Project Overview
Role: user researcher, strategist, designer
Methods: survey, interviews, prototyping
Deliverables: internal report, public presentations
Tools: sketch
Sponsor: AHRQ (Agency for Healthcare Research and Quality)
How can we motivate hospitalized patients to speak up about their concerns?
Patients in the hospital don’t always speak up about their concerns, even when there is a risk of medical errors and their health could be impacted. Getting them to speak up can improve patient safety by preventing medical errors.
Most of the interventions in this space are directed at clinicians: getting clinicians to speak up to other clinicians about protocol violations. But there isn’t much knowledge about how to help patients speak up to clinicians. My job was to figure out what kinds of design strategies we should pursue.
I decided to approach this as a behavior change problem, and ground my approach in both scientific literature and user studies.
Research Goals
I needed to understand:
What kinds of interventions does behavioral science tell us to make?
What kinds of design approaches can we take to use that behavioral science, and how do we know they are accurately representing the science (“theoretical fidelity”)?
Which of these approaches are most likely to work with patients?
The process
Designing theory-based prototypes: First I turned to behavioral science literature, and found the Integrated Behavioral Model. This model names several constructs that contribute to behavior change — things like how confident someone feels in their ability to speak up (self-efficacy), whether they feel they can get opportunities to speak up (perceived control), whether they think other patients speak up (descriptive norms), and others. I designed several prototypes that illustrated different design strategies for each motivational construct in the model.
Validating the prototypes: To validate the theoretical fidelity of the prototypes, I conducted a survey asking experts to map the prototypes to the right construct.
Unexpected challenge: getting validation was harder than I expected. I did some additional interviews with experts to make sure my validation method was working as it should, and did two rounds of prototyping and survey validation.
Exploring multiple design strategies for each motivational construct yields more insights
These cards show two very different strategies for the same motivational construct of “descriptive norms”. Both illustrate a way to normalize speaking up for patients. But boy did they provoke different reactions!
Prototype studies with patients and caregivers in the hospital: I took the prototypes with me and interviewed patients and caregivers while they were in the hospital about their experiences and their interpretations of the validated prototypes. Patients are diverse, and so was my participant pool: I recruited from adult and pediatric hospitals, including patients with a wide variety of conditions, as well as family caregivers helping the patient. In total I interviewed 28 participants.
Analysis and reporting: I discussed emergent themes with stakeholders as I went, modifying the interview protocol slightly to push on important themes. I conducted a rigorous thematic analysis in atlas.TI and reported my findings in internal presentations and reports as well as in a presentation at the prestigious international conference of CHI 2020.
Key Findings
There are MANY unexplored opportunities to encourage patients to speak up about their care. All of my prototypes were both novel and well-received by patients.
Normalizing speaking up and helping patients feel more confident in doing so can both be achieved successfully by in-hospital peer support systems — in other words, tools for patients to share stories and tips with each other. (Don’t worry, other work that I collaborated on explores how to do this well, without creating misinformation or antagonism towards clinicians). This approach may be more effective than other approaches.
Creating shared agendas can help patients create opportunities to speak up, but patients need to be confident that their interruptions and additions are welcome to clinicians. Otherwise, patients worry about being rude.
Theoretical fidelity is a lot harder to achieve than you think.
What was my impact?
I identified new opportunities for encouraging patients to speak up to promote patient safety.
I identified top-performing intervention strategies that would be highest priority to develop and test.
I identified issues with establishing theoretical fidelity of interventions — a complex problem for science!
Acknowledgments
This work could not have gone forward without support from our funders (thank you AHRQ!) and without the collaboration of my excellent colleagues: Wanda Pratt, Shefali Haldar, Ari Pollack, and other members of the Patients as Safeguards research team. Thank you for your support!