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
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.
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.