A core topic of concern is how we should develop better principles to understand design practices. The latter surfaces when IA looks at other disciplines, like linguistics, design thinking, new media studies and architecture to develop the theoretical foundations that can back and/or inform its practice. Within the philosophy of information this need to understand general principles of (conceptual or informational) design arises in relation to the question of how we develop and adopt the right level of abstraction (what Luciano Floridi calls the logic of design). This suggests a two-way interaction between PI and IA. On the one hand, PI can become part of the theoretical background that informs Information Architecture as one of the disciplines from which it can borrow concepts and theories. The philosophy of information, on the other hand, can benefit from the rich practice of IA and the growing body of critical reflection on how, within a particular context, the access to online information is best designed.
Throughout the workshop, two themes emerged:
- The need for more integrated ways to reason about and describe (a) informational artefacts and infrastructures, (b) the design-processes that lead to their creation, and (c) the requirements to which they should conform. This presupposes a convergence between the things we build (informational artefacts) and the conceptual apparatus we rely on (the levels of abstraction we adopt), which surfaces in IA as well as in PI. At the same time, it also calls for novel frameworks and linguistic abstractions. This need to reframe the ways that we observe informational phenomena could be discerned in several contributions to the workshop. It surfaced in the more theoretically oriented contributions of Andrew Hinton, Jason Hobbs & Terence Fenn, Dan Klyn, and Andrea Resmini, that for instance questioned the role of language and place or described frameworks to direct our thinking about designs and problems within their broader context, but also played a role in the practical challenges described by Vicky Buser and Konstantin Weiss.
- The gap, and resulting need to negotiate, between human and computer-oriented conceptual frameworks that are used to describe and manipulate reality. Whereas this theme was explicitly brought up in Luke Church’s comparison of how end-user programming, machine-learning and interactive visualisation each address this problem, it quickly leads us back to some of the broader concerns in IA. It is, straightforwardly, an instance of how computer-oriented frameworks start to shape infrastructures that are means to be manipulated by humans (i.e. when technical requirements dictate the shape of the user-interface), but it indirectly also hints at the challenges associated with the design of cross-channel interactions and of understanding how information flows between different levels of abstraction.
A final concern that cuts across these two themes deserves to be mentioned as well, namely the need for a language for critique.
This workshop was organised by David Peter Simon, Luciano Floridi and Patrick Allo, and was part of the “Logics of Visualisation” project.
Online support groups are one of the major ways in which the Internet has fundamentally changed how people experience health and health care. They provide a platform for health discussions formerly restricted by time and place, enable individuals to connect with others in similar situations, and facilitate open, anonymous communication.
Previous studies have identified that individuals primarily obtain two kinds of support from online support groups: informational (for example, advice on treatments, medication, symptom relief, and diet) and emotional (for example, receiving encouragement, being told they are in others’ prayers, receiving “hugs”, or being told that they are not alone). However, existing research has been limited as it has often used hand-coded qualitative approaches to contrast both forms of support, thereby only examining relatively few posts (<1,000) for one or two conditions.
In contrast, our research employed a machine-learning approach suitable for uncovering patterns in “big data”. Using this method a computer (which initially has no knowledge of online support groups) is given examples of informational and emotional posts (2,000 examples in our study). It then “learns” what words are associated with each category (emotional: prayers, sorry, hugs, glad, thoughts, deal, welcome, thank, god, loved, strength, alone, support, wonderful, sending; informational: effects, started, weight, blood, eating, drink, dose, night, recently, taking, side, using, twice, meal). The computer then uses this knowledge to assess new posts, and decide whether they contain more emotional or informational support.
With this approach we were able to determine the emotional or informational content of 40,000 posts across 14 different health conditions (breast cancer, prostate cancer, lung cancer, depression, schizophrenia, Alzheimer’s disease, multiple sclerosis, cystic fibrosis, fibromyalgia, heart failure, diabetes type 2, irritable bowel syndrome, asthma, and chronic obstructive pulmonary disease) on the international support group forum Dailystrength.org.
Our research revealed a slight overall tendency towards emotional posts (58% of posts were emotionally oriented). Across all diseases, those who write more also tend to write more emotional posts—we assume that as people become more involved and build relationships with other users they tend to provide more emotional support, instead of simply providing information in one-off interactions. At the same time, we also observed that older people write more informational posts. This may be explained by the fact that older people more generally use the Internet to find information, that they become experts in their chronic conditions over time, and that with increasing age health conditions may have less emotional impact as they are relatively more expected.
The demographic prevalence of the condition may also be enmeshed with the disease-related tendency to write informational or emotional posts. Our analysis suggests that content differs across the 14 conditions: mental health or brain-related conditions (such as depression, schizophrenia, and Alzheimer’s disease) feature more emotionally oriented posts, with around 80% of posts primarily containing emotional support. In contrast, nonterminal physical conditions (such as irritable bowel syndrome, diabetes, asthma) rather focus on informational support, with around 70% of posts providing advice about symptoms, treatments, and medication.
Finally, there was no gender difference across conditions with respect to the amount of posts that were informational versus emotional. That said, prostate cancer forums are oriented towards informational support, whereas breast cancer forums feature more emotional support. Apart from the generally different nature of both conditions, one explanation may lie in the nature of single-gender versus mixed-gender groups: an earlier meta-study found that women write more emotional content than men when talking among others of the same gender – but interestingly, in mixed-gender discussions, these differences nearly disappeared.
Our research helped to identify factors that determine whether online content is informational or emotional, and demonstrated how posts differ across conditions. In addition to theoretical insights about patient needs, this research will help practitioners to better understand the role of online support groups for different patients, and to provide advice to patients about the value of online support.
The results also suggest that online support groups should be integrated into the digital health strategies of the UK and other nations. At present the UK plan for “Personalised Health and Care 2020” is centred around digital services provided within the health system, and does not yet reflect the value of person-generated health data from online support groups to patients. Our research substantiates that it would benefit from considering the instrumental role that online support groups can play in the healthcare process.
Read the full paper: Deetjen, U. and J. A. Powell (2016) Informational and emotional elements in online support groups: a Bayesian approach to large-scale content analysis. Journal of the American Medical Informatics Association. http://dx.doi.org/10.1093/jamia/ocv190
Ulrike Deetjen (née Rauer) is a doctoral student at the Oxford Internet Institute researching the influence of the Internet on healthcare provision and health outcomes.
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