Leading the way for greater social innovation
The DöBra (“Die Well” ) cards help people to reflect on and talk about their values and preferences for the end of life—a topic that can often be difficult to raise. This tool was developed through an interdisciplinary research programme at Karolinska Institutet and Umeå University, and has contributed to an ongoing process to develop support for social innovations at Karolinska Institutet.
Prepares people for future meetings at the end-of-life
DöBra is a national research programme run by Karolinska Institutet and Umeå University. The programme includes a number of research projects that aim to raise issues surrounding dying, death and grief to better prepare people for future encounters with the end-of-life.
The DöBra cards have attracted attention from the general public, professionals and different media. They are based on what is internationally known as “advanced care planning”, which, among other things, involves early consideration of your values and preferences prior to the end-of-life, preferably before illness develops.
The Swedish version of the cards consist of 37 statements about what can be important towards the end-of-life, for example: “to be free of pain”, “to keep my sense of humour”, “to have my funeral arrangements made”, and “to have my family with me”. There are also ‘wild cards’ for more individual things that may be important to a person. The cards can aid personal reflection in addition to conversations with others, for example with relatives and healthcare staff.
“If you are able to discuss these issues in advance, you may be more prepared to deal with an acute situation when it’s really necessary,” says Carol Tishelman, professor in innovative healthcare, and DöBra programme director.
The Swedish cards are based on the “Go Wish” card game which was developed by the nonprofit organization Coda Alliance in the US. DöBra researchers translated and adapted the cards to the Swedish context working in partnership with different patient and retiree organisations.
“We hope that we’ve developed a set of cards that do not systematically eliminate anyone living in Sweden, regardless of background. The topics are selected to trigger discussion rather than being precise questions about different situations or events that can occur,” says Sophia Savage, DöBra programme program manager.
“We want to maximize the societal benefits of our work, rather than make money from it.”
A model for social innovation
During the project, researchers were contacted by members of the public and healthcare professionals who wanted to buy a copy of the cards to use outside of the research setting.
“This is why we’ve made the card game available to the public by working with a publisher that distributes it in physical bookstores and online. We want to maximize the societal benefits of our work, rather than make money from it,” says Tishelman.
The process to make the cards accessible to the general public shed light on the need for improved support for researchers who want to disseminate different types of research-based social innovations.
“It’s been a long process for us to gain clarity on what we as researchers may and may not do, for example in financial and legal contexts. At the university you’re encouraged to start businesses to commercialise research results, but that wasn’t our aim. We wanted to keep our focus on research, but at the same time we wanted the cards to be available to as many people as possible,” explains Tishelman.
An initiative is now underway between the research group and different stakeholders in Karolinska Institutet’s organization and KI Innovations to expand and improve social innovation support structures.
“We see considerable potential for social innovation at Karolinska Institutet in general, and specifically in disciplines not often actively engaged in innovation at present, and we hope that improved support can contribute to creating more research-based societal benefits,” says Savage.