The other side of medicine: Learning from online patient stories

This blog post is co-authored by Dr Kay Leedham-Green, Medical Education Fellow, Dr Wing May Kong, Head of Ethics and Law, Undergraduate Medicine, Imperial College, and James Munro, CEO, Care Opinion..

A group of 19 medical students at Imperial College, University of London, have been learning from patient narratives on Care Opinion as part of their intercalated BSc in Humanities, Philosophy and Law (HPL). The stories people share, in giving feedback online, also create a rich and diverse resource of experiences for study and learning. They highlight aspects of clinical care that may be neglected in traditional approaches to medical education or health care research.

In October 2019 we ran a one-day workshop for our students. They were taught the principles of narrative research (functional, linguistic, sociological and critical) and introduced to the Care Opinion website. They heard about advanced features of the site, allowing them to identify stories relating to specific topics such as dementia care, termination of pregnancy or chronic pain; or to areas of practice such as communication, consent or patient safety; or even emotions such as comfort, grief or gratitude.

Students began simply by browsing patient stories in small groups, exploring using topic, location or specialty tags, word search and criticality score. Each group identified a topic of interest which they shared and discussed with the whole class.

The main part of the day involved students working in small groups to create a presentation justifying their topic, their strategy for interrogating the dataset, their criteria for curating a small number of high impact narratives, an initial analysis of one or two narratives, and how the selected stories linked to wider themes in HPL.

In the second half of the day each team presented their work to the whole group, with questions and formative feedback from a clinical/academic panel. Their summative assessment was a 3,500-word essay.

As an indication of the learning that happened during the day, the formative presentations included topics such as paternalism, patient vs institutional perspectives of disease, understanding the personal values of patients and families in end of life care, autonomy and informed consent, fibromyalgia, and autonomy and sensitivity in pregnancy loss.

Working with Care Opinion narratives opened my eyes to the other side of medicine, the side of the patient

Adina Smith, one of the students on the course, said: “By analysing the narratives using techniques taught in the workshop, I was able to gain a better understanding of the importance of viewing disease from both patient and clinician perspectives to enable a more holistic approach to medical practice.”

Another student, John Humm, said: “I found Care Opinion to be an easy to use website featuring a diverse range of entries. This allowed me, and I think every student on the course, to take their essay in a unique direction addressing topics within HPL which they are passionate about.”

Students often come to medicine having taken three sciences at A-level and enjoy rediscovering a more nuanced form of academic practice that allows for criticality and construction of meaning through careful argumentation. Medical degrees have a high biomedical science content, despite clinical practice being arguably more of a team-based social science, suffused with humanity and suffering. Our project aims to support students in bridging these two paradigms in the interests of patient care.

So far, these students have read over 2,000 patient stories, many of which they will have curated, analysed and presented as part of their degree. We hope to feature a selection of their essays on this blog in due course.

And we hope that people sharing experiences on Care Opinion will be heartened by the continuing impact that their stories are having on the education of future healthcare professionals. As student Rachel Ruck noted: “Working with Care Opinion narratives opened my eyes to the other side of medicine, the side of the patient.”

For more information on this project please contact: Dr Wing May Kong, Head of Ethics and Law, Undergraduate Medicine, Imperial College w.kong@imperial.ac.uk

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A BMJ blog stories in medical education: https://blogs.bmj.com/bmj/2019/07/08/the-transformative-power-of-patient-narratives-in-healthcare-education/