Accepted position papers to the workshop:
A Critical Incident from an AAL Project: Choosing the services to include
Jean D. Hallewell Haslwanter, Upper Austria University of Applied Sciences (Austria)
Geraldine Fitzpatrick, TU Wien (Vienna University of Technology) (Austria)
This position paper describes a critical incident from an early AAL project related to the design decisions made about which features to include. In order to give the older users of a sensor-based telecare monitoring system more tangible value, a number of non-sensor-based interactive services were incorporated into the system which was installed in a residential facility. These services were chosen based on recommendations and input from older people. In the end though, many services were not used and actually contributed to the system being removed from residences.
Reflections on designing for unintended use
Koen van Turnhout, HAN University of Applied Sciences Arnhem (The Netherlands)
Jasper Jeurens, HAN University of Applied Sciences Arnhem (The Netherlands)
René Bakker, HAN University of Applied Sciences Arnhem (The Netherlands)
This position paper highlights some of the difficulties we experienced in the design of innovative solutions aiming at supporting self-orchestration and family care within the Dutch healthcare system. Designing for self-orchestration of care processes, means designing for the situation in which users will find their own uses of the system. In our experience, social software solutions are particularly prone to adaptation and appropriation by end users. However, as designers we find it difficult to design knowingly for unforeseen usages of the system. Building on our experiences with the design of a social family care application we explore some of the key difficulties in designing for unintended uses and offer some possible ways to incorporate unintended use more into the design process.
Facilitating participation by patients and family into hospital based multidisciplinary team decision-making
Bridget Kane, Karlstad University (Sweden)
Hospital based multidisciplinary team (MDT) structures typically exclude non-hospital based professionals and carers, including the patient for whom decisions are being made. This paper explains the MDT meeting process, including IT support, and highlights the weakness in not involving patients in the discussion around their disease, prognosis and care. Research on methods by which patients and their carers might be integrated is discussed.
Making a case for easily accessible electronic health records
A patient perspective on lack of availability of health information in critical situations
Jonas Moll, Uppsala University (Sweden)
More and more county councils in Sweden are now in the process of making electronic health records available for patient access. Studies have already been performed both in Sweden and abroad highlighting e.g. the potential in patient empowerment and the problems encountered with norms and regulations. It does not, however, seem like many of the arguments put forward are based on real-life scenarios. Through this position paper I am trying to make a case for easily accessible electronic health records. A real-life scenario, concerning myself, is described illustrating a situation in which the lack of access to electronic health records could have caused big problems both for my own health and for my safety. The described scenario is used as an argument for showing why it could be highly beneficial for patients to be in access of their own records online, especially with regards to results from regular check-ups.
“Please Do Not Confuse Your Google Search With My Medical Degree”?
How Accessing Electronic Health Records (EHRs) and Online Searches can Support Information Needs and Increase Understanding for Patients and Relatives
Hanife Rexhepi, University of Skövde
Christiane Grünloh, KTH Royal Institute of Technology Stockholm (Sweden) / TH Köln (Germany)
Åsa Cajander, Uppsala University (Sweden)
Isabella Scandurra, Örebro University School of Business (Sweden)
Patients’ use of eHealth services and other online sources to identify medical information has become increasingly popular. For many patients the Web is an important source where they can find information and advice about symptoms and treatments. The majority of patients sees the information on the Web as reliable and uses it to influence their healthcare. Healthcare professionals on the other hand remain skeptical about the advantages of the Web as a source of medical information for the layperson. Physicians have raised concerns about patients using online sources to find information about their health as they can misinterpret or misuse information. This can occur because patients may have inadequate health literacy and eHealth literacy or are not able to distinguish accurate from inaccurate sources. The aim of this position paper is to outline a critical incident that illustrates the patient perspective of searching medical information online in relation to the eHealth service Journalen where patients and relatives in Sweden can access their electronic health record online. The critical incident is based on a true story and describes how Steve received his cancer diagnosis, and how his wife Tina sought information on the Web to learn more about his condition. The case illustrates how reading the electronic health record and looking online for further information can improve patients’ understanding of their medical condition and empower them to make health decisions.