I got filmed talking about my research at the Computing Community Consoritum (CCC) Symposium on Computing Research in May 2016.

I am very excited to share that Kevin Patrick (UCSD/Calit2) and I will be leading the Health Data Exploration project’s new efforts to advance the use of of personal data for public health research.

Our recent report, “Personal Data for the Public Good,” found that many people who track health-related data are interested in sharing that data with researchers in medical and public health — provided adequate privacy controls exist. We are building a Network to bring together companies that collect and store personal health data, researchers who mine these data, and other strategic partners. Through a set of research projects using personal health data, the Network will identify policies and best practices for using these new forms of data to produce transformative knowledge about health.

More details are available on our project website: http://hdexplore.calit2.net or in our press release.

The final report from the Health Data Exploration project has been published by the Robert Wood Johnson Foundation!

Personal Data Report CoverHealth-related data is being tracked more and more as the number of wearable devices and smartphone apps increase. Our report, Personal Data for the Public Good: New Opportunities to Enrich Understanding of Individual and Population Health, examines attitudes towards personal health data from the individuals who track personal health data, the companies involved in self-tracking devices, apps, or services, and the researchers who might use the data.

Three of us in the Department of Informatics at UC Irvine (Scout Calvert, Judith Gregory and I) collaborated with researchers at the California Institute for Telecommunications and Information Technology (Calit2) at UCSD (Kevin Patrick, PI) to produce the report.

Key Findings

  • Individuals were very willing to share their self-tracking data for research. However, the dominant condition (57%) for making their PHD available for research was an assurance of privacy for their data. Over 90 percent of respondents said that it was important that the data be anonymous.
  • This study showed that the current methods of informed consent are challenged by the ways PHD is being used and reused in research.
  • Researchers are enthusiastic about using PHD in research but are most concerned about the validity of PHD and lack of standardization of devices.

The report is available at http://www.rwjf.org/en/research-publications/find-rwjf-research/2014/03/personal-data-for-the-public-good.html

Presentation at 4S 2013

November 22, 2013 — Leave a comment

I recently presented on “Personal Genetic Code: Algorithmic Living, Genomics, and the Quantified Self” at the 4S (Society for Social Studies of Science) 2013 Annual Meeting in San Diego, CA. This was work done with Judith Gregory, Scout Calvert, and Geoffrey C. Bowker, in the EVOKE Lab at the UC Irvine Department of Informatics, with funding from the Intel Science and Technology Center for Social Computing.

Abstract: Quantified Self (QS) is a community of individuals who combine personal technologies (wearable sensors, smart phones, etc.) and self-monitoring (of diet, exercise, mood states, etc.) to make sense of their health and well-being. A growth area in QS is the relatively new availability of personal genomic testing. For example, for less than $100 companies like 23andMe will provide a kit for customers to send in a DNA sample that is then analyzed for approximately 250 aspects of health from back pain to breast cancer. Similarly, metagenomic analysis (genomic testing of populations of microorganisms) is being offered as a way to understand the ecosystem of non-human organisms to which our bodies play host. There is a growing awareness within the QS community that personal information can be even more powerful when it is made social. Several QS citizen science projects have started to aggregate personal genomic and metagenomic data to, for example, “publish their test results, find others with similar genetic variations, learn more about their results, find the latest primary literature on their variations and help scientists to find new associations” (http://opensnp.org). In this presentation, we will report on an ongoing study of personal genomics in the QS movement. We will examine the algorithmic rhetoric that surrounds personal genomics, probe how this algorithmic rhetoric is understood and experienced by those who are participating in QS activities, and explore how these participants understand the potential social and scientific benefits and risks of sharing personal health data.

Book Chapter Published

November 22, 2013 — Leave a comment

TEPL Book Cover

My chapter titled “Distributed Work: Working and Learning at a Distance” has been published in Technology-Enhanced Professional Learning, edited by Allison Littlejohn and Anoush Margaryan.

Abstract: Working at a distance has become commonplace. Co-workers may be spread around the world, perhaps never meeting face-to-face. Networked communication technologies are being used to support new ways of working in increasingly global organisations. This chapter provides an overview of the psychological and social challenges of working at a distance. It also discusses new organisational forms and types of distributed work that take advantage of distributed working arrangements. The chapter explores the implications of distributed work for professional learning, including impacts on training programs, organizational learning, and individual learning. The chapter concludes with a discussion of the potential of new technologies to support and improve professional learning in distributed organizations.

You can purchase the book from Routledge or Amazon.

My chapter titled “Distributed Work: Working and Learning at a Distance” has been accepted for publication in Technology-Enhanced Professional Learning, edited by Allison Littlejohn and Anoush Margaryan, to be published by Routledge.

Abstract: Working at a distance has become commonplace. Co-workers may be spread around the world, perhaps never meeting face-to-face. Networked communication technologies are being used to support new ways of working in increasingly global organisations. This chapter provides an overview of the psychological and social challenges of working at a distance. It also discusses new organisational forms and types of distributed work that take advantage of distributed working arrangements. The chapter explores the implications of distributed work for professional learning, including impacts on training programs, organizational learning, and individual learning. The chapter concludes with a discussion of the potential of new technologies to support and improve professional learning in distributed organizations.

FB_gay_searchI remember way-back-when, in the early days of Facebook, it used to be possible to run searches based on personal attributes. Anyone who listed themselves as a woman interested in women was easy to find. And then, I think in part due to complaints from users and privacy advocates, that functionality disappeared (or at least was a lot harder to access). Now it’s back with a vengeance.

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Updated Site Design

January 23, 2013 — Leave a comment

I’m sure that you, as a frequent visitor to MatthewBietz.org, have noticed that we’ve got a new (simpler) look. I’d been planning on updating things around here, but some lovely hackers have forced my hand. For the moment I’m using a default theme, but hope to customize it soon when I get a few spare moments.

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Two papers have been accepted to the CSCW 2013 conference: “The work of developing cyberinfrastructure middleware projects” and “Globally distributed system developers: Their trust expectations and processes.”

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Workshop Dates: 11-12 February 2012, Seattle, WA

Position paper deadline extended to 2 December 2011.

Science and engineering are facing huge increases in data volumes and shifts toward more data-intensive work. The amount of data being produced is rapidly increasing with the development of new sensing and computer technologies, increasing use of computational simulation, and a move toward larger-scale and more interdisciplinary projects. Two workshops at CSCW will explore data-intensive collaboration from sociotechnical perspectives.

W2: Data-Intensive Collaboration in Science and Engineering

  • WEBSITE: http://www.dicose.org/
  • THEMES: Infrastructures for Big Data; Interoperability and Standards; Data-Intensive Collaboration
  • ORGANIZERS: Matthew J. Bietz, Andrea Wiggins, Mark Handel, & Cecilia Aragon

W12. Mastering Data-Intensive Collaboration through the Synergy of Human and Machine Reasoning

  • WEBSITE: http://dicode.cti.gr/dicosyn12
  • THEMES: the synergy between human and machine intelligence; larger issues surrounding analytical practices and data sharing practices
  • ORGANIZERS: Nikos Karacapilidis, Lydia Lau, Charlotte Lee, & Stefan Rüping

PARTICIPATION: The workshops will be conducted independently on consecutive days. W2 is a bit more social and organizational, and W12 is a bit more technical. It is possible to attend either workshop by itself, but we are encouraging folks to go to both to encourage cross-pollination of ideas and approaches. Each workshop has its own instructions for position papers, but there is an option to submit a single paper to both workshops. Details are available at the workshop websites.