All goals and work packages for this project were successfully completed as summarized below. In addition, this project generated spin-offs beyond what was originally anticipated, and it was instrumental to: securing a number of new research grants, building a sustained program of research on patient-centered collaborative care, new partnerships in other projects nationally and internationally, and an agreement with a commercial company to marked the Connect platform resulting from this study.
Specific results related to each work package:
WP1: Summarizing the state of knowledge on ICT supported collaborative care models:
WP1 results were summarized in a literature review paper that summarizes the gaps and potentials of implementing the Chronic Care Model (CCM) (with currently the best supported evidence to improve chronic care), with the support of emerging information and communication technologies. The main results showed that existing interventions rely mostly on ?old-fashioned technologies?. The biggest challenges in facilitating implementation of Chronic Care Model components through ICT included poorly designed user interfaces, digital divide issues, and lack of integration with existing infrastructures. Technologies supporting the key component of CCM: ?productive interactions between the informed patient and the pro-active care team? were often one-way (provider to patient), and it was sometimes difficult to decipher how CCM was guiding intervention design.
WP 2&3: Mobile networks, connectivity, human-computer interaction, user-centered design and usability:
In WP 2 and 3 our team developed smartphone and tablet PC applications that enable mobile access to the Connect platform and were tested in a pilot study (part of WP5). Besides design guidelines and recommendations the scientific paper describes challenges and usability issues, but also the potential advantages of transferring the Connect system?s functionality to new types of devices (e.g. potential new contexts of use, further customization of system options, utilization of rich media, adaptation to new contexts).
In collaboration with Arizona State University we explored in more detail the challenges and issues related to eHealth literacy, and how this influences patient?s understanding and use of online health information systems. Resulting publications describe analyses of participants? barriers while performing online health information seeking tasks and classify them based on required literacy and cognitive complexity levels, and a scientific paper that analyses the knowledge- and skill- related barriers to effective use of eHealth tools and that characterize different cognitive dimensions of eHealth literacy.
Further, our team explored different challenges related to development and deployment of an IT architecture that provide flexibility and seamless adaptability to different context of use and user preferences and developed an infrastructure that can serve as a model for other patient-centered applications that require electronic communication between providers from within and patients from outside secure hospital IT infrastructures.
WP 4: Data security and legal issues:
WP 4 investigated different challenges related to privacy and security of patient health portals and explored different approaches to enabling access to patient portals over different platforms that are at the same time user-friendly, accepted and trusted by patients and comply with laws and regulations. The results are published in one conference paper that summarizes the issues related to EU legal-regulatory requirements for developing patient portals that enable storage, sharing and management of health data between different stakeholders (patient, healthcare institutions on different level of care). We present a list of guidelines that outline which security and privacy issues must be taken into consideration, and addressed when developing personal health records, and discuss them in the context of Norway. In the paper it is also discussed the issues that were not addressed in the existing regulations, but play important role in developing secure patient portals and propose a direction for further development of policies and legislation.
WP 5: Organizational care processes:
WP 5 included the evaluation of the web-version of Connect in real-life with cancer patients in a Norwegian municipality. Results are published in scientific paper who among other address the ?disconnectedness? between primary-specialist care and difficulties to collaborate across different levels of care. While technology can be a facilitator for more patient-centered collaborative care, institutional-centric perceptions of coordination advertently ignore service-users as the key node of coordination.
This project's overall objective is to develop and empirically verify an ICT platform for seamless individually tailored collaborative care between patients and care providers on the continuum of primary-specialist care. The model case is a device-indepen dent mobile multifunctional system with secure connectivity to electronic medical record systems, called Connect 2.0. Integrating theories from health and ICT related sciences, the project is organized into five work packages that focus on two of VERDIKTs research themes: Social Networking and Mobile Internet. We will (1) summarize the current state of collaborative health care models and their utilization of ICT research and innovations; explore challenges related to (2) information exchange between dev ices, platforms and systems; (3) human-computer interaction, (4) data security and legal issues; and (5) factors related to the successful adoption and implementation of systems such as Connect 2.0 to support patient-provider collaborative care. Finally we will explore how Connect 2.0 impacts interactions, communication and organizational processes in collaborative "real world" care. Project results will contribute to ICT strategies needed for realizing the intentions of Norways Collaboration Reform. The work expands partnerships between the Centre for research-based innovation (SFI) consortium (7 business / research partners) called Tromsø Telemedicine Laboratory (TTL), the Norwegian Telemedicine Center (NST), the Center for Shared Decision Making and N ursing Research (CSDM) at Oslo University Hospital, the Department of Computer Science, University of Oslo, the University Hospital of Northern Norway (UNN), Balsfjord Municipality, the Biomedical Information Research Center at the Marshfield Clinic Resea rch Foundation, and the Department of Biomedical informatics at Columbia University in New York.