Patient-powered research networks: building capacity for conducting patient-centered clinical outcomes research.

The Patient-Centered Outcomes Research Institute (PCORI) recently launched PCORnet to establish a single inter-operable multicenter data research network that will support observational research and randomized clinical trials. This paper provides an overview of the patient-powered research networks (PPRNs), networks of patient organizations focused on a particular health condition that are interested in sharing health information and engaging in research. PPRNs will build on their foundation of trust within the patient communities and draw on their expertise, working with participants to identify true patient-centered outcomes and direct a patient-centered research agenda. The PPRNs will overcome common challenges including enrolling a diverse and representative patient population; engaging patients in governance; designing the data infrastructure; sharing data securely while protecting privacy; prioritizing research questions; scaling small networks into a larger network; and identifying pathways to sustainability. PCORnet will be the first distributed research network to bring PCOR to national scale

Advancing Strategy: How to Lead Change in Corporate Societal Engagement

Implementing a strategy may be even harder than developing it. This learning brief is intended for corporate foundation and CSR leaders who have completed an initial strategy refresh process and who seek effecitve practices and tools to advance this strategy. In our experience advising more than 100 multinational companie, effective leaders facilitate structured, data-informed decisions and enable important organizational improvements to achieve their strategic objectives. Specifically, advancing strategy in corporate societal engagement typically requires leading change in two major areas of the overall portfolio: designing a signative initiative and transforming local giving

Connected seeds and sensors: co-designing internet of things for sustainable smart cities with urban food-growing communities.

We present a case study of a participatory design project in the space of sustainable smart cities and Internet of Things. We describe our design process that led to the development of an interactive seed library that tells the stories of culturally diverse urban food growers, and networked environmental sensors from their gardens, as a way to support more sustainable food practices in the city. This paper contributes to an emerging body of empirical work within participatory design that seeks to involve citizens in the design of smart cities and Internet of Things, particularly in the context of marginalised and culturally diverse urban communities. It also contributes empirical work towards non-utilitarian approaches to sustainable smart cities through a discussion of designing for urban diversity and slowness

Amplifying Quiet Voices: Challenges and Opportunities for Participatory Design at an Urban Scale

Many Smart City projects are beginning to consider the role of citizens. However, current methods for engaging urban populations in participatory design activities are somewhat limited. In this paper, we describe an approach taken to empower socially disadvantaged citizens, using a variety of both social and technological tools, in a smart city project. Through analysing the nature of citizens’ concerns and proposed solutions, we explore the benefits of our approach, arguing that engaging citizens can uncover hyper-local concerns that provide a foundation for finding solutions to address citizen concerns. By reflecting on our approach, we identify four key challenges to utilising participatory design at an urban scale; balancing scale with the personal, who has control of the process, who is participating and integrating citizen-led work with local authorities. By addressing these challenges, we will be able to truly engage citizens as collaborators in co-designing their city

Out there and in here: design for blended scientific inquiry learning

One of the benefits of mobile technologies is to combine ‘the digital’ (e.g., data, information, photos) with ‘field’ experiences in novel ways that are contextualized by people’s current located activities. However, often cost, mobility disabilities and time exclude students from engaging in such peripatetic experiences. The Out There and In Here project, is exploring a combination of mobile and tabletop technologies in support for collaborative learning. A system is being developed for synchronous collaboration between geology students in the field and peers at an indoor location. The overarching goal of this research is to develop technologies that support people working together in a suitable manner for their locations. There are two OTIH project research threads. The first deals with disabled learner access issues: these complex issues are being reviewed in subsequent evaluations and publications. This paper will deal with issues of technology supported learning design for remote and co-located science learners. Several stakeholder evaluations and two field trials have reviewed two research questions: 1. What will enhance the learning experience for those in the field and laboratory? 2. How can learning trajectories and appropriate technologies be designed to support equitable co-located and remote learning collaboration? This paper focuses on describing the iterative linked development of technologies and scientific inquiry pedagogy. Two stages within the research project are presented. The 1st stage details several pilot studies over 3 years with 21 student participants in synchronous collaborations with traditional technology and pedagogical models. Findings revealed that this was an engaging and useful experience although issues of equity in collaboration needed further research. The 2nd stage, in this project, has been to evaluate data from over 25 stakeholders (academics, learning and technology designers) to develop pervasive ambient technological solutions supporting orchestration of mixed levels of pedagogy (i.e. abstract synthesis to specific investigation). Middleware between tabletop ‘surface’ technologies and mobile devices are being designed with Microsoft and OOKL (a mobile software company) to support these developments. Initial findings reveal issues around equity, ownership and professional identity

Engaging sport students in assessment and formative feedback

Sport as a discipline in higher education is grappling with the challenge of providing authentic and relevant assessment that engages students in their learning. The centrality of assessment to the student experience is now well accepted within the research literature (Brown and Knight, 1994; Rust, 2002). In particular, formative assessment, or assessment that creates feedback to support future teaching and learning experiences, can be a powerful tool for enhancing learning (see Black and Wiliam, 1998). Given that feedback is most effective if it is considered or reflected upon, one of the key challenges is to actively engage sport students in formative assessment processes. This guide offers advice in designing and facilitating sport students’ involvement in assessment and enhancing their engagement with the feedback they receive. The aim is to support sport programme teams by taking a pragmatic approach, combining a clear academic rationale based on assessment for learning principles with case study examples of successful formative assessment exercises emphasising innovative approaches to giving feedback. The guide consists of three key sections focused on: 1) Providing staff in HLST with background knowledge of formative assessment and formative feedback and how it relates to their subject. 2) Providing case study examples of how to effectively engage sport students with assessment feedback so that it feeds-forward to aid learning. 3) Providing a resource of references and sources of support for tutors wishing to further their learning in this area

Making Exhibitions, Brokering Meaning: Designing new connections across communities of practice

New media museum exhibits often see designers representing the research of expert content providers. Despite perceptions that such exhibits provide museum visitors with a greater depth and range of experience, differences in knowledge and practice between designers and content providers can see content development become an unruly, competitive process in which audience experience, digital mediation, visualisation techniques and meaning become contested territory. Drawing on Etienne Wenger’s theory of “communities of practice”, this paper argues that designers’ advocacy for audiences and distance from exhibition content well positions them to broker interdisciplinary goal setting so that exhibitions observe the representational objectives of content providers and meet the needs and preferences of museum visitors. A wide range of design literature already discusses the pragmatic benefits and ethical importance of user-centered design, while the literature on co-design suggests that designed outcomes are more successful if the design process considers the interests of all stakeholders. These discussions can be compelling, but the inherent challenges in engaging others’ perspectives and knowledge in the design process are less acknowledged, Wenger’s ideas on the social dynamics of group enterprise offering designers valuable insights into the actuality of negotiating designed outcomes with non-designer stakeholders. The paper has two main aspects. The first outlines the theory of communities of practice, focusing on the brokering of knowledge and practice between disciplines. This discussion frames an analysis of the design process for two museum exhibitions. Representing an original application of Wenger’s ideas, the discussion recognises the unique role of the designed artifact in brokering information visualization processes, transcending the actions and intentions of individual stakeholders. While accepting there are successful examples of interdisciplinary exchange in various areas of design, the interpretation of examples via Wenger contributes useful principles to the theorisation of co-design with non-designer stakeholders. Keywords: Information visualization; New media museum exhibits; Multidisciplinary projects; Communities of Practice; Brokering; User-centered design; Co-Design; Etienne Wenger</p

Civic Identities, Online Technologies: From Designing Civics Curriculum to Supporting Civic Experiences

Part of the Volume on Civic Life Online: Learning How Digital Media Can Engage Youth.Youth today are often criticized for their lack of civic participation and involvement in political life. Technology has been blamed, amongst many other causes, for fostering social isolation and youth's retreat into a private world disconnected from their communities. However, current research is beginning to indicate that these might be inaccurate perceptions. The Internet has provided new opportunities to create communities that extend beyond geographic boundaries, to engage in civic and volunteering activities across local and national frontiers, to learn about political life, and to experience the challenges of democratic participation. How do we leverage youth's interest in new technologies by developing technology-based educational programs to promote civic engagement? This chapter explores this question by proposing socio-technical design elements to be considered when developing technology-rich experiences. It presents a typology to guide the design of Internet-based interventions, taking into account both the affordances of the technology and the educational approach to the use of the technology. It also presents a pilot experience in a northeastern university that offered a pre-orientation program in which incoming freshman designed a three-dimensional virtual campus of the future and developed new policies and programs to strengthen the relationship between college campus and neighbor communities

Artistic participatory video-making for science engagement

This paper uses theatre to frame reflexive discussions on the use of participatory video making for science engagement. The ‘JuxtaLearn’ research project is presented as a case-study that focuses on performance concepts such as audience, purpose, improvisation or final production as a lens for supporting technology-enabled creative exploration. Three different approaches were taken to creative participatory video making processes: co-creation by learners, as a communication tool for researchers and as a public engagement tool. Differing expectations about the timing and aim of the research process created considerable debate among the research team regarding the control of and purpose of filmmaking. It was not the topic of debate within the film that was deemed controversial, but more who, when and in what ways these debates occurred. Theatrical and HCI concepts of audience, performance ownership, improvisation and storyboarding, boundary object creation, participation and boundary creatures are foci of debate within the project