Project: The ties that bind fragmented care – best practices definitions and measures of continuity of care

Continuity in healthcare is considered to create safe and effective healthcare. The problem is that people look different on what continuity means depending on whether you are patient, healthcare professional or healthcare provider. Then it is also difficult to measure and evaluate. The project aims at investigating healthcare systems and developing instruments that can objectively measure and follow over time if the patient has received good healthcare or not.

Project information

Project manager
Mirjam Ekstedt
Other project members
Linnaeus University: Elizabeth Hanson, Kristofer Årestedt, Marie Kirsebom, Carina Elmqvist, Linda Ljungholm
Linköping University: Marika Wenemark
Umeå University: Dean Carsson, Anette Edin-Liljegren
Karolinska Institutet: Maria Flink, Johan Hansson Anna Dahlgren
International Expert Group from: Norway, Denmark, The Netherlands, UK, Canada, and Australia
Participating organizations
Linnaeus University
Centrum för Glesbygdsmedicin, Storuman, Västerbottens Läns Landsting, Vårdbolaget TioHundra AB, Norrtälje, Region Kronoberg, Nationellt Kompetenscentrum för anhöriga, Anhörigas Riksförbund, Diabetesförbundet, Hjärt- och lungsjukas förening
2018 -2020
Caring Science and Health and Caring Sciences (Department of Health and Caring Sciences, Faculty of Health and Life Sciences)

More about the project:

Swedish healthcare is characterized by specialization, professionalization and decentralization of power and responsibilities, which have contributed to a strong differentiation, with division of services and roles. To deal with this, multiple local attempts and wide-spread top-down initiatives have been launched, such as chains of care for specific patient groups. The few reported studies of comprehensive integration models have not been able to establish with any certainty that outcomes and costs are improved. Still, there is no consensus about the meaning of continuity, and no accurate measures are available.

The proposed participatory research is a collaboration between a multidisciplinary team of researchers at Linnaeus University, Karolinska Institutet, Umeå University and Linköping University, representatives for patients and relatives, and professional groups and stakeholders at three geographically distinct sites, selected to cover urban and rural areas throughout study execution.

The project includes three interconnected work packages, WPs. In WP1, the best-practice models of integrated care will be explored at micro-, meso- and macro-levels, using a case study design. These findings will guide a three-round Delphi process (WP2), with a panel including patients, family caregivers, and professionals. The conceptualization will be used to develop a measure of continuity of care (WP3) that will be adapted and tested among patients. The results will give guidance for best practices on a continuity of care that meets the future challenges of providing sustainable and equal care to the people who need it most.

The project is part of the research in the research group Systems Security and Patient Participation.