Patient and Public Involvement in Research

Patient and public involvement in research focuses on a specific sample and sub-group of research participants, and is distinct from participatory medicine and e-patients. By placing the patient and public at the forefront of research, new perspectives are generated to assist with improving healthcare quality, clinical practice, and research.

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Years in this theme: All years 2025 2024 2023 2021 2020 2018

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Articles published in this theme: 21 (scroll down to load remaining articles)

2025

Value Propositions for Digital Shared Medication Plans to Boost Patient–Health Care Professional Partnerships: Co-Design Study

Benjamin Bugnon, Francesca Bosisio, Alain Kaufmann, Pascal Bonnabry, Antoine Geissbuhler, Christian von Plessen

J Particip Med 2025 (Jan 28); 17:e50828

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Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study

Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study

Christina L Duncan, Emily F Muther, Jennifer J Lindwall, Kristine Durkin, Elizabeth Ruvalcaba, Eliza Williamson, Corrine Ahrabi-Nejad, Evelyn Bord, Angela Green, Megan L Harrison, Deepika Polineni

J Particip Med 2025 (Jan 20); 17:e49941

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Urban-Suburban Differences in Public Perspectives on Digitalizing Pediatric Research: Cross-Sectional Survey Study

Urban-Suburban Differences in Public Perspectives on Digitalizing Pediatric Research: Cross-Sectional Survey Study

Heping Fang, Ruoling Xian, Juan Li, Yingcun Li, Enmei Liu, Yan Zhao, Yan Hu

J Med Internet Res 2025 (Jan 07); 27:e60324

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2024

A Practical Guide to Participatory Design Sessions for the Development of Information Visualizations: Tutorial

A Practical Guide to Participatory Design Sessions for the Development of Information Visualizations: Tutorial

Adriana Arcia, Samantha Stonbraker, Sabrina Mangal, Maichou Lor

J Particip Med 2024 (Dec 13); 16:e64508

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Unlocking the Potential for Implementation of Equitable, Digitally Enabled Citizen Science: Multidisciplinary Digital Health Perspective

Unlocking the Potential for Implementation of Equitable, Digitally Enabled Citizen Science: Multidisciplinary Digital Health Perspective

Lucio Naccarella, Jonathan Charles Rawstorn, Jaimon Kelly, Eleanor Quested, Stuart Jenkinson, Dominika Kwasnicka

J Med Internet Res 2024 (Dec 10); 26:e50491

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Self-Induced Mania Methods and Motivations Reported in Online Forums: Observational Qualitative Study

Self-Induced Mania Methods and Motivations Reported in Online Forums: Observational Qualitative Study

Emmanuelle CS Bostock, Adriana G Nevarez-Flores, Amanda L Neil, Halley M Pontes, Kenneth C Kirkby

J Particip Med 2024 (Dec 06); 16:e56970

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Assessing the Quality of an Online Democratic Deliberation on COVID-19 Pandemic Triage Protocols for Access to Critical Care in an Extreme Pandemic Context: Mixed Methods Study

Assessing the Quality of an Online Democratic Deliberation on COVID-19 Pandemic Triage Protocols for Access to Critical Care in an Extreme Pandemic Context: Mixed Methods Study

Claudia Lucrecia Calderon Ramirez, Yanick Farmer, James Downar, Andrea Frolic, Lucie Opatrny, Diane Poirier, Gina Bravo, Audrey L'Espérance, Nathalie Gaucher, Antoine Payot, Joseph Dahine, Peter Tanuseputro, Louis-Martin Rousseau, Vincent Dumez, Annie Descôteaux, Clara Dallaire, Karell Laporte, Marie-Eve Bouthillier

J Particip Med 2024 (Nov 11); 16:e54841

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Co-Designing a Digital App to Support Young People’s Patient and Public Involvement and Engagement (VoiceIn): Development and Usability Study

Co-Designing a Digital App to Support Young People’s Patient and Public Involvement and Engagement (VoiceIn): Development and Usability Study

Alison Branitsky, Penny Bee, Sandra Bucci, Karina Lovell, Simon Foster, Pauline Whelan

JMIR Hum Factors 2024 (Oct 24); 11:e53394

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Participant Motivators and Expectations in the MEL-SELF Randomized Clinical Trial of Patient-Led Surveillance for Recurrent Melanoma: Content Analysis of Survey Responses

Participant Motivators and Expectations in the MEL-SELF Randomized Clinical Trial of Patient-Led Surveillance for Recurrent Melanoma: Content Analysis of Survey Responses

Deonna Ackermann, Jolyn Hersch, Dana Jordan, Emily Clinton-Gray, Karen Bracken, Monika Janda, Robin Turner, Katy Bell

JMIR Dermatol 2024 (Oct 17); 7:e58136

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Recruitment in Appalachian, Rural and Older Adult Populations in an Artificial Intelligence World: Study Using Human-Mediated Follow-Up

Recruitment in Appalachian, Rural and Older Adult Populations in an Artificial Intelligence World: Study Using Human-Mediated Follow-Up

Tabitha Milliken, Donielle Beiler, Samantha Hoffman, Ashlee Olenginski, Vanessa Troiani

JMIR Form Res 2024 (Aug 22); 8:e38189

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Using Short-Form Videos to Get Clinical Trial Newcomers to Sign Up: Message-Testing Experiment

Using Short-Form Videos to Get Clinical Trial Newcomers to Sign Up: Message-Testing Experiment

Sisi Hu, Ciera E Kirkpatrick, Namyeon Lee, Yoorim Hong, Sungkyoung Lee, Amanda Hinnant

J Med Internet Res 2024 (Aug 15); 26:e49600

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Digital Mental Health for Schizophrenia and Other Severe Mental Illnesses: An International Consensus on Current Challenges and Potential Solutions

Digital Mental Health for Schizophrenia and Other Severe Mental Illnesses: An International Consensus on Current Challenges and Potential Solutions

Katharine A Smith, Amy Hardy, Anastasia Vinnikova, Charlotte Blease, Lea Milligan, Diego Hidalgo-Mazzei, Sinéad Lambe, Lisa Marzano, Peter J Uhlhaas, Edoardo G Ostinelli, Gerard Anmella, Caroline Zangani, Rosario Aronica, Bridget Dwyer, John Torous, Andrea Cipriani

JMIR Ment Health 2024 (May 08); 11:e57155

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Investigating Patient Satisfaction Through Web-Based Reviews of Norwegian Dentists: Quantitative Study Using the Meaning Extraction Method

Investigating Patient Satisfaction Through Web-Based Reviews of Norwegian Dentists: Quantitative Study Using the Meaning Extraction Method

Maria Larsen, Gro Eirin Holde, Jan-Are Kolset Johnsen

J Particip Med 2024 (May 03); 16:e49262

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Getting to Know Your Patient: Content Analysis of Patients’ Answers to a Questionnaire for Promoting Person-Centered Care

Getting to Know Your Patient: Content Analysis of Patients’ Answers to a Questionnaire for Promoting Person-Centered Care

Juno HK Bergers, Hester Wessels-Wynia, Tatjana Seute, Astrid Janssens, Johannes JM van Delden

J Particip Med 2024 (Mar 04); 16:e48573

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2023

An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach

An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach

Ariane Quintal, Isabelle Carreau, Annie-Danielle Grenier, Caroline Hébert, Christine Yergeau, Yves Berthiaume, Eric Racine

J Particip Med 2023 (Nov 23); 15:e46607

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2021

Best Practices for Virtual Engagement of Patient-Centered Outcomes Research Teams During and After the COVID-19 Pandemic: Qualitative Study

Best Practices for Virtual Engagement of Patient-Centered Outcomes Research Teams During and After the COVID-19 Pandemic: Qualitative Study

Erin K Thayer, Molly Pam, Morhaf Al Achkar, Laura Mentch, Georgia Brown, Traci M Kazmerski, Emily Godfrey

J Particip Med 2021 (Mar 11); 13(1):e24966

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Feasibility and Preliminary Effectiveness of a Peer-Developed and Virtually Delivered Community Mental Health Training Program (Emotional CPR): Pre-Post Study

Feasibility and Preliminary Effectiveness of a Peer-Developed and Virtually Delivered Community Mental Health Training Program (Emotional CPR): Pre-Post Study

Amanda L Myers, Caroline Collins-Pisano, Joelle C Ferron, Karen L Fortuna

J Particip Med 2021 (Mar 04); 13(1):e25867

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2020

Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 1): Development of a Decolonization Toolkit With Patient and Parent Advisors

Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 1): Development of a Decolonization Toolkit With Patient and Parent Advisors

Courtney M Moore, Sarah E Wiehe, Dustin O Lynch, Gina EM Claxton, Matthew P Landman, Aaron E Carroll, Paul I Musey

J Particip Med 2020 (May 20); 12(2):e14974

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Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel

Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel

Adam Bouras, Eduardo J Simoes, Suzanne Boren, Lanis Hicks, Iris Zachary, Christoph Buck, Satvinder Dhingra, Richard Ellis

J Particip Med 2020 (May 15); 12(2):e14062

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The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study

The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study

Sarah Prior, Andrea Miller, Steven Campbell, Karen Linegar, Gregory Peterson

J Particip Med 2020 (Feb 07); 12(1):e12336

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