ASSIGNMENT. On April 1 Inger Ekman leaves her assignment as director of the Center for Person-Centered Care (GPCC) due to the University’s rules for management assignments after reaching retirement age. During her time as director, person-centered care has gone from being a relatively unknown concept in Sweden to an approach that has been introduced by more than half of all Swedish county councils. Inger Ekman sums up her nine years as GPCC’s director here.
You are now leaving your position as director of GPCC that you have held since the center was established in 2010. How would you like to summarize your time in this role?
“It has been exciting, enjoyable and enriching!”
The vice-chancellor of the University of Gothenburg asked you to take charge of an application in the field of health care research, one of the national strategic research areas (SFO) in which the Swedish government wanted to support research domains with the potential to become a leader in Europe. How did you go about it?
“I sent an e-mail to all deans at the university, inviting all interested researchers in each faculty to a meeting. I think that was in December 2008. More than 30 researchers from six of the university’s seven faculties came to this meeting. We had a discussion about different themes. At that time I already had received a research grant from the Swedish Research Council for research on person-centered care, and we ultimately agreed that the application should have that theme.”
The strategic investment was expressly interdisciplinary. Why was interdisciplinary research necessary regarding person-centered care?
“Health care and medical services are a complex system where a number of disciplines are needed to acquire knowledge about how a change can take place. Obviously that includes all disciplines within Sahlgrenska Academy, but subjects such as philosophy, education and economics also are required for knowledge creation within the field. Maintaining this multidisciplinary collaboration proved to require active involvement.
“The shared ethical linchpin has strengthened us, and we have always been united in accepting what the human being, the individual, represents. This has kept our collaboration on track. Researchers from different disciplines have then come in with their models and theories, but all of us had the same ontology as a starting point. We have focused on conducting controlled studies, which proved to be very successful because we have been able to show that person-centered care means proper care from a patient perspective and is cost effective.”
What are you most pleased with?
“I am most pleased that an awareness in society has been created, particularly in health care and medical services, about the need to see the patient as a fellow human being. Someone who obviously has needs, but also resources, opportunities and experiences. We simply have to take this into account. I think GPCC has succeeded in helping to create this awareness during these nine years.”
“I’m happy with everything (laughing)!”
“But maybe we could have developed a greater degree of collaboration among the disciplines. A good foundation has now been established since there already is an undergraduate elective course called Person-Centeredness in Health and Social Care that is open to all students in Sahlgrenska Academy. We also have a doctoral course on person-centered care philosophy with applicants from throughout Sweden. In this way we hope that the foundation has been laid for further collaboration in practice and research within person-centered health care and medical services.
“Maybe we could have done even more to point out the importance of knowledge created within the university that can be of use to society at large. I am pleased, of course, that we have managed to create an awareness of the importance of this knowledge. But perhaps we, and also the university, could have been more aware of how to develop an infrastructure or model for how research could be useful out in the community. This concerns not only health care research but all knowledge creation within the university. We have begun this work in any case, and there is a model to follow as a result of our work with GPCC Implement, the not-for-profit company we started and that the university owns. But we need further development. I would also like to have brought about more synergy and collaborations with other health care research in the SFO strategic areas that were also established in 2010, for example, but maybe the time has not been ripe for that until now.”
How has GPCC’s work to support various research projects changed over the years?
“Initially I wanted all researchers to feel that they had the opportunity to come with their ideas and thoughts of how they would like to describe or evaluate person-centered care. For that reason we began with an announcement of support for research projects and with a ‘bottom-up’ approach, which was good, but now we need a ‘top-down’ approach, looking at what areas we need to know more about.”
What have been GPCC’s biggest challenges?
“At first person-centered care was a relatively new concept in Sweden, so we had to make the case for it and explain what it was. In 2010 we talked mostly about patient-centered care. But from the beginning we have been very eager to clarify the theoretical basis. For example, we have always had advisers who have been well-grounded in the person-centered philosophy. I am very pleased that we have always adhered to this and been able to say that the person-centered approach in health care and medical services is not a new buzz word, but rather an ethical approach that is more than 2,000 years old.”
What do you have against the word “patient”?
“Nothing. We’re not at all opposed to the word patient. Obviously, a person in contact with health care and medical services is a patient. But by a person-centered approach, we mean that first and foremost we are encountering a fellow human being and everything that is implied in the concept of ‘person.’ That certainly is well established, particularly in the humanities and social sciences, but it was less familiar in fields such as medicine and engineering. It is and has been a challenge, but we feel more strongly than ever that it is important to retain this foundation and ethics that have a long and solid tradition.”
What is needed now to facilitate a transition to more person-centered care?
“At GPCC we have shown in several studies that person-centered care is good for patients and that it produces more effective care. Now we need to know more about the obstacles and opportunities, about how it can be implemented, about the person-centered work method, as they say in Region Västra Götaland. For that reason we are heading two different major projects right now, one at the European and one at the Swedish level. At a European level we are working now on making test environments, known as Living Labs, where we can try out different solutions for working in a people-centered way in the CostCares project. For example, compensation systems, incentives and technical innovations. We have 28 partner countries involved, and we currently have a testing ground under way in Spain.”
“Now we are starting also to develop this type of test environment in Sweden (in Region Västra Götaland and Dalarna) and all regions will be invited to participate in the future. We currently are developing a model for how these Living Labs can work. We are doing this in a collaboration that we call a Person-Centered Patient Public Private Partnership, or PCP4, along with a number of other relevant parties, such as patient and professional organizations, business representatives, academia and industry. The research results we have already attained are being implemented, and then these, too, are being researched, resulting in new research questions that come up. But we can already state that we have come a long way with an awareness of the ethics on which a person-centered approach to health care and medical services is based.”
What are you going to do now?
“In part, I will continue to work with these two projects at the Swedish and European levels. And I have research grants for my own research team, including those from the Swedish Research Council and the Swedish Heart-Lung Foundation, which I will continue to head as a post-retirement professor. So I have funding for research for several years to come and will continue this work. I think this is great fun. I will also participate in Almedalen Week, where we will present PCP4 at Västsvenska Arenan and have a round table discussion about the ethics of person-centered care.”
TEXT AND PHOTO: JEANETTE TENGGREN DURKAN