Patient and public involvement in mobile health-based research for hay fever: a qualitative study of patient and public involvement implementation process

被引：4

作者：

Fujio K. ^{[1
,2
]}

Inomata T. ^{[1
,2
,3
]}

Fujisawa K. ^{[4
]}

Sung J. ^{[1
]}

Nakamura M. ^{[1
,2
,5
]}

Iwagami M. ^{[6
]}

Muto K. ^{[4
]}

Ebihara N. ^{[7
]}

Nakamura M. ^{[1
,2
,5
]}

Okano M. ^{[9
]}

Akasaki Y. ^{[1
,2
]}

Okumura Y. ^{[1
,2
]}

Ide T. ^{[8
]}

Nojiri S. ^{[10
]}

Nagao M. ^{[10
,11
,12
]}

Fujimoto K. ^{[1
]}

Hirosawa K. ^{[1
,2
]}

Murakami A. ^{[1
,2
]}

机构：

[1] Department of Ophthalmology, Juntendo University Graduate School of Medicine, 2-1-1 Hongo, Tokyo

[2] Department of Digital Medicine, Juntendo University Graduate School of Medicine, Tokyo

[3] Department of Hospital Administration, Juntendo University Graduate School of Medicine, Tokyo

[4] Department of Public Policy, The Institute of Medical Science, The University of Tokyo, Tokyo

[5] Precision Health, Department of Bioengineering, Graduate School of Engineering, The University of Tokyo, Tokyo

[6] Department of Health Services Research, Faculty of Medicine, University of Tsukuba, Ibaraki, Tsukuba

[7] Department of Ophthalmology, Urayasu Hospital, Juntendo University, Chiba

[8] Department of Otorhinolaryngology, Head and Neck Surgery, Juntendo University Faculty of Medicine, Tokyo

[9] Department of Otorhinolaryngology, International University of Health and Welfare, Narita

[10] Medical Technology Innovation Center, Juntendo University, Tokyo

[11] Department of Orthopedic Surgery, Juntendo University Graduate School of Medicine, Tokyo

[12] School of Health and Sports Science, Juntendo University, Chiba

来源：

Research Involvement and Engagement | / 8卷 / 1期

关键词：

Allergic conjunctivitis; Allergic rhinitis; Hay fever; Mobile health; Patient and public engagement; Patient and public involvement; Pollinosis; Public engagement; ResearchKit; Smartphone application;

D O I：

10.1186/s40900-022-00382-6

中图分类号：

学科分类号：

摘要：

Background: Smartphones are being increasingly used for research owing to their multifunctionality and flexibility, and crowdsourced research using smartphone applications (apps) is effective in the early detection and management of chronic diseases. We developed the AllerSearch app to gather real-world data on individual subjective symptoms and lifestyle factors related to hay fever. This study established a foundation for interactive research by adopting novel, diverse perspectives accrued through implementing the principles of patient and public involvement (PPI) in the development of our app. Methods: Patients and members of the public with a history or family history of hay fever were recruited from November 2019 to December 2021 through a dedicated website, social networking services, and web briefing according to the PPI Guidebook 2019 by the Japan Agency for Medical Research and Development. Nine opinion exchange meetings were held from February 2020 to December 2021 to collect opinions and suggestions for updating the app. After each meeting, interactive evaluations from PPI contributors and researchers were collected. The compiled suggestions were then incorporated into the app, establishing an active feedback loop fed by the consistently interactive infrastructure. Results: Four PPI contributors (one man and three women) were recruited, and 93 items were added/changed in the in-app survey questionnaire in accordance with discussions from the exchange meetings. The exchange meetings emphasized an atmosphere and opportunity for participants to speak up, ensuring frequent opportunities for them to contribute to the research. In March 2020, a public website was created to display real-time outcomes of the number of participants and users’ hay-fever-preventative behaviors. In August 2020, a new PPI-implemented AllerSearch app was released. Conclusions: This study marks the first research on clinical smartphone apps for hay fever in Japan that implements PPI throughout its timeline from research and development to the publication of research results. Taking advantage of the distinct perspectives offered by PPI contributors, a step was taken toward actualizing a foundation for an interactive research environment. These results should promote future PPI research and foster the establishment of a social construct that enables PPI efforts in various fields. © 2022, The Author(s).

引用

共 49 条

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