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

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

Supplementing factual information with patient narratives in the cancer screening context: a qualitative study of acceptability and preferences

Objective To explore people's responses to narrative information in the context of colorectal cancer screening. Design nineteen in-depth interviews were conducted with men and women (aged 45–59). Participants were given two types of colorectal screening information to read: factual and narrative. Participants gave their views on both types of information. Data were analysed using Framework Analysis. Results The most frequent responses to the narrative information were that they were reassuring, made colorectal screening more vivid, participants could relate to the people in the stories and they liked the range of narratives presented. Despite the narrative information being seen as more persuasive by some, this was not regarded as manipulative or negative. Both types of information were seen as equally credible. Participants felt a combination of facts and narratives would be useful when considering an offer of colorectal cancer screening. Conclusion Overall, participants were positive about the addition of narrative information to the currently provided factual information about colorectal cancer screening. Supplementing existing factual information with narrative information may provide participants with a more complete understanding of participation in colorectal cancer screening when considering an offer to be screened

Breast cancer : patient narratives and treatment methods

This thesis concentrates on the treatment of women with breast cancer in the 19th and 20th century. It analyses written published patient narratives linking them with clinical developments. Medical history holds a rich source of information providing the view of the clinician. This includes case reports and case series from one surgeon or one hospital for the earlier period of the study and has progressed to the double blind randomised controlled trial that dominates comparative research today. There is an imbalance in the material available for the analysis of patients’ perceptions of their treatment. The patient view is not represented well in the history of medicine. This thesis attempts to provide a more complete assessment of the developments in breast cancer treatment by including the patient’s view. Three narratives provide an insight into the perception of women who were treated with breast cancer prior to the introduction of anaesthesia and infection control. The novelist, Fanny Burney (1752-1840), underwent a mastectomy in 1811. In a letter to her sister she wrote about her experience providing details of her diagnosis and treatment. In comparison, Emily Gosse (1806-1857) refused a mastectomy for her breast cancer and sought alternative treatment with caustics. Her husband, Phillip Gosse and friend, Anna Shipton, wrote narratives about Emily’s suffering. A third narrative provides the view of a woman with breast cancer who received no treatment and died of metastatic breast cancer; Zelie Martin died in 1877. These narratives were linked to a case report by Lorenz Heister (1683-1758). Heister described the procedure for amputation of the breast in detail. His method prevailed until new scientific developments in surgery such as anaesthesia and infection control improved the short-term survival of patients and enabled surgeons to operate sooner with a greater attention to detail

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

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

Cultivating compassion through analysis of online patient narratives

Photos of male genitalia of Cx. univittatus from South Africa and Portuguese specimens. (PDF 3361 kb

Story in health and social care

This paper offers a brief consideration of how narrative, in the form of people‟s own stories, potentially figures in health and social care provision as part of the impulse towards patient-centred care. The rise of the epistemological legitimacy of patients‟ stories is sketched here. The paper draws upon relevant literature and original writing to consider the ways in which stories can mislead as well as illuminate the process of making individual treatment care plans

Narratives in health and social care: truths in context; truths in contest?

This paper offers a brief consideration of how narrative, in the form of people’s own stories, potentially figures in health and social care provision as part of the impulse towards patient-centred care. The rise of the epistemological legitimacy of patients’ stories is sketched here. The paper draws upon relevant literature and original writing to consider the ways in which stories can mislead as well as illuminate the process of making individual treatment care plans