Constructing reliability. A socio-technical analysis of the different approaches to improve the reliability of health information on the Internet for lay users

(project 014-43-749)
 

Probleemstelling

This research focuses on the relation between the introduction of techniques developed to guarantee or enhance the reliability of information on health sites and the way these techniques reconfigure the patient. As health care web sites have increased in prevalence, so too have questions regarding how individuals and organizations might guarantee the reliability of these sites. Ethical codes, health portals and certificatory icons have been developed to guard health care information and to lead patients towards reliable sites. This research investigates the different consequences that operationalizations of 'reliability' may have.

Wetenschappelijk belang

Many authors have looked at the challenges that a novel medium such as Internet poses to the dissemination of information and knowledge, and in particular to the problem of assessing the worth or reliability of information. These studies focus on the differences between information from traditional sources like leaflets or newspapers, and information on Internet, noting especially the differences between the conditions and obstacles to trusting information both on-line and off. The socio-technical aspects of the tools developed to control medical information on the Internet and to facilitate users in identifying relevant sites, however, are hardly addressed in these studies. Likewise, how ‘reliabilities’ are constructed rather differently along with the different technologies, is equally not addressed. The project studies internet tools as artifacts containing particular scripts for both the organizations controlling the use of medical sites and patients who use those sites. We analyze the differences in these scripts by focusing on the construction or configuration of (1) different notions of reliability, (2) different (virtual) spaces and borders and (3) different users. Our analysis is based upon well-established studies in the field of Science and Technology Studies and a new but promising line of research about Human Centered Design and Value Sensitive Design.

Maatschappelijk belang

Medical sites on the Internet are believed to have a great impact on the empowerment of patients. This crucially depends upon the reliability of information on the web. Many initiatives are taken to enhance the quality of information on the internet, to protect users from 'poor' or 'dangerous' information, and/or to guide users to 'good' information. These initiatives take different routes: some drawing upon ethical codes for health information web sites, some issuing certificatory icons, and some build their own health portals which are then supposed to provide a 'protected environment' in which the consumer can be sure to find reliable – and hopefully appropriate - information.

Onderzoeksvragen en methode

This research primarily focuses on the relation between the introduction of techniques developed to guarantee or enhance the reliability of information on health sites and the way these techniques reconfigure the patient. The precise research questions are:

1. Which concepts of reliability are ascribed in the technologies developed to control the medical information on the Internet and to facilitate users in identifying relevant sites?
2. Which borders are constructed to separate sites that are marked as reliable from sites marked as non-reliable? What virtual spaces are thereby formed?
3. How do technologies re-constitute, configure or construct the user?

The study is a multiple case study and selects initiatives that want to guarantee the reliability of medical information on the Internet. We start every case study with a literature review about each of these initiatives in scientific journals. The next step is a series of site analyses. We also interview the developers of the systems about their perspectives on both reliability of medical information on the Internet and on their (potential) users, and about the way the different initiatives came into being. Besides this site approach, we focus on users. We study how users search sites and how they use portals and/or interpret icons. In addition to this manifest behavior, we interview users using semi-structured topic lists. Users are selected both in the United States and in the Netherlands.
During the research, we also visit the institutions to study their archives and to perform additional interviews. We want to know how the techniques have developed in time, and which decisions or problems have been important for the development. Also during the research, we will update the literature and track possible transformations in the notions of reliability, the assumptions about the users and discussions about the possibilities to create a safe space on internet. At the same time we analyse the home web sites of the selected internet techniques, like was done in an earlier phase of the research. This time we will focus our analysis on how their warnings, guidelines and disclaimers for the users have changed. For the same reason we will also visit the ‘approved’ web sites, selected earlier, for a second time. We want to check whether these sites are still labelled as reliable sites and whether these sites have changed. Moreover we want to understand how these changes is linked to transformations in respectively (1) the notions of reliability, (2) the configured users and (3) the construction of safe spaces.

Onderzoekers

Prof. dr. M. Berg, S. Adams MA and dr. A de Bont, Netherlands Institute for Health Science; Erasmus University Rotterdam.

Resultaten

Het onderzoek heeft onder meer geresulteerd in het proefschrift ‘Under Construction; reviewing and producing information reliablity on the web’. Van het proefschrift zijn een Nederlandstal ige samenvatting en een summary in English te downloaden.