Summary: This report presents a summary of the fifth workshop on Infrastructures for Health Care. The theme for this edition, “Patient-Centered Care and Patient-Generated Data”, stimulated scholars from different disciplines to discuss new scenarios in which patient participation takes the form of contributing self-collected information to medical records.
Keywords: Patient-centered care, health IT, patient-generated data, data sharing, collaborative care, self-care, infrastructures, Personal Health Records, Electronic Medical Records, patient-provider relations, personal health information management.
Citation: Piras EM, Ellingsen G. International workshop on infrastructures for health care: patient-centered care and patient generated data. J Participat Med. 2016 Mar 23; 8:e4.
Published: March 23, 2016.
Competing Interests: The authors have declared that no competing interests exist.
The workshop Infrastructures for Health Care is a biennial event that started in 2009 in Copenhagen. It gathers researchers, health care and IT professionals, managers, and IT enterprises to reflect on collaborative work in the health sector supported by information and communication technologies and infrastructures. The community shares a perspective in which technologies are not to be considered per se but as parts of sociotechnical arrangements changing over time, subject to conflicts, negotiations, and interpretations.
The event hosted in Trento, Italy on June 18-19, 2015, invited participants to consider the intersections between health care infrastructures and “patient-centered care and patient generated data,” a timely topic for participatory medicine. In a landscape increasingly populated by low-cost self-tracking technologies, patients are becoming health data “prosumers” (producers and consumers); by sharing data with their care providers they are helping to creating new forms of therapeutic alliance. The integration of data produced by patients with traditional medical information has been heralded by many as a new frontier of health care provision.
To date, the health care sector has only partially responded to these challenges, and development projects in this area have mostly targeted specific technologies for patients, notably patient portals or personal health records. These systems, however, are often confined precincts rather than integral parts of a seamless web of communication and infrastructures  and the integration of functionalities for patients in existing medical infrastructure has proved difficult. Accordingly, most existing health care infrastructures still reflect a provider-centered technology focus in a landscape increasingly dominated by patient-centered and participatory medicine discourses.
The three keynote speakers each addressed the challenges of incorporating patient-generated data in existing health care infrastructures. Carla Simone pointed out that information sharing between health care professionals and patients — far from being a mere technical issue — involves creating a community of practices where different perspectives need to be reconciled. Implicitly questioning the notion of patient-centered care, she proposes a more balanced relationship aimed at overcoming linguistic problems to increase mutual trust and engagement. Margunn Aanestad reminded the conference attendees that existing information infrastructures have a long history behind them. The usual practice of building on existing infrastructures simultaneously fosters their growth and constrains them. This reflection has important implications, as it suggests that ITs for patient-generated data sharing will need to take into account the existing infrastructural landscape and be shaped accordingly. The last keynote speaker, Hilda Tellioglu, invited the audience to widen their perspective to include caregivers and to consider them legitimate participants in data production and in sharing who might benefit from dedicated ITs and infrastructures. Extending the network of health information management and circulation requires careful evaluation not only of the specific needs of each actor but also of how data are to be presented, formatted, and shared.
The workshop was organized in six sessions, each with a focus: patients, methods, collaboration, architectures, innovation, infrastructure development. Three themes emerged in many of the presentations:
- Data sharing as the making of a new computer mediated relationship. Making health information sharing possible requires setting up a new sociotechnical configuration, taking into account the different perspectives of actors involved as well as regulatory constraints. It entails reconfiguring patient–provider relationships and making new forms of technologically-mediated proximity. However, this cannot simply be achieved by design; rather, it is an open-ended process that is iterative in nature and time-consuming. Even more daunting is the realization that the content of this new relationship, just like any social relation, cannot be predefined in advance but is subject to conflicts, negotiations, paradoxes, and ambiguities.
- The need to include other actors in the process. While the emphasis is generally on patients and doctors, computer-mediated forms of interaction must include other actors in the picture. Nurses, research scientists, IT vendors, and managers all need to be taken into account. Some actors and activities might be more visible than others, but successful collaboration is the result of coordinating a larger set of professions, knowledge, and technologies. This calls into question the scholar’s ability to examine thoroughly the invisible background and articulation work of all the components of the sociotechnical system.
- Redesign organizational processes and rethink self-care. Sharing patient-generated information across medical infrastructures calls into question the issue of collaboration across institutional boundaries between actors with different needs and competencies. Clinical work needs to be rearranged to allow new tasks to fit in. Health care professionals will need to develop new competencies to engage in infrastructure creation or management. All these activities contribute to successfully establishing appropriate IT usage in a given context. Self-care practices themselves need to be rethought, taking into account the need to make personal information intelligible to clinicians.
The workshop confirmed that the over-optimistic scenarios depicted by some techno-enthusiasts are not right around the corner. A lot of work is required to make patient-generated data sharing a part of everyday clinical work. The two days’ work stimulated reflections on the intricacies and ramifications of having these technologies in place. Some cases reported, however, revealed the potential of data sharing in promoting richer and more participatory forms of patient-doctor relations.
This report represents the view of the authors, who chaired the workshop. All the short papers and the presentations of the keynote speakers are available at http://infrahealth2015.fbk.eu/.
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Copyright: © 2016 Enrico M. Piras and Gunnar Ellingsen. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.