A check list to aid patient/carer memory recall within the medical appointment: an action design research journey

Abstract

The main nexus of communication between the patient/carer and the doctor is the medical appointment. The primary aim of which is arriving at a correct decision/diagnosis via information elicited from the patient/carer by the doctor. This bi-directional conversation regarding the patients’ medical history (termed the elicitation phase), necessitates the retrieval of data from the patients/carers long-term declarative memory. Unfortunately, recollection for medical history, like other modes of autobiographical memory, tends to be defective, incomplete, and erroneous. Additionally, the ability of the patient/carer to recall (at a later date) what has occurred within the elucidation/explanatory phase of a medical appointment is also quite problematic. Such memory recall/information retrieval issues give rise to numerous pernicious effects, more especially, for the patient. Taking an Action Design Research approach, the artefact designed, built, and evaluated to address the problem of poor memory recall is a pretotype (a paper-based prototype) in the form of a check list. The researcher in this study, a 48-year Cystic Fibrosis patient (who has experienced the problem of poor memory recall within his own medical appointments), decided to embark on a quest to ameliorate or remedy the problem. His practice inspired investigation became driven by the following motivation: How might we augment Cystic Fibrosis (CF) patient/carer memory recall/ information retrieval within the elicitation phase and elucidation phase of the medical appointment? Rigorous evaluation by CF patients, carers and respiratory clinicians’ points to the artefact’s validity and shows its contribution to practice, by facilitating the capture of specific CF related data collection before and during a medical appointment, enhancing a CF patients/carers ability to recall key clinical data within and after the medical appointment. Giving rise to reduced stress levels and an increased sense of empowerment for CF patients/carers within the medical appointment. Moreover, the designed check list is a new discursive template that facilitates a new patient-led approach to tackling and understanding the problem of flawed memory recall within the medical appointments. This study contributes to knowledge research by providing a representative set of 10 design principles for the design of a check list for use by patients/carers to aid memory recall. The most novel of which is the unpacking of long-term declarative memory into its components, where the check list design actually maps to “aid” the memory type drawn upon by the patient/carer within the medical appointment. The result being more effective memory recall/information retrieval. In addition, two conceptual models emerged: 1) a model of information retrieval/memory recall within the elicitation phase of the medical appointment, augmenting our comprehension of this phase of the medical encounter for all stakeholders; and 2) a visualisation/model of reflection within the context of the ADR, which depicts the stages of exploration required to genuinely advance our understanding of a problem, dissecting viewpoints further, gaining deeper insights into phenomena, and developing our problem definitions. As part of the ADR journey the check list (artefact) has been professionally produced in the form of a booklet, which has been adopted and distributed by CF Ireland to all CF patients/carers in Ireland. Furthermore, the NHS began distributing the booklet in early 2020, starting with the Royal London Children’s Hospital. Since then, it has gone to several countries across the world for review/evaluation by their relevant CF bodies