Personal Health Informatics:
Patient Participation in Precision Health


(Springer Nature, November 2022)



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This volume, edited by Pei-Yun Sabrina Hsueh, Thomas Wetter, and Xinxin (Katie) Zhu, has been published by Springer Nature in their Cognitive Informatics (CI) book series. The book is intended to serve as an introductory book, which offers a snapshot of the emerging field of consumer health, supported by the methodological, practical, and ethical perspectives of researchers and practitioners. The new term “Personal Health Informatics” is coined to cover a broader definition of consumer health. Individuals are not just the consumers of health services anymore; they are active participants, researchers, and designers in the healthcare ecosystem. Instead of designing health services “for” patients, we are entering a new era wherein health services are designed “with” patients. The rise of personal health informatics is also in line with the accumulation of “real-world data” that power up the generation of “real-world evidence” and a wide range of AI applications down the stream. The volume will also be an excellent reader for students in all clinical disciplines as well as in biomedical and health informatics to learn from the common challenges and obstacles revealed in the case studies of this emerging field. In addition to being a research reader, this book will also provide pragmatic insights for practitioners in designing, implementing, and evaluating personal health informatics in healthcare settings.

Personal Health Informatics: Patient Participation in Precision Health


Editors:

Pei-Yun Sabrina Hsueh PhD, FAMIA, Pfizer

Xinxin (Katie) Zhu, MD, PhD, FAMIA, FIAHSI, Yale University

Thomas Wetter, PhD, Heidelberg University Hospital

Table of Contents

Front Matter

Dedication

Foreword by Enrico Coeira

Preface by Pei-Yun Sabrina Hsueh, Thomas Wetter, Xinxin (Katie) Zhu

Acknowledgements for Contributors and Reviewers

I. The State-of-the-Art Novel Care Delivery Models

  1. E-enabled Patient-Provider Communication in Context

Craig Kuziemsky, Christian Nøhr, José F. Florez-Arango, Vimla L. Patel

  1. Value-Based Care: Example of a Direct Primary Care Model

           Jane Snowdon, Sasha Ballen, George Kim, Ching-Hua Chen, Sugato Bagchi, Yoonyoung Park, Issa Sylla, Judy George, Bedda Rosario, Marion Ball

  1. Safer Homes for Personal Health and Safety

George Demiris, Therese S. Richmond, Nancy A. Hodgson

  1. Health App By Prescription: The German Nation-Wide Model

           Monika Pobiruchin and Veronika Strotbaum

  1. Patient Portal for Critical Response during Pandemic: A case of COVID-19 in Taiwan

           Siang Hao Lee, Yi-Ru Chiu and Po-Lun Chang

       

  1. The Integration of Patient-Generated Health Data to EHRs

Sarah Rossetti Collins, Victoria Tiase

II. Methods for Translating Biomedical Research and Real World Evidence into Patient-Centric Precision Health Application

  1. Role of Health App in the Design and Analysis of N-of-1 Trials

Thevaa Chandereng, Ziwei Liao, Stefani D’Angelo, Mark Butler, Karina Davidson, Ying Kuen Cheung

  1. Early Detection of Mental Decline via Mobile and Home Sensors

Holly Jimison, Maciej Kos, and Misha Pavel

  1. The Role of Patient-Generated Data in Personalized Oncology Care and Research: Opportunities and Challenges for a Real-world Implementation

Francisco J. Núñez-Benjumea, Sergio Cervera-Torres; José Luis López-Guerra, Zhongxing Liao, José Pagán, Francisco Zambrana

  1. Semantic Technologies for Enabling Clinically Relevant Personal Health Applications

Jim Hendler, Deborah McGuinness, Oshani Seneviratne, Mohamed Zaki, Jonathan Harris, Nidhi Rastogi, Daniel Gruen, Ching-Hua Chen

  1. Privacy Predictive Models for Homecare Patient Sensing

Luyi Sun, Bian Yang, Egil Utheim, Hao Luo

  1. Detect Personal Health Mentions from Social Media Using Supervised Machine Learning

Zhijun Yin, Daniel Fabbri, S Trent Rosenbloom, Bradley Malin

  1. Common Data Models (CDMs): The basic building blocks for fostering public/population health research using Distributed Data Networks (DDNs)

Pradeep Podila

III. Methods for Patient-centric Design

  1. Opportunities and Challenges for Person-Centered Design for Citizen Science

Robin Austin and Cecilia X. Wang

  1. Challenges in Leveraging Library & Information Science to Discover Consumer Health Informatics Research

Christie L. Martin, Elizabeth V. Weinfurter, Kristine M. Alpi, and Scott Sittig

  1. The Ecosystem of Patient-Centered Research and Information System Design: Opportunities and Challenges

Pei-Yun Sabrina Hsueh

  1. Personalizing Research: Involving, Inviting, and Engaging Patient Researchers

Dana Lewis

  1. User-centered development and evaluation of patient-facing visualizations of health information

Ruth Creber and Meghan Reading Turchioe

  1. Social Determinants of Health during the COVID-19 pandemic in the US: Precision through context

           Jessica Islam, Juan Espinoza, Marlene Camacho-Rivera, Denise C. Vidot, Charisse Madlock-Brown

IV. Ethics, Bias and Fairness

  1. Personal Health Informatics Services and the different types of values they create

Thomas Wetter

  1. Electronic Health Records: Ethical Considerations Touching Health Informatics Professionals

Eike Henner Kluge

  1. Healthcare Organizations as Health Data Fiduciaries: An International Analysis

Paul deMuro and Henry Norwood

  1. Ethical, Legal, and Social Issues Pertaining to Virtual and Digital Representations for Patients

Bonnie Kaplan

Glossary

Name Index

Subject Index