This week I was privileged to participate in a conference celebrating ten years of digital storytelling at which a book, 'Cultivating Compassion – How digital storytelling is transforming healthcare', was launched.1,2
My reason for attending the conference was primarily to run a workshop on the use of digital stories as a valid source of research evidence. In addition I had a vested interest in the book launch as I had written one of the chapters (Chapter 15: Measuring what counts: digital stories as qualitative data). The conference and book, together, provide such a rich source of inspiration that I felt compelled to use this week's 'Thoughts from the Centre' to illustrate how digital stories can be a force for service transformation.
The idea for the book was the brainchild of Pilgrims Projects (PP), specialists in health and education work-based learning programmes. In 2004 PP founded the Patient Voices Programme, "to bring the voices of all those waiting patiently to be heard to the ambitious enterprise of improving the quality and safety of healthcare". Ten years later, the book presents a collection of views, insights, revelations and observations of those who have told their stories or have used these stories to stimulate leaning and improve healthcare.
The book's contributors comprise an eclectic mix of health policy analysts, social scientists, researchers and higher education specialists, doctors, nurses and other healthcare professionals, and, importantly, patients and carers. The production of the stories, however, relies on PP's skill in using appreciative enquiry and non-judgemental listening techniques. The storytellers are supported and encouraged to let their stories evolve over a number of hours or even days, in a safe none threatening environment. This approach, as the book so eloquently shows, both empowers the storyteller and frees them from the shackles created by their experience.
An ambition for the programme was for patients everywhere to be treated with justice, dignity, humanity, respect and compassion. The Patient Voices approach to digital storytelling has gained support and recognition throughout the international healthcare community. Feedback consistently shows they are valued for their succinctness, emotional power and versatility. Other feedback, conveyed in the book and at the conference, was on the power of personal narratives to "heal, transform, deepen insights, promote understanding and enable reflection".
In the same way that a picture can paint a 1,000 words, throughout history stories have been a central focus of social interaction - creating powerful images that remain with the listener long after the event. Indeed the value of stories is that they engage both sides of people's brains (the factual left hand side and emotional right hand side).
My own journey, exploring the art and science of storytelling and its use as a valid form of qualitative evidence, began in 2005. At the time I was the Director of Health Value for Money Audit at the National Audit Office (NAO) and had just published a national report on reforming NHS Stroke Services.3 In response the Department of Health announced plans to develop a National Stroke Strategy. Given the interest in the report, together we hosted a national conference.4
However, any conference about improving services needs to give a voice to patients and carers. In this instance we needed to acknowledge the impact of different types of stroke and to allow for the difficulties stroke survivors can have in communicating effectively. We also needed to illustrate the key findings in the report. I therefore commissioned PP to develop stories to illustrate the key findings, as seen through the eyes and voices of stroke survivors and their carers. The DVD of stories provided background and context to the conference and attendees were given their own copies to take away. The feedback was extremely positive, including a number of people who subsequently used the stories in education and training sessions.
In total I commissioned three different sets of stories, the second time was not for a conference but was to answer the "so what" question of a very fact based report on the highly emotive issue of neonatal services. Specifically that a high percentage of neonatal service users were mothers-to-be, at high risk of complications because of late or no access to maternity care. Given the report would be examined by the Public Accounts Committee (PAC), we knew that the impact of access needed to be fully appreciated if it was to be addressed effectively.5
Consequently we commissioned PP to work with hard to reach groups to capture their narratives and demonstrate to policy makers the impact poor access was having on services and patient outcomes. The point being that while it can be easy to gloss over statistics, for example a shortage of neonatal nurses or neonatal cots, it is much more difficult to ignore the impact on mothers and babies. In this case the DVD was an insert in the report and at the PAC hearing it was clear that some members had watched the DVD as their questions were clearly influenced by what they had seen and heard.
In reflecting back on the use of digital stories, I consider that they have become part of an 'evidence evolution' which has strengthened the information base, impact and value of research. As this week's conference showed, whether it's using digital storytelling to drive change or simply allowing the stories to speak for themselves, this form of evidence is likely to leave a more lasting impression than most others.
Today, the rise of digital technology and the explosion of health data means patient stories are easier to make and more readily accessible than ever before. The patient voice is also turning the historical imbalance of access to information on its head, with digital stories increasingly used to coach, educate and train people to self-manage their condition and support others with similar conditions. Don't take my word, read the book, listen to the stories and decide for yourself – but be prepared for just how effective digital stories can be in helping to transform services.
Footnotes
1. Cultivating Compassion: digital storytelling and enhanced patient experience. The King's Fund. 3 December 2014.
2. Cultivating Compassion – How digital storytelling is transforming healthcare- See also http://www.kingshampress.com/index.php?route=product/product&product_id=133 :
4. Joining forces to deliver better stroke care November 2006. See also: http://www.nao.org.uk/wp-content/uploads/2005/11/0607_stroke.pdf
5. Caring for vulnerable babies: the reorganization of neonatal services. Session 2007-08 May 2008. See also: http://www.publications.parliament.uk/pa/cm200708/cmselect/cmpubacc/390/390.pdf
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