|Designing the CORE: A Platform for Connected and Open Research Ethics|
Workshop at the Pervasive Health Conference – May 16 2016 – Cancun (Mexico)Download our Call for Papers here
Today, researchers collect data ‘on-the-fly’ and in real-time to design meaningful, personalized and adaptive health interventions. Researchers are using devices and apps that enable data collection via Mobile Imaging, pervasive Sensing, Social media and location Tracking (MISST) Methods. While exciting, these methods raise new and nuanced ethical challenges that impact Institutional Review Boards (IRBs) and researchers alike.
Ethical and regulatory challenges are percolating within the MISST ecosystem including: (i) informed consent, (ii) risks assessment, and (iii) data management. We are working to improve the ethical design and review of MISST research, and the Pervasive Health community is an important stakeholder in this conversation. You can help design updated standards to guide the ethical and responsible conduct of research that involve pervasive sensing and ubiquitous computing technologies
We invite you to submit a 2-page ’Experience’ or ‘Vision’ position paper to email@example.com. Position papers should report either on:
(1) Experience: We are interested in the author’s first-hand experience using MISST technologies for data collection and a synopsis of the ethical and regulatory aspects they and their Institutional Review Board considered (i.e. type of device/app/method, how it is used, population(s) targeted, potential risks, planned risk management strategies and potential research benefits); or
(2) Vision: Share your vision of how the regulatory review process can be improved to both protect research participants and advance research with human subjects using MISST technologies.
Submit your position paper via email to firstname.lastname@example.org with the subject line “[PH2016]” no later than March 15, 2016.
The organizers and select CORE advisory committee members will evaluate each submission and authors will be notified of results. Authors of accepted papers will be invited to participate in the pre-conference workshop in Cancun. All accepted papers will be included in the Pervasive Health proceedings and published as part of the ACM Digital Library.
During the workshop, ideas presented in the position papers will be further developed through a design-thinking exercise (see below). We plan to invite workshop participants to submit an expanded version of their paper for consideration in a special issue journal in the setting of human-computer interaction or behavioral science. We are currently negotiating possible special issues with select editors.
Templates for Experience and Vision position papers will follow SIGCHI standards and are available here: [ms-word] [latex]. Please follow the templates that implement the standard ACM 2-column format for both categories of papers.
During the workshop, participants will be involved in an interactive ‘design-thinking’ exercise aimed at prototyping a new platform for Connected and Open Research Ethics (CORE). Design Thinking is a method of solving complex socio-technical problems based on a structured process for finding problems and solving them.
We will base the format of the workshop on the Double Diamond that is the heart of the Design Thinking process. There are four phases; the first two deal with defining the real problem, the second two with defining the solution.
DISCOVER and DEFINE
We will start with a seed of the problem (based on a group of people, a process, or a question) but we will recognize that this might not be the problem we need to solve. We will base our discussion on what our workshop participants observed during their daily work around ethics in research and technology within Pervasive Health and in the context of MISST. After reasoning on observed behaviors and common practices, we will engage in a consolidation phase where participants will take the collective observations and define the problem more precisely. Much of this will involve creating shared visual representations of what participants have been collectively observing.
DEVELOP and DELIVER
Next we will engage in an Exploration phase, and focus on ideating: with a well-defined problem we will brainstorm a number of different solutions. As opposed to the first phase where the group focused on accurate observations, this phase will be about generating a lot of ideas and exploring the design space. We will end with the last phase of our proposed approach, e.g. Prototyping and Testing. This will involve selecting the most promising idea, and testing and refining it into a final solution.
To prompt discussion and elicit observations, during the workshop we will introduce several MISST devices/apps, show examples of data and provide scenarios for how they are being used in research. We will prompt discussion to identify key architectural elements or building blocks to support both the MISST ethical standards and CORE prototype platform requirements. Discussion prompts will be guided, to some extent, by suggested standards to enhance the ethical conduct of research through participant engagement and practices that promote transparency and accountability.
For instance, we will ask our stakeholder participants to brainstorm on the following “How might we…” questions in relation to MISST tools and methods:
- How might we …design participant-centered and dynamic consent models that result in an informed participant?
- How might we …determine probability and magnitude of harm for both participants and bystanders?
- How might we …identify best practices for data management?
As part of the workshop’s deliverables we will ask participants to contribute paper prototypes, interactive presentations, or video prototypes that depict ideal front-end interfaces for our envisioned CORE infrastructure that will consider important aspects such as the review processes and the involved workflows. Additionally, to develop the CORE library (e.g., informed consent content/processes, protocol language, etc.) we will ask participants to provide sources of ‘best practice’ resources. Finally, to inform our recommendations for scaling and sustaining the CORE, we will invite discussion of strengths, weaknesses, opportunities and threats (SWOT) to adoption of CORE as an overall resource.
Nadir Weibel, PhD is a human computer interaction specialist, a Research Assistant Professor with Computer Science and Engineering at UCSD and a Research Health Science Specialist at the VA San Diego. Dr. Weibel is affiliated faculty with UCSD’s Center for Wireless and Population Health Systems (CWPHS), and the newly formed UCSD Design Lab.
Camille Nebeker, EdD, MS is Assistant Professor of Family Medicine and Public Health (FMPH) and brings extensive knowledge of federal regulations and institutional practices in human research protections. She is affiliated faculty with the UCSD Research Ethics Program and the CWPHS and is an internationally recognized leader in the field of applied research ethics.
Cinnamon Bloss, PhD is a clinical psychologist, an Assistant Professor in Psychiatry and Family Medicine and Public Health and affiliated faculty with CWPHS. Dr. Bloss is an internationally recognized leader on ethical issues surrounding genomic research, data sharing and privacy. Dr. Bloss is also co-investigator on the Robert Wood Johnson Foundation Health Data Exploration project, which closely aligns with our workshop’s objectives.