An online narrative archive of service user experiences to support the education of undergraduate physiotherapy and social work students in North East England: An evaluation study.

Background: Patient narratives are a viable process for patients to contribute to the education of future health professionals and social workers. Narratives can facilitate a deeper understanding of the self and others through self-reflection and encourage transformative learning among students. Increasingly, accounts of health and care are available online but their use in health and social work education requires evaluation. This study explored the experiences of stakeholders who contributed to, developed and used an online narrative archive, which was developed in collaboration with five universities and healthcare providers in the North East of England (CETL4HealthNE). Methods: Realistic evaluation principles were used to underpin data collection, which consisted of semi-structured interviews, a focus group and observations of educators using narrative resources in teaching sessions with different professional groups in two universities. Participants included educators, storytellers, narrative interviewers, students and a transcriber. Data were analysed thematically by two researchers and verified by a third researcher. Findings: Stakeholders reported that listening to patient narratives was challenging. The process of contributing the story was a positive cathartic experience for patients, and the powerful storyteller voice often evoked empathy. Students commented on the ability of the online audio-visual narratives to enable them to see the patient holistically, and educators reported that narratives provided a means to introduce sensitive topics. Conclusions: The use of a locally generated online narrative archive is beneficial for storytellers, students and educators, providing an opportunity to influence healthcare professional training. Care needs to be taken when exposing individuals to potentially sensitive narratives

To Live Means to Suffer: Exploring the Identity of Chronic Pain Conditions

This paper examines the necessary identity reconstruction for chronic pain patients through the use of illness narratives. The biographical interruption of a chronic illness, partnered with the patients’ inability to discuss embodiment and pain wholly (because language failures to capture the essence of pain and suffering) creates a devastating chasm between the world of the healthy and the world of the sick. Psychosomatic pain, and illnesses without diagnosis, are all the more divisive conditions, because these factors rob the patient further, disallowing them from constructing even an illness identity. Utilizing published patient interviews, sociological and anthropological texts, as well as illness narratives from authors such as Joan Didion, the first half of this paper explores the discourse surrounding chronic pain, reconciling it with the author’s own experience as a chronic pain patient. The second half of the paper includes interviews conducted by the author, and a discussion of the relationship between these illness narratives and the sociological expectations of the chronically ill. Through these interviews, texts, and narratives, the author explores the implications of chronic pain, which are unquantifiable. Chronic pain is a condition unto itself because it expands beyond the body, problematizing the lives of its victims, and requiring a revision of their identities. From these interviews, it is evident that illness narratives are powerful not because of the specifics of a patient’s pain, but due to the life trajectory interrupted by said pain. Ask chronic pain patients to tell you about their pain and they instead tell you about their lives—ruined vacations, lost friendships—“pain environed in a concrete world,” (Kleinman, 1988)

A Neural Attention Model for Categorizing Patient Safety Events

Medical errors are leading causes of death in the US and as such, prevention of these errors is paramount to promoting health care. Patient Safety Event reports are narratives describing potential adverse events to the patients and are important in identifying and preventing medical errors. We present a neural network architecture for identifying the type of safety events which is the first step in understanding these narratives. Our proposed model is based on a soft neural attention model to improve the effectiveness of encoding long sequences. Empirical results on two large-scale real-world datasets of patient safety reports demonstrate the effectiveness of our method with significant improvements over existing methods.Comment: ECIR 201

Wake up, wake up! It's me! It's my life! patient narratives on person-centeredness in the integrated care context: a qualitative study

Person-centered care emphasizes a holistic, humanistic approach that puts patients first, at the center of medical care. Person-centeredness is also considered a core element of integrated care. Yet typologies of integrated care mainly describe how patients fit within integrated services, rather than how services fit into the patient's world. Patient-centeredness has been commonly defined through physician's behaviors aimed at delivering patient-centered care. Yet, it is unclear how 'person-centeredness' is realized in integrated care through the patient voice. We aimed to explore patient narratives of person-centeredness in the integrated care context

Patient narratives – a still undervalued resource for healthcare improvement

In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning

Narratives of Aging and Patient Activation

I highlight the generally negative social discourse on aging in the United States, which is often characterized by themes of marginalization and stagnation, and I advocate for a more developmental view. I propose a conceptual framework of social constructionism to consider how the intersection between social discourse and personal narrative regarding aging might influence older adults’ patient activation; Interpretative Phenomenological Analysis (IPA) is an appropriate qualitative methodology through which to understand these relational dynamics. Key constructs are defined and evidentiary, social justice, and pragmatic rationales are provided. In a discussion of the application to clinical psychology I suggests that how the “baby boomer” generation—the largest birth cohort of the 20th century—navigate older adulthood will have social implications in how subsequent generations experience aging. Clinical intervention implications are explored, as are several intersections, including relationship, diversity, ethics, and developmental psychology. Themes of distancing one’s self from an aging peer group; ongoing personal development; staying active, both mentally and physically; and acceptance emerged from conversations with ten older adults ages 60 to 68

Mining clinical relationships from patient narratives

Background The Clinical E-Science Framework (CLEF) project has built a system to extract clinically significant information from the textual component of medical records in order to support clinical research, evidence-based healthcare and genotype-meets-phenotype informatics. One part of this system is the identification of relationships between clinically important entities in the text. Typical approaches to relationship extraction in this domain have used full parses, domain-specific grammars, and large knowledge bases encoding domain knowledge. In other areas of biomedical NLP, statistical machine learning (ML) approaches are now routinely applied to relationship extraction. We report on the novel application of these statistical techniques to the extraction of clinical relationships. Results We have designed and implemented an ML-based system for relation extraction, using support vector machines, and trained and tested it on a corpus of oncology narratives hand-annotated with clinically important relationships. Over a class of seven relation types, the system achieves an average F1 score of 72%, only slightly behind an indicative measure of human inter annotator agreement on the same task. We investigate the effectiveness of different features for this task, how extraction performance varies between inter- and intra-sentential relationships, and examine the amount of training data needed to learn various relationships. Conclusion We have shown that it is possible to extract important clinical relationships from text, using supervised statistical ML techniques, at levels of accuracy approaching those of human annotators. Given the importance of relation extraction as an enabling technology for text mining and given also the ready adaptability of systems based on our supervised learning approach to other clinical relationship extraction tasks, this result has significance for clinical text mining more generally, though further work to confirm our encouraging results should be carried out on a larger sample of narratives and relationship types

Narratives in student nurses' knowledge development : A hermeneutical research study

Author's accepted version (post-print).Available from 07/02/2020.Background: Knowledge development, and how student nurses learn to be nurses, is essential in nurse education and has implications for quality of care. There is a lack of research concerning how student nurses' knowledge development is expressed through narratives and how they deal with challenges in patient situations in professional learning. Objectives: To clarify the usefulness of narratives in student nurses' knowledge development and the narratives implications for learning in clinical training. Design and methods: The study has a qualitative design with field methodology. Data consisted of observations, interviews, and fieldnotes. The data was analysed, and narratives were developed using Gadamer's hermeneutical circle. Participants and settings: Seven first- and second-year student nurses from a bachelor programme were closely followed in different patient situations during their eight weeks of clinical studies in nursing homes. Results: In a sample narrative, a student nurse explained how she reflected on her actions and decisions made when she shielded a patient who was in a difficult situation. Conclusion: Narratives are useful for the development of student nurses' knowledge in clinical training. Student nurses' decisions and actions in the patient situation are made evident through narratives. Nursing educators and student nurses awareness of the relevance of this knowledge for understanding student nurses learning processes is of importance in professional education. Nursing educators should be more open minded to narratives as a starting point for reflection. Increased use of narratives in professional education will contribute to development of knowledge so that student nurses can manage to face patient situations as long as the situation themselves demands. Areas for further studies are other professional educations, for examples, doctor, physiotherapist, and occupational therapist.acceptedVersio