It is often said that, in the face of an ever-changing world, infrastructure must remain flexible. Yet, what is meant by change remains glib and, consequently, so too do our studies on flexibility. In this paper, we develop three sensitizing concepts to investigate change to research infrastructure: 1) technoscientific: changes in research objects, scientific methods, and instruments; 2) sociotechnical: changes in social organization, coordination and, collaboration tools; and data sharing techniques; and 3) institutional: changes in funding and regulatory regimes. The majority of studies of "information infrastructure" have focused on the sociotechnical facet, and so we offer the two additional facets of change to help sensitize researchers to empirical instances of these encountered in the field, and to broaden the research agenda. To elaborate these concepts, we focus on a long-term research infrastructure that has been investigating HIV disease for nearly thirty years: The Multicenter AIDS Cohort Study (MACS). Over time, the MACS has faced tremendous changes in its science, collaboration and communication tools, its data and specimen repositories, its institutional environment, and the disease itself. Before we can begin to characterize flexibility, we must understand the nature of change research infrastructures face. We conclude by outlining a research agenda that will match forms of flexibility to the heterogeneity of changes an infrastructure may encounter.

Is it possible to prepare and plan for emergent and changing objects of research? Members of the Multicenter AIDS Cohort Study have been investigating AIDS for over 30 years, and in that time, the disease has been repeatedly transformed. Over the years and across many changes, members have continued to study HIV disease while in the process regenerating an adaptable research organization. The key to sustaining this technoscientific flexibility has been what we call the kernel of a research infrastructure: ongoing efforts to maintain the availability of resources and services that may be brought to bear in the investigation of new objects. In the case of the Multicenter AIDS Cohort Study, these resources are as follows: specimens and data, calibrated instruments, heterogeneous experts, and participating cohorts of gay and bisexual men. We track three ontological transformations, examining how members prepared for and responded to changes: the discovery of a novel retroviral agent (HIV), the ability to test for that agent, and the transition of the disease from fatal to chronic through pharmaceutical intervention. Respectively, we call the work, ‘technologies’, and techniques of adapting to these changes, ‘repurposing’, ‘elaborating’, and ‘extending the kernel’.

We explore the relationship between long-term scientific infrastructure and its changing objects of research. Specifically, we focus on the historical changes in HIV disease during the life of a longitudinal medical study investigating the disease for nearly thirty years. We ask, within the study of information infrastructure and research-based organizations, what are the things that inherently change, and how do such changes reverberate through the practice and organization of infrastructure? In applying the philosophical concept of historical ontology to cyberinfrastructure, we present the groundwork for a broader understanding of infrastructural sustainability within an environment inherently in flux.

BackgroundSearching online for health information is common among American adults. However, there have been few studies to investigate the online health-searching behaviors among men who have sex with men (MSM) with human immunodeficiency virus (HIV).ObjectiveTo estimate the prevalence of Internet use among HIV-seropositive MSM and compare their online behaviors with HIV-seronegative men with chronic disease(s).MethodsThis study was performed at the Baltimore/Washington, DC site of the Multicenter AIDS Cohort Study (MACS). A total of 200 MACS participants were asked to answer a self-administered questionnaire on a first-come basis during a semiannual study visit (from July to November 2011); 195 (97.5%) participants completed the survey. Multiple logistic regression models were used to investigate the factors influencing their online health-searching behaviors.ResultsThe median age of the 195 MSM participants was 57 years, 64.6% were white, 59.0% were employed, and 88.2% had Internet access at home and/or other locations. Of the 95 HIV-seropositive participants, 89.5% currently used highly active antiretroviral therapy (HAART) and 82.1% had Internet access. After adjusting for age and race/ethnicity, the HIV-seropositive participants were less likely to perform online searches for general disease-related information compared to the HIV-seronegative men with chronic disease(s) (OR 0.20, 95% CI 0.06-0.68, P=.01). There were no statistically significant associations with HIV status and searching for new medications/treatments (OR 0.55, 95% CI 0.19-1.55, P=.26) or support/advice from other patients (OR 0.52, 95% CI 0.18-1.53, P=.24). Increasing age by 5 years led to a decrease by 29% in the odds of online health-related searches for general information (OR 0.71, 95% CI 0.52-0.98, P=.03) and 26% for support/advice from other patients (OR 0.74, 95% CI 0.56-0.98, P=.03). A decrease of 25% for new medications/treatments was also seen, but was not statistically significant (OR 0.75, 95% CI 0.57-1.01, P=.06).ConclusionsThis study shows that HIV-seropositive MSM have similar online health-searching behaviors as HIV-seronegative men with chronic disease(s). Independent of HIV status, older MSM are less likely to perform online health-related searches.

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