Research

Subproject 1 (SP1) was being conducted at the University of Rostock and the German Center for Neurogenerative Diseases within the Helmholtz Association under the supervision of Prof. Dr.-Ing. Thomas Kirste and Prof. Dr. Stefan Teipel.

Objectives

The aim of SP1 was to further explore the potential use of intelligent sensing technologies for improving patient-centered care, increasing the efficiency of care-giving processes and empowering patients and caregivers. Thus far, wide-ranging ethical and legal challenges have arisen, particularly with regard to the need of access to extensive annotated data, which form the basis for training and calibration of these systems. Affected persons must therefore be involved in the research process from an early stage on, in order to develop ethical acceptable and sustainable solutions for data collection. Furthermore, intelligent sensing systems require an ethically reflected vocabulary to characterize everyday behavior. This vocabulary provides the ground truth code book and defines the dimensions of mechanical behavior interpretation. It thus represents an assessment of rationality and affects of individual behavior with respect to the healthcare process and its inherent values.
This connection between health care values and ontology design needs to be reflected in the system development process, which is why we propose the value sensitive and affect-aware design. In SP1 we developed organizational and technical methods to achieve an appropriate tradeoff between ethical concerns, empowerment and research needs. With respect to the life cycle of intelligent sensing systems, SP1 focused on the critical phase of system development studies.

Methods

A systematic approach to address the objectives has to progress along three lines:
(1) Ensuring participants‘ and stakeholders‘ acceptance of system development studies,
(2) the investigation of surrogate technologies for obtaining training data,
(3) adequate consideration of the affective valence of behavior interpretation vocabularies.

TP1 utilized the SAMi-project as a sample specimen and considers three research questions, formulated as testable hypotheses:
(1) Using methods of value sensitive design (VSD) will lead to higher rates of acceptance of technology development research and a lower number of instances of potential value conflicts between stakeholders.
(2) Using surrogate technologies for obtaining ground truth offsets the loss of information incurred by these technologies.
(3) Providing stakeholders participating in ontology construction with background on the principles and limits of computational behavior analysis will (3a) increase technology acceptance, and (3b) reduce the expected semantic differential in system operation as measurable by affect control theory.

Research methodology followed the VSD framework.

Subproject 2 (SP2) is being conducted at the Division of Assistance Systems and Medical Device Technology at the Carl von Ossietzky University of Oldenburg under the supervision of Prof. Dr.-Ing. Andreas Hein.

Objectives

The aim of SP2 is to investigate whether different assistive systems developed with a focus on patients without cognitive limitations can also be used in the care of people with dementia (PWD) or which barriers exist.

The concrete cases comprised monitoring systems and robotic assistance in home care settings. The working group Hein has extensive experience with the development of monitoring systems in the home of older people as well as the development of assistive systems for the support of home care (palliative care, intensive care etc.). Both have the potential to empower PWD and caregivers but can also interfere with private care relations and professional self-understandings.

Methods

In particular, the following sub-questions were addressed by SP2:
(1) What technical approaches to indoor and outdoor localization can be used? How can we find a compromise between a sufficient technical accuracy for different assistance functions for the caregiver on the one hand and the protection of privacy on the other?
(2) How can functional parameters of the patient be derived from the technical observations and typical behavior patterns be learned? How are normal behavior and deviations from normal behavior interpreted?
(3) How can robotic systems be integrated into the care of PWD? What forms of interaction are appropriate? What target parameters (also including the results of the affective evaluation of situations from SP1) can / may be automatically controlled by robotic assistance systems? How can robotic systems empower both PWD and caregivers?

A scenario-based approach was used to investigate these questions. Outpatient care scenarios relevant to everyday life in question 1 have already been collected within the framework of the QuoVadis project (supervised by Prof. Dr. Hein). These were supplemented by an analysis of qualitative interviews with experts and relatives (3) with regard to questions 2 and 3. The interviews were conducted in close cooperation with SP3 and SP4. At least one scenario per question was implemented in the laboratories at the University of Oldenburg (RoboticCareLab) and at OFFIS (IdeAAL Lab).

The following three scenarios taken from already existing assistive systems were transferred to the application for people with dementia:
(1) Security scenarios from the QuoVadis project (sensor based monitoring system),
(2) Support scenarios from projects such as GAL (sensor based monitoring system for complex activity chains)
(3) Robotic support systems from BMBF-projects iTAGAP and PIZ (support for carers and patients in home care).

Subproject 3 (SP3) was conducted at the Department of Health Services Research at the Carl von Ossietzky University of Oldenburg under the supervision of Prof. Dr. Mark Schweda.

Objectives

The aim of SP3 was to explore affected peoples’ views regarding the CIMADeC systems in SP1 and SP2. It focuses on the acceptance and acceptability of these technologies with particular respect to notions of and requirements for privacy in care.

CIMADeC poses serious challenges to common notions of privacy. Co-intelligent sensor technologies and robotic assistance systems can help protect and enhance privacy in care. However, they can also interfere with the privacy of affected people’s self-understandings and self-interpretations as well as with the privacy of everyday life and care relations in both domestic and institutional settings. This can have a profound impact on the technologies’ acceptance among those affected and calls for a deeper and more comprehensive understanding of the value of privacy in regard to a good life in care relations. Therefore, the respective views and attitudes of customers/patients and relatives had to be explored in more detail.

Methods

In order to include affected people’s views on CIMADeC, the ethical analysis was combined with methods of qualitative social research. We first conduct a systematic analysis of the academic, international discourse on privacy in the context of dementia care. Against this background, qualitative, semi-structured interviews (27) were conducted in order to explore notions of and needs for privacy and the underlying ideas and attitudes. Both PWD themselves and family caregivers in the home and institutional environment were interviewed. On this basis, the value of privacy in the context of technically assisted care for people with disabilities was empirically investigated and conceptualized from an ethical perspective. Related topics such as the role of intimacy, shame and trust were also included in our analysis.

Subproject 4 (TP4) was headed by Prof. Dr. Silke Schicktanz at the Institute of Ethics and History of Medicine at the University Medical Center Göttingen.

Objectives

he aim of this sub-project was to explore the perspectives and attitudes of professionals towards the CIMADeC systems described by SP1 and SP2 and to reflect ethically on the effects and conditions for empowerment.
In both institutional and home care, acceptance of the socio-technical systems described by all those involved is of the utmost importance. CIMADeC in institutional care facilities such as nursing homes requires the social acceptance of both professionals and residents. For the professional staff (doctors, nurses, social workers, cleaning staff, etc.), such systems can provide support in their work. For example, they can enable a better assessment of the location or mood of residents and provide support for physically demanding tasks. However, they can also pose a threat to (sometimes already precarious) working conditions. It is therefore important to understand how professional ethos and self-image are influenced by such socio-technical systems and how changes in everyday working life are perceived and morally evaluated.

The focus of SP4 was on the positive and negative potentials of empowerment, both as a process and as a result of social care relationships in the context of technically supported care.

Methods

Since knowledge about the moral and social issues is insufficient, exploratory qualitative interviews were conducted with experts:

(1) with German-speaking experts (20) from the fields of
computer and engineering sciences, professional nursing associations and care research, practice and policy
(2) with professional carers (21)

In order to make a theoretical contribution to empowerment in this specific technological context, SP4 also focused on the complex ethical concept of empowerment, which plays a central role in dementia care. Different levels of interaction in the following five dimensions were comprehensively examined:

(1) Privacy,
(2) safety,
(3) participation in decision-making in relation to the development and use of technology
(4) well-being and
(5) responsibility in individual cases.