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The issues and trends in healthcare delivery are constantly changing. The COVID-19 pandemic is one recent issue that wreaked havoc on healthcare systems, causing a shortage of healthcare workers, high demand for medicines and supplies, and increased medical expenditure due to a lack of insurance. Other issues include rising healthcare costs and care fragmentation.
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Biobank for Translational Medicine: Standard Operating Procedures for Optimal Sample Management
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Building a Decentralized Biobanking App for Research Transparency and Patient Engagement: Participatory Design Study.

Ananya Dewan1, M Eifler2, Amelia Hood3

  • 1Johns Hopkins University School of Medicine, Baltimore, MD, United States.

JMIR Human Factors
|March 7, 2025
PubMed
Summary
This summary is machine-generated.

Patients want to track their biospecimens and learn about research outcomes. A new mobile app, "de-bi," uses participatory design to engage patients in biobanking and biomedical research, improving transparency.

Keywords:
applicationbiobankingdigital healthdigital interventiondonationmHealthmobile healthparticipatory designpatient educationpatient-derived biospecimensplain language communicationsresearch transparencysmartphone

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Area of Science:

  • Biomedical research
  • Biobanking
  • Patient engagement

Background:

  • Patient-derived biospecimens are crucial for research.
  • Patients currently lack transparency regarding the use of their donated samples.
  • Engaging patients requires clear communication about research activities.

Purpose of the Study:

  • To develop a decentralized biobanking mobile application ('de-bi') using participatory design.
  • To enable patients to learn about biobanking, track their specimens, and engage with research.
  • To create patient-friendly interfaces for accessing institutional biobank data, initially for breast cancer research.

Main Methods:

  • Phase 1: Designed app screens, conducted surveys (n=94) and interviews to gauge patient interests.
  • Phase 1: Held participatory design workshops (approx. 50 participants) and co-design workshops (n=15) for feedback on approach and screen designs.
  • Phase 2: Refined UI, developed a functional prototype, and conducted usability testing through workshops (n=25) and cognitive walkthroughs (n=13).

Main Results:

  • 75% of participants were interested in research outcomes, and 49% in connecting with others.
  • 78% desired patient-friendly scientific summaries; co-design revealed terminology confusion but appreciation for specimen visibility (47%) and connection (80%).
  • App information was valuable; however, onboarding (44%) and biospecimen tracking (23% confusion) required refinement based on feedback.

Conclusions:

  • A patient-facing app displaying biobanked specimen information enhances transparency and engagement in research.
  • Co-design with patients confirmed interest in learning about biospecimens and research, improving data presentation and app usability.
  • The developed app is ready for a pilot study, demonstrating the value of patient-centered design in biobanking.