Patient involvement through healthcare simulation: a design-based study

Introduction: There are increasing calls for patient-centred, compassionate healthcare, not least in reports into recent scandals. In addressing this need, medical educators are beginning to recognise the importance of patient voices and experiences. In simulation, work includes the Patient Driven modality which allows patients to develop materials to embed personal storylines in high fidelity simulation scenarios. This paper reports on developmental features of a Patient Driven simulation course in light of related educational literature. Objectives: The aim of the work was to ensure a) the Patient Driven course is grounded on strong educational principles; and b) to inform future development of medical simulation which places patients at the heart of design. Material/Patients and Methods or Expected Audience: We employed a design-based methodology.This is a holistic, exploratory approach with a formative intent. Clinical, academic and patient faculty met in structured sessions to review course learning aims, methods, modalities and reported outcomes. The design-research was supplemented by a cross-database, systematic review of English language literature using linked terms (e.g. patient involvement; medical simulation) to explore pedagogical issues, benefits and challenges. Results / Requirements/Specific needs: Patients were motivated to improve the patient experience for others and to promote safe, effective personal care. Whilst the process was emotionally challenging, seeing their experiences in ‘live’ simulation lead to increased self-worth through ‘being listened to’, and empowerment through depth of involvement. Clinicians noted that patient stories were valuable in gaining understanding, and in developing tolerance of ambiguity inherent in differing perspectives on care. Review data show a range of patient narrative use, from being peripheral (considered superficially by educators) to being integral (leading to a transformative learning experience). Others have reported direct contact as being beneficial in simulation and in workshops and interactive exercises. However this is relatively time consuming and expensive. Alternatives include ‘digital stories’ where patient accounts are embedded in online discussion forums. Benefits to patients include finding ‘closure’; this is dependent on reassurance from faculty and avoiding the perception of tokenistic involvement. Expectations of learners are important if educational impact is to be maximized, especially with regard to materials that may allow for subjective interpretations of ‘successful’ outcomes.