Journal
JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION
Volume 23, Issue 1, Pages 60-73Publisher
OXFORD UNIV PRESS
DOI: 10.1093/jamia/ocv094
Keywords
community-based participatory research; research design; patient empowerment; mHealth; patient-centered care
Categories
Funding
- National Library of Medicine of the National Institutes of Health (NIH) [5K22LM011382]
- Agency for Healthcare Research and Quality [R01HS019853, R01HS022961]
- NIH [UL1TR00040]
- National Science Foundation [IIS-0846024]
- Ontario HIV Treatment Network
- Canadian Foundation for AIDS Research
- Prevention Research Center of Michigan [1-U48-DP-001901]
- Centers for Disease Control and Prevention
- National Network of Libraries of Medicine
- Direct For Computer & Info Scie & Enginr [0846024] Funding Source: National Science Foundation
- AGENCY FOR HEALTHCARE RESEARCH AND QUALITY [R01HS019853, R01HS022961] Funding Source: NIH RePORTER
- NATIONAL CENTER FOR ADVANCING TRANSLATIONAL SCIENCES [UL1TR000040] Funding Source: NIH RePORTER
- NATIONAL CENTER FOR CHRONIC DISEASE PREV AND HEALTH PROMO [U48DP001901] Funding Source: NIH RePORTER
- NATIONAL LIBRARY OF MEDICINE [K22LM011382] Funding Source: NIH RePORTER
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Objective We compare 5 health informatics research projects that applied community-based participatory research (CBPR) approaches with the goal of extending existing CBPR principles to address issues specific to health informatics research. Materials and methods We conducted a cross-case analysis of 5 diverse case studies with 1 common element: integration of CBPR approaches into health informatics research. After reviewing publications and other case-related materials, all coauthors engaged in collaborative discussions focused on CBPR. Researchers mapped each case to an existing CBPR framework, examined each case individually for success factors and barriers, and identified common patterns across cases. Results Benefits of applying CBPR approaches to health informatics research across the cases included the following: developing more relevant research with wider impact, greater engagement with diverse populations, improved internal validity, more rapid translation of research into action, and the development of people. Challenges of applying CBPR to health informatics research included requirements to develop strong, sustainable academic-community partnerships and mismatches related to cultural and temporal factors. Several technology-related challenges, including needs to define ownership of technology outputs and to build technical capacity with community partners, also emerged from our analysis. Finally, we created several principles that extended an existing CBPR framework to specifically address health informatics research requirements. Conclusions Our cross-case analysis yielded valuable insights regarding CBPR implementation in health informatics research and identified valuable lessons useful for future CBPR-based research. The benefits of applying CBPR approaches can be significant, particularly in engaging populations that are typically underserved by health care and in designing patient-facing technology.
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