Value of Treatment: a design journey towards an optimised person centred care model for Europe

Abstract

Introduction: Most healthcare systems in developed countries are considered to be unsustainable given the strong rise in demand of care and the shrinking resources to anticipate this challenge in the coming decades. Radical changes in the provision of care are required to maintain healthcare accessible, affordable, safe and at an acceptable level of quality. Patients with complex needs, such as patients with brain disorders are seen as most vulnerable in the foreseen healthcare challenges. The European Brian Council started in January 2016 a unique coreaction project called ‘Value of Treatment’, with the objective to formulate policy recommendations for future care models, in order to close the treatment gap for brain diseases in Europe. Multiple stakeholders as patients’ representatives, policymakers, industry, relevant professional groups and financiers were involved in the design and executions of this project. Nine multidisciplinary work groups for specific brain diseases were established with a leading role for patients and informal carers. Method: The project consisted of two related work streams: 1 an inventory of needs and key issues from a patient perspective throughout the development of the disease the patient journey, and 2 economic modelling of the treatment as currently provided in contrast with an optimised scenario where the identified treatment gaps and insufficiencies were anticipated. For both the patient needs inventory and the economic modelling, data was used from various European countries and settings. According to service design methodology, the needs and issues from a patient perspective during different disease stages have been collected. This was done for 9 different brain diseases. The relation between identified needs and issues and various care aspects were discussed within a multi-stakeholder workgroups: both from a practical health service and a healthcare system perspective. Typical examples of issues in the ‘cause-and-effect’ discussion were stigma, informal and social care, patient-provider interactions, prevention, interventions and adherence, technology and financial issues. Accordingly, possible solutions were suggested and discussed among the stakeholders to establish consensus. The service design methodology followed an iterative approach various stakeholder consultations to define usual care and an optimised scenario which was further substantiated by a literature review. Economic modelling was performed on those aspects of the patient journey for which the most value of treatment was expected. For each aspect, available evidence based data was included in a two tier Markov model to contrast the costs of the ‘usual’ and the ‘optimised’ care scenario. Results and discussion: The service design approach resulted in a narrative of the patient journey in which needs and issues were addressed and where the alternative care model was illustrated by description of a care-as-usual and an optimised-value-of-treatment scenario. The economic impact of both scenarios was assessed through Markov modelling. Conclusion: The combination of a service design methodology with economic modelling, applied in a patient lead multi-stakeholder setting, proofed to be a practical and inclusive approach to work jointly on the design of future care models in order to close the treatment gap for different brain diseases in Europe.