We want to answer your questions!
24-hour phone number optimized for usability:
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Easy to recall vanity number spelling HCV VAXX
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Easy to reference numerical format
Front cover includes:
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Number of dose (1of2 / 2of2)
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Subject ID
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24-hour contact number + patient prompts
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"Memory Crutch" illustration by Jason Storm
Back cover includes:
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Office address
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Days & hours of operation
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Integrated millimeter ruler for easy patient monitoring & tracking potential administration site reactions
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24-hour contact number + patient prompts
FIGURE 4 — Guidance
FIGURE 5 — Calibration
Getting Started
The VIP Memory Crutch begins with a clear “How to Use Me” section outlining study participation expectations in friendly, accessible language. Introduced during the initial visit and referenced & reviewed throughout the study duration, the booklet functions as an ongoing guide for participants.
Plain directive language replaces the clinical tone typical of research-related documentation. This design decision empowers participants across a wide range of educational backgrounds by clearly explaining what to record during after-visit experiences and how to record it accurately.
Tutorials for Accurate
Data Collection
Clear visual guides explain how to interpret disposable thermometers and accurately measure swelling or redness after each vaccination. Brief instructions supported by hand-drawn diagrams simplify complex clinical instructions into quick references patients can use without additional assistance between study visits.
These illustrations were rendered carefully to improve comprehension, consistency, and accuracy in patient-reported data.
FIGURE 6 — Logistics
Follow-Up Reminders & Transit Guidance
Follow-up appointment reminders and transit route information helped participants make it to their study visits. For many without reliable calendar access, the journal became a temporal anchor- a primary reference for tracking time and commitments between appointments.
To support reliable attendance, San Francisco public transit routes and rail stations were included throughout the booklet. These routes ran adjacent to the VIP Study clinic site and allowed participants to navigate easily from anywhere in the San Francisco Bay Area.
When the VIP Study expanded to Johns Hopkins University, the Memory Crutch was successfully localized for Baltimore’s transit system as well.
FIGURE 7 — Monitoring
Integrated Tools for Monitoring and Reporting
The Memory Crutch integrates practical tools directly into the design. Office hours and the study hotline are prominently displayed to ensure participants can quickly contact study staff if concerns arise.
A millimeter-accurate ruler printed along the back cover allows patients to measure and record swelling or redness at injection sites. This simple addition enables more consistent self-reporting between clinic visits.
FIGURE 8 — Transport
Branded Zipper Pouch
Each participant received a study-branded zipper pouch designed to keep the Memory Crutch, disposable thermometers, and supporting materials together between visits.
The pouch also included a reminder card for the next appointment, a keychain coin purse, and study-branded stickers. (Stickers are fun!) Participants given the choice between red or blue pens for recording Memory Crutch entries.
Providing a storage solution encouraged patients to keep the entire system together, making ongoing monitoring and reporting between study visits easy.
Explore The VIP Memory Crutch
Original: University of California, San Francisco study site
Iterative: Johns Hopkins University. Baltimore, Maryland
NOTE: This example retains print trim & bleed marks
PUBLICATIONS
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Randomized Trial of a Vaccine Regimen to Prevent Chronic HCV Infection. N Engl J Med. 2021 02 11; 384(6):541-549. Page K, Melia MT, Veenhuis RT, Winter M, Rousseau KE, Massaccesi G, Osburn WO, Forman M, Thomas E, Thornton K, Wagner K, Vassilev V, Lin L, Lum PJ, Giudice LC, Stein E, Asher A, Chang S, Gorman R, Ghany MG, Liang TJ, Wierzbicki MR, Scarselli E, Nicosia A, Folgori A, Capone S, Cox AL. PMID: 33567193; PMCID: PMC8367093.
View in: PubMed View in: New England Journal of Medicine
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VIP Study: April 17th, 2018 CDC Grand Rounds, Working Together to Eliminate the Threat of Hepatitis B & C, Presented On YouTube and archived Slide Deck (Slide 51 of 72)
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"Memory Crutch" illustration by Jason Storm. All other formatting, illustrations, diagrams, and adaptation executed by GiGi Cavaleri
PORTFOLIO: FEATURED GLOBAL HEALTH PROJECTS
PORTFOLIO: FEATURED TYPOGRAPHY
