Bringing together stakeholders in care technology

The Caring Futures research project is led by the Department of Care and Ethics at the Faculty of Health Sciences, with the aim of further developing care ethics in an increasingly technological health and welfare sector. After a short introduction to the workshop and the Caring Futures project by Associate Professor Ingvil Hellstrand, who is also a work package lead in the Caring Futures project, the manager of Health Campus Stavanger, Line Hurup Thomsen spoke about the aims of the recently created innovation hub. Health Campus Stavanger is an innovation and co-creation arena for the range of stakeholders – primary and secondary healthcare services, business enterprises, academia, patients and next of kin. The University of Stavanger is one of the partners, and the innovation hub has an firmly established collaboration with the Caring Futures project.

An excellent initiative

“The Caring Futures project is very important for our stakeholder environment here at Health Campus Stavanger and vice versa. The aim of this workshop is to enable a multi-stakeholder dialogue to create a framework for ethics when using technology in healthcare” Thomsen elaborated.

During the second half of the workshop, participants were invited to form groups to discuss ethical dilemmas with the implementation of technology in healthcare. Thomsen found it rewarding to hear the voices of patients and next of kin, users who are actual recipients of healthcare services.

“It is important that these user opinions and perspectives reach researchers, clinicians, and technology developers. It is also very exciting to hear instances of how they themselves come up with solutions that make their everyday lives easier.” said Thomsen.

The need for next of kin involvement

Steinar Nilsen is one such father who has found a solution that simplifies his and his family’s daily life. Nilsen’s daughter has Rett Syndrome, a severe developmental disability caused by a disorder in the brain resulting from a gene defect on the X chromosome (MECP2). The disorder causes a progressive loss of motor skills and language. Nilsen has designed and developed a treadmill solution that enables his daughter to walk for about an hour a day without their assistance. Nilsen presented this as part of his talk at the workshop about his encounters with welfare technology in his role as a parent.

“Since we use these services daily, it is so important to highlight our experiences as next of kin. Today I received a lot of positive and inspiring feedback,” said Nilsen.

His family have been member of the Norwegian Association for Rett Syndrome since the day his daughter was diagnosed 13 years ago, and he stated that this has been a huge source of help in their daily lives. A regional contact person from the association came to their home shortly after registration with lots of helpful advice. Nilsen's family travels annually to a seminar in Oslo and for the past six years, they have participated in a summer camp in Denmark together with 20 other families in the same situation. They also share experiences on their own Facebook page.

“There is such a variety of user groups and so many perspectives to take into consideration when developing welfare technology. It is the concerted efforts of next of kin that drives the development exploitation of the kind of services my daughter and others in her situation need. Even within these groups, there are many different views about user needs.” says Nilsen.

User involvement in product testing

The last talk of the workshop looked at care technology from a supplier's perspective. The talk was presented by Marit Hagland, project manager for the Norwegian Smart Care Lab (NSCL), which has strong connections to Health Campus Stavanger. NSCL is a part of the Norwegian Smart Care Cluster (NSCC), and they test and verify ideas, products and prototypes for the healthcare industry. NSCC is an arena for interaction and networking between companies, municipalities, the regional hospital and academia.

“Our services contribute to the faster development and commercialization of products and solutions. We do this by ensuring that the solutions are tested and adapted to the customers' requirements and needs. At the same time, we ensure that the solution satisfies legal norms and standards.” says Hagland.

New ways of delivering healthcare services are crucial for a sustainable health and care sector in the future, according to Hagland. While technology offers a sea of possibilities, there are many technical, practical, and legal obstacles to overcome before solutions can be implemented on a large scale. She points out that stakeholder involvement is paramount in these processes, particularly the involvement of end users from the healthcare sector as well as patients and next of kin. 

“Steinar Nilsen's talk today was very rewarding and gave me insights into the daily life of a family using welfare technology. It was exciting to hear about the solution they had developed for treadmill training - a solution that could be useful for many others as well. Perhaps we could work with this in our incubator eventually.” concluded Hagland.

Text and photo: Eigil Kloster Osmundsen