The Ethical Necessity of Involving Patients in Healthcare Technology
09/07/2024
An Ethics by Design approach is gaining recognition in the innovative field of healthcare technology. This foundational concept emphasises the importance of involving patients and their carers as active participants in the development of technological innovations from the outset, rather than treating them as passive recipients. The creation of the Patient Engagement Forum (PEF) by the ESCORT Project, underscores the critical need for patient inclusion in co-design and co-production methodologies.
The adage “Nihil de nobis, sine nobis” [Nothing about us, without us], which has roots in central European political traditions, encapsulates the essence of this approach. It asserts that no policy should be decided without the direct participation of those affected by it. This principle has guided the feedback and structuring of the ESCORT Consortium's initiatives, ensuring that patient perspectives are integral to the design process. By fostering an environment where patients can actively contribute, the PEF provides a platform for ethical and participatory design, from inception to completion. This democratic involvement is essential for creating useful and effective healthcare solutions.
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Addressing power imbalances within research settings is another crucial aspect of this patient-centric approach. Strategies to promote fair participation and shared ownership of research outcomes are vital for maintaining balance and ensuring that patients' roles in co-design and co-development are secure. This holistic approach to stakeholder engagement highlights the importance of strategic, inclusive communication frameworks that respect the dynamics of stakeholder relationships. It ensures that patients' insights are valued and incorporated, leading to more effective and ethically sound healthcare innovations.
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One specific area where patient engagement has a significant impact is in the adoption of AI wearables. By informing patients about the benefits and functionalities of these devices, and involving them in the development process, misconceptions and fears can be alleviated. This transparency fosters trust and empowers patients to embrace new technologies confidently, which ultimately would lead to better health outcomes. Discussions around critical issues such as data sharing further emphasises the importance of patient involvement, as these conversations help build trust and ensure that the technology aligns with patients' genuine needs and concerns.
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​The Patient Engagement Forum and the ESCORT Project reflect a commitment to ethical, patient-centered healthcare innovation. By prioritising patient involvement, the development process becomes more transparent and responsive, leading to technologies that are not only innovative but also truly beneficial to those they are designed to help.
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