Patient narrative and experience are too often ignored as a resource for improving educational and regulatory practices, say Rebecca Baines, Charlotte Denniston, and James Munro

The narratives we share about ourselves and others are an integral part of our everyday lives. They are the medium through which we communicate, celebrate, and educate, providing a common currency that has the potential to be accessible to all. However, despite the repeated sharing of health and illness accounts around the world on a daily basis, the meaningful involvement of patient narratives in the education and regulation of healthcare professionals is perhaps yet to be fully realised.  

While there are some clear areas of excellence, there are also some clear areas of resistance to working with patient narratives. But why? What is the perceived risk of listening to patient voices for educational purposes? What power do patient voices have when expressed in their own, unaltered form and language?

We feel that patient voices should be equal to those of others involved in the education and regulation of healthcare professionals. Perhaps some of the expressed resistance is due to underlying fears of unfamiliarity and change. By its very nature, the active inclusion of patient narratives disrupts traditional power hierarchies that have permeated healthcare education and regulation for decades. By respecting patient narratives as an equal source of knowledge and evidence, the passive “outsider,” a role traditionally held by patients, becomes an active educator to the elite “insider,” but only if permitted…

Previous definitions of educator, knowledge creator and receiver may also maintain feelings of resistance towards the inclusion of patient narratives in the education and regulation of healthcare professionals. This raises the important questions of what is an educator, and who is positioned, or permitted to be in this role? Are our current definitions fit for purpose? Are we working in a way that is restrictive, preventative, empowering or emancipatory? 

These are important questions that we must critically consider as the benefits of listening to patient voices are well described. For example, patient narratives can provide unique insight into issues that are often unachievable through other means; they can inspire patient-centred care, pride, and confidence, they can help celebrate good practice, foster inter-professional learning, develop professional identities, promote creativity, reinforce professional ethics and encourage self-reflection, compassion and understanding among many other things. Few would deny the benefit of such attributes in a healthcare professional. So how can we better work with patient narratives in healthcare education and regulation to achieve these outcomes?

Firstly, we should not deny the subjective nature of patient narratives; it is not a weakness, but a strength. Raw and authentic patient narratives inject reality, humour, passion and life into an, at times, alienating environment for both patients and healthcare professionals. Some narratives may challenge previously accepted norms, or force us to consider alternative perspectives. The diversity of narratives should therefore be embraced as opposed to being used as a justification for their exclusion. Each is unique, each contains a multitude of learning opportunities. Some contain lessons of celebration, others contain uncomfortable truths. Some contain messages that should never have to be retold. 

Secondly, we should strive to improve the opportunity and accessibility of narrative provision and receipt for both patients and educators. Websites such as Care Opinion are increasingly addressing this issue but more can be done. Opportunities to provide or receive patient narratives do not need to be formal. Begin with a simple conversation, an inviting question that enables people to create their own narrative in their own form—how was your experience? What mattered to you?

Finally, we should seek to develop a culture of value, acceptance and transparency. In a world driven by data, it is important to remember that narratives are a form of evidence. They are not “soft.” They are a constructed version of reality, a permanent reminder of an encounter that left a lasting impression. It’s vitally important that they are treated with the value and respect that they deserve.

In conclusion, we all have a narrative to tell. Each narrative has the potential to strengthen and transform our educational and regulatory practices. While not always simple in their collection, patient narratives are one of the most powerful, yet overlooked resources in the education and regulation of healthcare professionals. However, we have an opportunity to change this…Let’s embrace it. After all, if we do not learn from one another, how can we be expected to work with one another? 

“In the end, we’ll all become stories.”
Margaret Atwood.

Has your own journey in including patient narratives in the education and regulation of healthcare professionals already begun? To share your own experiences please use the hashtag #patientnarratives

 

Rebecca Baines is a research associate and PhD student at the University of Plymouth.
Twitter: @Rebecca_Baines_
Competing interests: None declared

 

Charlotte Denniston is a lecturer in work integrated learning in the Department of Medical Education, Melbourne Medical School, University of Melbourne.
Twitter: @charlotden
Competing interests: None declared

 

James Munro is CEO of Care Opinion CIC, a non-profit public feedback platform for health and social care services.
Twitter: @jamesfm55
Competing interests: Care Opinion CIC receives subscriptions from health/care services in return for online services, training and support.

The authors would also like to thank, and acknowledge John Donovan for reviewing this piece.