Other Titles

International Nurse Researcher Hall of Fame Recipient Presentation

Other Titles

Special Session/Plenary Session

Abstract

This presentation describes a novel approach for embedding the organic patient voice into intervention design through analysis of patient-generated data. By leveraging social media and other naturally occurring narratives, this method captures patient identified concerns authentically, revealing priorities often missed by traditional approaches. Examples from epilepsy and other chronic conditions demonstrate how this work informs scalable, patient driven self management tools and outcomes.

Notes

References:

Antisdel, J., Miller, W.R., & Groves, D. (2025). Data mining trauma: An AI-assisted qualitative study of cyber victimization on Reddit. JMIR Infodemiology, 5.

Carpenter, J.S., Groves, D., Chen, C.X., Otte, J.L., & Miller, W.R. (2017). Menopause and big data: Word adjacency graph modeling of menopause-related ChaCha® data. Menopause, epub ahead of print.

Knopf, A., Groves, D., Miller, W.R., Fortenberry, F., & Priest, C. (2016). Adolescents’ Anonymous Sexual Health Queries to the ChaCha Question and Answer Service. Journal of Adolescent Health, 58(2), S100.

Malloy, C., Mravec, M., & Miller, W.R. (2023). Exploring relatedness as sought by adolescents and young adults in an online Instagram inflammatory bowel disease support community. Gastroenterology, 164(4), S86-87.

Miller, W.R., Gesselman, A.N., Garcia, J.R., Groves, D., & Buelow, J.M. (2017). Epilepsy-related romantic and sexual relationship problems and concerns: Indications from internet message boards. Epilepsy & Behavior, 74, 149-153.

Min, A., Wang, X., Correia, R.B., Rozum, J., Miller, W.R., & Rocha, L.M. (2024). Refinement of an epilepsy dictionary through human annotation of health-related posts on Instagram. arXiv preprint arXiv:2405.08784.

Priest, C., Knopf, A., Groves, D., Carpenter, J., Furrey, C., Krishna, A., Miller, W.R., Otte, J., Palakal, M., Wiehe, S., & Wilson, J. (2016). Finding the patient’s voice using Big Data: Analysis of Users’ Health Related Concerns in the ChaCha Question and Answer Service (2009- 2012). Journal of Medical Internet Research, 18(3).

Wood, I., Correia, R., Miller, W.R., & Rocha, L. (2022). Small Cohort of Epilepsy Patients Showed Increased Activity on Facebook before Sudden Unexpected Death. Epilepsy & Behavior. E-pub ahead of print.

Description

Sigma celebrates 2026 International Nurse Researcher Hall of Fame Inductees

Twenty-six nurse researchers join the ranks of the profession's most transformative voices

This year marks the 17th presentation of this prestigious honor. The 2026 inductees join more than 300 of the most distinguished nurse researchers globally, whose work has left a lasting mark on the science, practice, and policy of nursing for generations to come.

This slide deck represents the presentation of a current inductee. 

Author Details

Wendy R. Trueblood Miller, PhD, RN, CNS, CCRN, FAAN, FAES

Dr. Trueblood Miller is a Professor, the Sally Reahard Endowed Chair, and Director of the Center for Enhancing Quality of Life in Chronic Illness at the Indiana University School of Nursing. Her research focus is capturing the patient voice using large datasets to develop and test patient-centered interventions, particularly in epilepsy.

Sigma Membership

Alpha

Lead Author Affiliation

Indiana University, Indianapolis, Indiana, USA

Type

Presentation

Format Type

Text-based Document

Study Design/Type

Expert Opinion (nationally/internationally recognized)

Research Approach

Other

Keywords:

Patient-Centered Care, Social Media, Information Resources, Information-Seeking Behavior, Big Data, Acquisition of Data, Quality of Life, Epilepsy

Conference Name

37th International Nursing Research Congress

Conference Host

Sigma Theta Tau International

Conference Location

Toronto, Ontario, Canada

Conference Year

2026

Rights Holder

All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record. All permission requests should be directed accordingly and not to the Sigma Repository. All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.

Review Type

Invited Presentation

Acquisition

Proxy-submission

Date of Issue

2026-10-05

Download
Click above link to access the slide deck.

Share

COinS
 

Going Organic: Capturing the Patient Voice to Inform Patient-Driven Interventions and Outcomes

Toronto, Ontario, Canada

This presentation describes a novel approach for embedding the organic patient voice into intervention design through analysis of patient-generated data. By leveraging social media and other naturally occurring narratives, this method captures patient identified concerns authentically, revealing priorities often missed by traditional approaches. Examples from epilepsy and other chronic conditions demonstrate how this work informs scalable, patient driven self management tools and outcomes.