Nothing about me without me: Co-creating healthcare innovations for people with Parkinson’s disease and their caregivers

• Published in: International journal of integrated care Vol. 22; no. S2; p. 74
• Main Authors: Kapelle, Willanka, Van Halteren, Angelika, Post, Bart, Meinders, Marjan
• Format: Journal Article
• Language: English
• Published: Paterna Ubiquity Press 16.05.2022
• Subjects: Caregivers; Disease; Innovations
• ISSN: 1568-4156; 1568-4156
• DOI: 10.5334/ijic.ICIC21300

IntroductionResearch has increasingly emphasized the importance and necessity to involve patients and their informal caregivers in the development, planning, provision and evaluation of health care innovations. Enabling them to play an active and influential role in the decision-making process by bringing their own lived experience is essential to ensure that new health innovations meet their current needs and preferences, and enhances the excitement and commitment for the innovations. However, there is a lack of a comprehensive guidance on how to engage patients, their informal caregivers and professional caregivers in the co-creation process.Aims Objectives Theory or MethodsThis study seeks to explore the experience of co-creation among people with Parkinson’s Disease, informal and professional caregivers during the design and implementation within two Parkinson-related health care innovations “Care-for-Parkinson” and “Young-and-Parkinson”, and to assess the barriers and facilitators. We will employ a sequential mixed methods approach involving a quantitative survey followed by qualitative in-depth interviews. Moreover, focus group discussions will take place to identify opportunities for improvement in the co-creation process. As the study will be based on participatory action research, insights gained from the study results will directly be shared with and implemented by the innovation team.Highlights or Results or Key FindingsWe present a novel approach for supporting, establishing and evaluating co-creation involving people with Parkinson’s Disease, informal and professional caregivers right from the start of the innovation planning based on an iterative process in which research and implementation system work hand in hand to optimize the co-creation process. Research revealed that current health care systems do not optimally meet the needs of people with chronic diseases, including Parkinson’s Disease. A more personalized care approach is needed in which patients and their caregivers are actively involved in the care management process, resulting in a higher commitment of to self-manage their disease, increased ability to cope with disease symptoms and impact, and better health outcomes. In our study, we will not only ensure that the patient’s perspective is represented, but our aim is also to get the most out of the skills, resources and connections provided by each individual.ConclusionsThere is no single framework for establishing and evaluating co-creation processes. This study will yield important insights into the design of co-creation processes and provide future directions for engaging patients and caregivers during health care innovation. A set of recommendation for co-creating health care innovations will be given.Implications for applicability/transferability sustainability and limitationsThis study seeks to provide a framework for establishing co-creation processes which can be adapted to other settings. Although it will take into account the different innovation contexts, it will ask some flexibility and time investment to fit the framework to one’s own setting.