Protecting or Excluding? Ethical Tensions in Integrated Care Research with People with Complex Needs

This perspective paper draws on our experience as a clinician researcher and a patient partner involved in the implementation and evaluation of an integrated care program for people with complex needs. Although an organization actively engaged in integrated care agreed to participate in a research project evaluating implementation, no patient referrals were ultimately received from case managers. Using a real-world vignette, we examine how well-intentioned protective practices within integrated care settings can lead to de facto exclusion from research. We explore the ethical tensions this creates-particularly regarding justice, autonomy, and equity-and outline practical lessons to support more inclusive research practices embedded in integrated care programs.