Authors:
Gillian Hayes
Medical computer science, information science, information theory, biomedical computing, biocomputation, systems biology, medical informatics, bioinformatics, biomedical informatics, health informatics, wellness informatics, crisis informatics, community informatics...
These are just some of the many terms used to describe a set of research and practical interests that have emerged in the past half-century around the intersection of computational technologies and healthcare. For overviews of some of the research in these spaces, I direct readers to Geraldine Fitzpatrick and Gunnar Ellingsen's recent review of the past 25 years of CSCW and health [1] and to Monica Tentori et al.'s survey of pervasive and ubiquitous computing's treatment of health (often called simply pervasive health) [2]. Whether we are describing the early use of punch cards to store epidemiological information, comprehensive electronic medical records systems, or apps for your mobile phone, there is no doubt this broad area is a significant space for designers, researchers, and practitioners of all kinds.
Healthcare is information-based, but just what is meant by information bears some elaboration. Evidence-based medicine typically refers to the practice of clinicians using the best information available from research and practice to make data-based decisions about courses of action. Physician encounters are inherently information-rich and often involve a mixture of eliciting information from patients and family members, consulting in-house and shared records, performing physical exams, and collecting data from myriad analog and digital machinery. At the same time, patients and families are becoming more savvy and empowered, collecting information themselves from books, the Internet, and a variety of other sources, including advertisements that now target consumers directly. As a means of introducing myself as the new Health Matters forum editor, here I will lay out just three of the many ways in which I think designers, researchers, and practitioners are reconsidering information and evidence within the realm of health IT.
In thinking about taking over this forum and filling the very big shoes of Beth Mynatt, the previous Health Matters editor, I spent a lot of time considering the community whom I hope to represent and from whom I hope to curate articles. I was reminded of a conversation at the 2010 Workshop on Interactive Systems in Healthcare (WISH). When asked what conferences they regularly attend, the 28 members of the 2010 WISH steering committee collectively listed 52 separate events, many noting that these were only the "general" conferences. By this, they meant that disease-specific, regional, and other specialty events were excluded. The journals they regularly read numbered nearly the same. In the past decade, a huge quantity of new events have emerged around these themes, including but not limited to Pervasive Health, Games for Health, Health 2.0, and International Health Informatics (IHI). During this same time, there has been continued interest within the more established communities through such efforts as the People and Organizational Issues Working Group from AMIA and the health community at CHI. Proceedings from these various events and journal articles are available through a host of libraries, not all of which cross index (e.g., ACM's Digital Library, PubMed, and JSTOR). How can an interdisciplinary researcher or practitioner hope to keep up in such a fragmented community? I don't have a great answer to this question, but I do hope this forum in interactions can be a place where practitioners, designers, and researchers from all of these fields feel welcome to submit content and compelled and interested to read published work.
My goal as editor is to encourage readers to submit a wide variety of content to this forum, including completed research, works in progress, design briefs, critiques, visions of the future, and conceptual pieces, all related to health technologies. To start things off, I present here some of my own thoughts about the major trends currently in HCI and healthcare, in particular around the rise of self-tracking, the collection and use of "big data," and the materiality of health data and systems.
The Rise of Self-Tracking
The proliferation of sensing platforms, health-related mobile apps, and home-based medical systems has resulted in the potential for substantial data tracking about one's self or a friend or family member. For example, the Quantified Self movement [3] is a self-described "collaboration of users and tool makers who share an interest in self knowledge through self-tracking," many of whom are using "personal informatics" tools for "self-reflection and self-monitoring" [4]. Likewise, the Robert Wood Johnson Foundation's Project HealthDesign effort "advances a vision of personal health records as springboards for action and improved health decision-making" [5].
These tools and approaches have much promise in terms of improving health outcomes and improving efficiency within the health system. In fact, the healthcare system sees so much potential value in this data that Meaningful Use Stage 3 is likely to include patient-generated data [6].
This "algorithmic living" [7] has the potential to change the way that people relate to their own health information. In particular, questions are left open as to how people craft self-understandings with and through this data. Additionally, although the emphasis by many has been on the self, people use the data not only to reflect on their own situations but also to present information about themselves to others, including friends, family, and professional providers. As an added challenge, these tools often must be used by caregiversthe parent of a sick child, the adult spouse or child of a disabled adult, and so onwho experience their own trials alongside those of the person for whom they are caring, whereas most personal informatics technologies are just thatpersonal. Taken together, these issues represent substantial opportunities and challenges for the community going forward in consideration of how data is collected, aggregated, manipulated, and culled.
Big Data
Of course, as patients, providers, and families take up the idea of collecting and sharing their data, these enormous collections of localized personal health information may become big data in their own right. In fact, many clinical researchers, epidemiologists, actuaries, and policymakers are counting on it. These experts make decisions based on large statistical models of health data to create "evidence-based" policies, practices, and procedures. In the past, this evidence has been collected by professionalseither researchers or clinical professionalstrained in the identification and storage of only very particular data elements. As data-collection activities become a part of everyday life, done by a wide variety of interested people, questions arise about the design of systems that support both human and algorithmic decision making based on this data.
At the same time, this movement from private personal informatics tools and datasets to major shared information repositories is relatively apparent in some cases. For example, sites like PatientsLikeMe [8] focus on sharing and making accessible datasets related to specific diseases. However, new research and commercial systems emerge every day to track medication adherence, nutrition and fitness, driving habits, and numerous other health and public health concerns. These systems are not necessarily designed to hold big data, but they facilitate data collection and could easily eventually be turned into systems to collect and aggregate substantial health data.
The collection and eventual aggregation of this data raise significant concerns around privacy and trust, as well as substantial opportunities for greater understanding at both the individual and population level. Likewise, the use of this data to make decisions means that patients, family members, friends, and professionals are all now both producers and consumers of "big" health data. Now is the time, then, to ask questions and make advances in the design of these systems to support understanding of the provenance and potential movement of data, and the development of standards around data integration and policies for protection of individual and community rights and responsibilities.
Materiality of Health Information Systems
At the same time that these systems and machines are making vast amounts of physiological and behavioral data "virtual" and transporting them as bits and bytes into databases, they inherently exist in a very real, physical, material space. This materiality of information includes consideration of the interrelationships among the particular material instantiations that enable the flow and storage of information.
Health IT may bring certain aspects of this issue to the forefront even more profoundly. For example, one of the most likely ways to spread disease in a hospital is through the germs physically carried on a mobile phone [10]. A model of contagion in clinical settings that includes the use of mobile devices draws our attention to both the very mobile and human nature of medical care, as well as to the physical and material nature of virtual or digital information. At the same time, limitations in both home- and clinic-based instrumentation are found in the relationship between these instruments and the human bodies they are meant to measure. Designing systems to hold up to the biological agents of an operating room or the environmental challenges of an infant's crib or an eldercare facility reminds us regularly that our digital systems are built upon, alongside, as part of, and in service to the very real physical worlds they inhabit. Moreover, people dynamically create assemblages of these infrastructures to make the information tasks at hand possible.
The Future of Interactive Systems for Health
The broad relationship between computing and healthcare is substantial, well documented, and far beyond the scope of any individual article. Thus, neither this article nor this forum reflects a definitive report on how things are or should be among the vast and varied stakeholders in the research and commercial arenas surrounding HCI and health IT. Additionally, I will not attempt to convince any readers that some magical combination of IT and healthcare will make our lives better, easier, or longer. There are already enough pundits and policymakers making that argument.
Although substantial progress has been made in research, commercial enterprises, and clinical care, health IT is in many ways still in its infancy. In particular, the human aspects of these systems leave open many challenges and opportunities. Whether we are talking about making and using abundant data; reimagining the role of the clinician, caregiver, and patient; or using technologies for the masses to create healthcare for large populations, considerations of the entire health system, including people and technologies, will be essential. Thus, the future of interactive systems for health lies in the deep connections and collaborations among computing, social-behavioral, and biomedical researchers and professionals.
The ideas and commentary presented here are heavily influenced by the broad, disparate, and intellectually engaging groups and individuals working in this space, some of whom I have had the honor of working with and many more who have influenced myself and others through their writings and presentations. Despite the best efforts of quite a few of those people, I am likely to have asserted some beliefs and suggestions that may be controversial. If so, I encourage you to submit your perspective to the forum so that it can be represented. I see this forum as a collegial place to discuss a wide variety of issues and to bring to light the struggles that vast groups of people are experiencing and the progress they have made.
References
1. Fitzpatrick, G. and Ellingsen, G. A review of 25 years of CSCW research in healthcare: Contributions, challenges and future agendas. Computer Supported Cooperative Work (June 2012).
2. Tentori, M., Hayes, G.R., and Reddy, M. Pervasive computing for hospital, chronic, and preventive care. Foundations and Trends in Human-Computer Interaction 5, 1 (2012), 195.
4. http://personalinformatics.org
5. http://www.projecthealthdesign.org/about
6. http://www.ihealthbeat.org/features/2012/meaningful-use-stage-3-could-include-patient-generated-health-data.aspx; For those of you who don't know about Meaningful Use, it sets the specific objectives that clinics, hospitals, and medical professionals need to achieve to qualify for a set of incentives in the U.S. These objectives are all centered on the ways in which health technologies can improve quality of care, efficiency, and other important metrics while maintaining the privacy and security of health data.
7. http://socialcomputing.uci.edu/content/research-themes
8. http://www.patientslikeme.com
9. Dourish, P. and Mazmanian, M. Media as material: Information representations as material foundations for organizational practice. Proc. of Third International Symposium on Process Organization Studies (Corfu, Greece). 2011.
10. Singh, A. and Purohit, B. Mobile phones in hospital settings: A serious threat to infection control practices. Occupational Health and Safety. March 1, 2012; http://ohsonline.com/articles/2012/03/01/mobile-phones-in-hospital-settings.aspx
Author
Gillian R. Hayes is an assistant professor in the School of Information and Computer Sciences, the School of Education, and the School of Medicine at UC Irvine. Her research interests lie in HCI, ubiquitous computing, assistive and educational technologies, and health informatics.
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