Care coordination is necessary but insufficient to fix the health care of these patients

The above title sums up what the Camden programme has showed us when one offers a care coordination programme to people with complex needs. This ‘superutilizer’ intervention, which aimed to reduce spending and to improve health care quality among patients with very high use of health care services, did not result in lower readmission rates among patients randomly assigned to the five-year lasting programme than among those who received usual care. Despite the evaluation of the Camden programme did not tell why the results are disappointing, some experts did when asked for their opinion. First, care coordination should no longer be offered as a one size fits all programme to those in need. Second, care coordination for patients with very high use of health care services should go beyond health care to include other critical needs, including housing and legal support. Third, offering care coordination without fixing the system that causes fragmentation from the start is unsustainable. And finally, not preventing people to develop super complex needs is not only ethically debatable but also puts an unnecessary burden on a system and makes it even more hard to provide support to the individuals under that system. Not mentioned but certainly useful to consider, is the active involve of end-users of care coordination programmes from start till finish. The why-question remains highly relevant when developing, testing, evaluation, and implementing care coordination programmes. This issue of the International Journal of Care Coordination offers a most interesting mix of papers dealing with this question from different angles. In light of the above, the discussion and opinion papers by Dessers and Mohr and Kumpunen et al. are highly useful to perhaps recalibrate our expectations and mindset about how to develop, evaluate and implement care coordination in real life settings. Dessers and Mohr first discuss what care ecosystems are and how they can be defined before they describe the possibilities and opportunities that come when viewing care coordination through an ecosystem lens. Moreover, they draw their lessons from an extensive study of 15 care ecosystem cases from seven different countries. In explaining why integrated care initiatives do not always live up to their expectations, Kumpunen et al. tested three different hypotheses among 50 experts: (1) problems with the model; (2) problems of implementation; (3) problems of evaluation. The experts did not rule out any of the three hypotheses. Given that evaluating integrated care is a skilled task, an advisory service is recommended to support local systems planning evaluations. The study by Prusaczyk et al. reports distinct patterns in the delivery of transitional care for patients with and without dementia and explains that in developing effective interventions for dementia patients and increasing intervention uptake, one needs to understand the current delivery process of transitional care. To assess the implementation of patient involvement in the co-creation of care pathways of Sarcoma and GIST, Petit-Steeghs et al. collected data both from patients and health professionals. It was found that the co-creation process encountered several barriers, including limited opportunities to overcome patients’ knowledge gaps on medical services, limited time, and uncertainties about responsibilities. By evaluating the effectiveness of stakeholder engagement on a digital platform in the Netherlands, Toninic et al. show how such a platform for the co-creation of health care innovations can be further improved to support potentially high-impact care innovations from an early phase. Finally, an example of taking a broader lens when looking at the coordination of services is offered by Towe et al. In evaluating pre-data integration for health information technologies to share patient and housing data for improving the treatment of patients with HIV in the United States of America, they identified several essential activities that require consideration, including the identification of partners, data integration model, and functionality selection. Being aware of these factors may help to navigate the barriers when exchanging data.