The Development of Integrated Stroke Care in the Netherlands a Benchmark Study

Introduction: Integrated stroke care in the Netherlands is constantly changing to strive to better care for stroke patients. The aim of this study was to explore if and on what topics integrated stroke care has been improved in the past three years and if stroke services were further developed. Methods: A web based self-assessment instrument, based on the validated Development Model for Integrated Care, was used to collect data. In total 53 coordinators of stroke services completed the questionnaire with 98 elements and four phases of development concerning the organisation of the stroke service. Data were collected in 2012 and 2015. Descriptive-comparative statistics were used to analyse the data. Results: In 2012, stroke services on average had implemented 56 of the 89 elements of integrated care (range 15–88). In 2015 this was increased up to 70 elements on average (range 37–89). In total, stroke services showed development on all clusters of integrated care. In 2015, more stroke services were in further phases of development like in the consolidation and transformation phase and less were in the initiative and design phase. The results show large differences between individual stroke services. Priorities to further develop stroke services changed over the three years of data collection. Conclusions: Based on the assessment instrument, it was shown that stroke services in the Netherlands were further developed in terms of implemented elements of integrated care and their phase of development. This three year comparison showed unique first analyses over time of integrated stroke care in the Netherlands on a large scale. Interesting further questions are to research the outcomes of stroke care in relation to this development, and if benefits on patient level can be assessed

Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics

Background: Patient engagement is becoming more customary in medicine development. However, embedding it in organizational decision-making remains challenging, partly due to lack of agreement on its value and the means to evaluate it. The objective of this project was to develop a monitoring and evaluation framework, with metrics, to demonstrate impact and enhance learning. Methods: A consortium of five patient groups, 15 biopharmaceutical companies and two academic groups iteratively created a framework in a multi-phase participatory process, including analysis of its application in 24 cases. Results: The framework includes six components, with 87 metrics and 15 context factors distributed among (sub)components: (a) Input: expectations, preparations, resources, representativeness of stakeholders; (b) Activities/process: structure, management, interactions, satisfaction; (c) Learnings and changes; (d) Impacts: research relevance, study ethics and inclusiveness, study quality and efficiency, quality of evidence and uptake of products, empowerment, reputation and trust, embedding of patient engagement; (e) Context: policy, institutional, community, decision-making contextual factors. Case study findings show a wide variation in use of metrics. There is no ‘one size fits all’ set of metrics appropriate for every initiative or organization. Presented sample sets of metrics can be tailored to individual situations. Conclusion: Introducing change into any process is best done when the value of that change is clear. This framework allows participants to select what metrics they value and assess to what extent patient engagement has contributed. Patient contribution: Five patient groups were involved in all phases of the study (design, conduct, interpretation of data) and in writing the manuscript

Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards

Purpose: While patient engagement is becoming more customary in developing health products, its monitoring and evaluation to understand processes and enhance impact are challenging. This article describes a patient engagement monitoring and evaluation (PEME) framework, co-created and tailored to the context of community advisory boards (CABs) for rare diseases in Europe. It can be used to stimulate learning and evaluate impacts of engagement activities. Methods: A participatory approach was used in which data collection and analysis were iterative. The process was based on the principles of interactive learning and action and guided by the PEME framework. Data were collected via document analysis, reflection sessions, a questionnaire, and a workshop. Results: The tailored framework consists of a theory of change model with metrics explaining how CABs can reach their objectives. Of 61 identified metrics, 17 metrics for monitoring the patient engagement process and short-term outcomes were selected, and a “menu” for evaluating long-term impacts was created. Example metrics include “Industry representatives’ understanding of patients’ unmet needs;” “Feeling of trust between stakeholders;” and “Feeling of preparedness.” “Alignment of research programs with patients’ needs” was the highest-ranked metric for long-term impact. Conclusions: Findings suggest that process and short-term outcome metrics could be standardized across CABs, whereas long-term impact metrics may need to be tailored to the collaboration from a proposed menu. Accordingly, we recommend that others adapt and refine the PEME framework as appropriate. The next steps include implementing and testing the evaluation framework to stimulate learning and share impacts