Involving Patients and the Public in E-Health Research

Involving Patients and the Public in E-Health Research

John Powell (Warwick Medical School, University of Warwick, UK) and Natalie Armstrong (Social Science Group, Department of Health Sciences, University of Leicester, UK)
Copyright: © 2009 |Pages: 12
DOI: 10.4018/978-1-60566-016-5.ch009
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Abstract

This chapter deals with the principles and practice of patient and public involvement in e-health research, and discusses some of the issues raised. In the first part of this chapter, we discuss the problems of defining an “e-health consumer,” and discuss why, how and when to involve consumers in e-health research. We also set out principles to guide effective consumer involvement, and the benefits that this can bring in the e-health arena. In the second part of this chapter, we describe how consumers were successfully involved, through a variety of methods, in the development and evaluation of an Internet-based intervention to aid diabetes self-management. Patient and public involvement in research is not the same as undertaking research on patients or the public. It is about understanding, incorporating and benefiting from the relevant consumer perspective, at various levels, throughout the stages of a project.
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Background

The terminology in this area can be problematic (Herxheimer & Goodare, 1999). Health consumers have been defined, in a rather all encompassing fashion, as “patients, past patients, prospective patients, long-term users of health services, relatives caring for patients or users, and people who speak for these primary consumers through local and national support and activist groups, community organizations such as community health councils, local and national coalitions of such groups, and international networks” (Williamson, 2001, p. 661). None of the alternative terms used to describe people who interact with health services and whose views we wish to capture (consumers, users, patients, clients, lay individuals, and so on) is value-free (Coulter, 2002). These terms are often specific to certain disciplines or locations. This chapter takes a pragmatic approach, discussing consumer involvement, but acknowledging that others may prefer alternate terms.

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Table of Contents
Foreword
Joseph Tan
Acknowledgment
E. Vance Wilson
Chapter 1
Juanita Dawson, Bengisu Tulu, Thomas A. Horan
This chapter provides a conceptual foundation by exploring the existing literature on traditional healthcare, patient-centered healthcare, and the... Sample PDF
Towards Patient-Centered Care: The Role of E-Health in Enabling Patient Access to Health Information
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Chapter 2
Alejandro Mauro
This chapter introduces a series of techniques and tools useful for developing patient-centered e-health. As information technology (IT) is... Sample PDF
Patient-Centered E-Health Design
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Chapter 3
Jan-Are K. Johnsen
In this chapter, we look at some fundamental aspects of communicating about ourselves and our health through technology. In particular, we examine... Sample PDF
Connecting with Ourselves and Others Online: Psychological Aspects of Online Health Communication
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Chapter 4
Ebrahim Randeree
An increasing focus on e-health and a governmental push to improve healthcare quality while giving patients more control of their health data have... Sample PDF
Personal Health Records: Patients in Control
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Chapter 5
Elaine A. Blechman
Newly disabled workers are often unemployed, uninsured, and indigent. They are in desperate need of Social Security OASDI monthly benefits, and the... Sample PDF
Disability Determinations and Personal Health Records
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Chapter 6
E-Health Marketing  (pages 70-80)
Muhammad F. Walji, John A. Valenza, Jiajie Zhang
In this chapter, we review key concepts, using the marketing mix framework, to identify the needs of healthcare consumers, and the tools and... Sample PDF
E-Health Marketing
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Chapter 7
Olli P. Järvinen
This chapter introduces the privacy management framework as a means of studying patient-centered e-health. The chapter raises some important issues... Sample PDF
Privacy Management of Patient-Centered E-Health
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Chapter 8
Richard Klein
Patient-centered e-health (PCEH) offerings see the emergence of divergent, new third parties, through initiatives, including (a) medical content... Sample PDF
Trust in Patient-Centered E-Health
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Chapter 9
John Powell, Natalie Armstrong
This chapter deals with the principles and practice of patient and public involvement in e-health research, and discusses some of the issues raised.... Sample PDF
Involving Patients and the Public in E-Health Research
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Chapter 10
Stefano Forti, Barbara Purin, Claudio Eccher
This chapter presents a case study of using interaction design methods for exploring and testing usability and user experience of a Personal Health... Sample PDF
Using Interaction Design to Improve Usability of a PHR User Interface Based on Visual Elements
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Chapter 11
Jiao Ma
This chapter explores the use of Web sites to provide patients with understandable information about the quality and price of healthcare (healthcare... Sample PDF
Healthcare Quality and Cost Transparency Using Web-Based Tools
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Chapter 12
Ann L. Fruhling
This chapter is drawn from a comprehensive study that examined the effect Human-Computer Interaction usability factors had on rural residents’... Sample PDF
Perceptions of E-Health in Rural Communities
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Chapter 13
Elizabeth Cummings, Stephen Chau, Paul Turner
This chapter explores how in developing patient-centred e-health systems it is possible to accommodate heterogeneous characteristics of end-users... Sample PDF
Assessing a Patient-Centered E-Health Approach to Chronic Disease Self-Management
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Chapter 14
Michel J. Sassene
This chapter investigates asthmatics’ reasons for not adopting an e-health system for asthma selfmanagement. An understanding of these reasons is... Sample PDF
Incompatible Images: Asthmatics' Non-Use of an E-Health System for Asthma Self-Management
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Chapter 15
Linda M. Gallant, Cynthia Irizarry, Gloria M. Boone
An extended version of the technology acceptance model (TAM) is applied to study hospital Web sites, one specific area of e-health. In a review of... Sample PDF
Exploring the Technology Adoption Needs of Patients Using E-Health
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Chapter 16
E. Vance Wilson, Nancy K. Lankton
This chapter presents a new rational-objective (R-O) model of e-health use that accounts for effects of facilitating conditions as well as patients’... Sample PDF
Predicting Patients' Use of Provider-Delivered E-Health: The Role of Facilitating Conditions
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About the Contributors