Rachael L. Fleurence, PhD, is the Program Director for CER Methods and Infrastructure at the Patient-Centered Outcomes Research Institute (PCORI). Under this remit, she is responsible for PCORI’s program to set up the National Patient-Centered Clinical Research Network. Prior to PCORI, Dr Fleurence worked in the field of health outcomes and comparative effectiveness research and was a senior leader at United BioSource Corporation where she led outcomes research teams. Dr Fleurence received a BA from Cambridge University (United-Kingdom), a MA in business management from ESSEC-Paris (France), and a MSc and PhD in health economics from the University of York (United-Kingdom).

Title:  Building the research infrastructure: the national patient-centered clinical research network

Among the Patient Centered Outcomes Research Institute (PCORI)’s most important initiative’s is the $68 million commitment to build a National Patient-Centered Clinical Research Network designed to improve the nation¹s capacity to conduct comparative effectiveness research (CER) studies. Our vision is to create a large, highly representative electronic data infrastructure that will facilitate efficient, large-scale observational research studies and the conduct of prospective pragmatic clinical trials within delivery systems. The network will foster research by working to establish a library of clinical data, drawn from electronic health records and other data sources, which is captured and stored in standardized, interoperable formats.

The presentation will describe the national data infrastructure which will consist of three main parts. The program kicks off fully in January 2014:

  • 8 Clinical Data Research Networks (CDRNs), system-based networks ‹originating in healthcare systems such as hospitals, health plans, or practice based networks ‹ with the potential to become components of a national electronic network.
  • 18 Patient-Powered Research Networks (PPRNs), activated groups of patients interested in forming a research network and participating in research.
  • A Coordinating Center (CC), which will connect all CDRNs and PPRNs in addition to providing technical and logistical support and assisting in the evaluation of the program.

The presentation will also describe some of the challenges ahead.

FitzpatrickGeraldine Fitzpatrick, PhD, is a Professor of Design and Assessment of Technology in the Faculty of Informatics at the Vienna University of Technology, and Head of the Institute of Technology Design and Assessment, and Head of the Human Computer Interaction Group.  Her research is at the intersection of social and computer sciences, with a particular interest in technology-support for healthcare, health and well-being and older people, and supporting collaboration/social interaction and quality of life more generally. She was previously Director of the Interact Lab at the Uni of Sussex, User Experience consultant at Sapient London, Snr Researcher at the Center for Online Health and the Distributed Systems Technology Centre in Australia, and also has a clinical background. She is a co-editor of CSCW journal, plays key roles in CSCW/CHI related international conferences, and is co-author with Gunnar Ellingsen of “A Review of 25 Years of CSCW Research in Healthcare: Contributions, Challenges and Future Agenda”.

Title: Towards designing Health IT that works – lessons from 25 years of HCI/CSCW research

The promises of IT for transforming healthcare have been around for decades, from single site EPRs in the 1970s, to recent large-scale national initiatives. Yet despite significant investments and years of experiences, many initiatives continue to be extremely problematic and are yet to produce effective outcomes. Further, research studying health IT deployments appears in diverse disciplinary venues, making it difficult to fully account for what is going on. HCI/CSCW constitute one such venue. In this talk I will present a critical overview of some of the health-IT-related research that has been published in HCI/CSCW over the last 25 years, based on a review conducted with colleague Gunnar Ellingsen.  One of the unique features of this research is its accounting for the complex situated realities of putting health IT to work in everyday contexts, a bottom-up view using largely qualitative methods and taking the broader socio-technical context of work as its unit of analysis. This unique feature, however, also presents a challenge, especially for how to translate findings for national-scale initiatives. If we are to have future health IT systems that really work, we need more engagement at the intersections of disciplines and between bottom up and top down perspectives.

Jiajie Zhang, PhD, is dean of The University of Texas School of Biomedical Informatics at Houston, where he also holds the Dr. Doris L. Ross professorship and serves as director of the National Center for Cognitive Informatics and Decision Making in Healthcare, for which he is principal investigator of the Strategic Health IT Advanced Research Projects Program’s patient-centered cognitive support initiative. Zhang has spent the past two decades conducting research in biomedical informatics, cognitive science, human-centered computing, decision making and information visualization. As an educator, he has taught courses in human-computer interaction, electronic health record usability, information visualization and technology-mediated social dynamics.

Title: EHR Usability: Current Status and Future Directions

EHR has great potential to increase care quality, efficiency, and safety through its wide adoption and meaningful use.  This is the major rationale behind the national HIT Initiative, started by President Bush in 2004 and strengthened by President Obama in 2009 with the $19 billion HITECH Act under ARRA, to have every American’s medical records on computers by 2014. However, there are non-trivial gaps between the status quo and the potential of EHR, mostly due to cognitive, financial, security/privacy, technological, social/cultural, and workforce challenges. These challenges have been addressed by the rich portfolio of programs at the Office of the National Coordinator, including Meaningful Use, Regional Extension Centers, Health Information Exchange, Beacon Communities, and the SHARP programs. In this presentation, the speaker will review the current status of EHR usability, present the progress of the SHARP-C work on EHR usability, and discuss the future directions of EHR usability research and practice.