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Exploring the Patient Experience with Patient-Reported Outcomes: A Qualitative, Multistakeholder Study
Shehzad K Niazi1, Alexandra J Greenberg-Worisek1, Jennifer Smith1
1From the Department of Psychiatry & Psychology, the Division of Health Care Delivery Research, and Strategic Alliances, Mayo Clinic, Jacksonville, Florida, the Department of Health Sciences Research, Innovation & Design, and the Department of Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, Minnesota.
Patients understand the need for patient-reported outcomes (PROs) but expect transparency and timely clinician action. Incorporating patient feedback in PRO tool design is crucial for effective implementation in healthcare.
Area of Science:
- Health Informatics
- Patient Experience Research
- Human-Computer Interaction
Background:
- Existing literature details barriers to patient-reported outcome (PRO) implementation.
- However, patient perspectives on PRO tools remain underreported, limiting a comprehensive understanding.
Purpose of the Study:
- To explore patient experiences with PRO tools.
- To examine patient perceptions, attitudes, and expectations regarding PRO data use.
Main Methods:
- Employed ethnographic, human-centered design for free-form interviews.
- Analyzed two case studies of existing PRO use in clinical settings.
- Conducted unstructured thematic analysis of interview notes.
Main Results:
- Patients generally understand the necessity of PRO collection for research and clinical purposes.
- Patients anticipate prompt clinical action based on PRO results.
- Key themes identified include the need for transparency, individualization, timely responses, and preference for brief PROs.
Conclusions:
- Patient-reported outcome assessments should be designed with patients as end-users.
- Transparency in data collection purpose is vital for patient adoption.
- Minimizing patient burden by collecting only necessary data enhances participation.
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