Participation of patients with chronic diseases in integrated care – a systematic review

Abstract

Introduction: Integrated care is a valuable approach in creating a health care system that addresses the complex needs of people with chronic diseases. For integrated care to be successful, patient participation, i.e. the involvement of patients in decision making and active participation in care activities in partnership with professionals, is crucial. Patient participation can occur at the micro (i.e., individual), meso (i.e., organizational) and macro (i.e., policy) level of care. At all levels, participation can range from purely one-sided information exchange provided by professionals, to consultation of patients, to collaboration (also labelled as co-creation) where professionals and patients share power and responsibility in making decisions. While integration and patient participation appear to be two guiding principles in reorganizing health care systems, so far little is known on the actual contribution of patients with chronic diseases to the organization of integrated care. Hence, the objective of this study is to systematically review studies on patient participation in the development and evaluation of integrated care. Method: PubMed (Medline) and Web of Science databases were consulted to conduct a systematic literature review. We searched for papers on patient participation, integrated care and chronic diseases that were published between January 2003 and December 2016. After categorizing the general focus of the articles, the levels and degrees of patient participation that were described in the studies were reviewed. Results: As for the focus of the articles, most papers address patient participation in the creation and/or evaluation of integrated care initiatives or ICT facilitators to achieve integrated care. A small group of articles explores the perspectives of patients on integrated services and policies. Regarding the level of care in which patients are involved, most studies refer to patient participation at the meso level. Also, in some studies participation at the macro level is described. Concerning the degree of participation, in the majority of articles patients are consulted to express their views, yet this infrequently leads to the actual co-creation of integrated care initiatives. Discussion: Despite the importance of patient co-creation that has been articulated by the WHO, actual participation activities and practices in integrated care often comprise a limited degree of patient collaboration in decision making. Conclusion: In the field of research into integrated care, current practices of integrated care provide little opportunity for impact of patients with chronic diseases to collaborate in decision making on (re)designing and changing health care systems. Lessons learned: There appears to be a gap between the importance that has been laid on patient participation by current health care policies and the actual implementation of this principle in integrated care initiatives and policies. Limitations: There are a myriad of terminologies that are used to refer to (strategies of) integrated care and patient participation, which impeded clear guidance in the literature search. Further, by broadening the search strategy to the grey literature, additional relevant publications might have been detected. Suggestions for future research: Future studies could focus on detecting facilitators and barriers to achieve patient participation in integrated care.