Stories give people permission to talk – they give staff, patients and their families a voice that touches everyone who listens. Last week we published our report Time to care which highlights the importance of supporting the physical and mental wellbeing of hospital staff in order to ensure a sustainable and effective workforce. This Thursday I attended an inspiring event called ‘The DNA of Care’, a shared learning event hosted by NHS England. The event showcased a series of digital stories developed by Patient Voices and an evaluation of how digital stories are being used to provide a voice to NHS staff as part of their DNA of Care project.1 During the event I was struck by the power of staff stories and how these stories could help tackle some of the challenges identified in our research. I have long been a strong advocate of the power of digital stories. This week’s blog shares some of my insights from this event and why I believe digital stories are not only incredibly impactful and cathartic for the people involved in telling their stories, but can help others understand the amazing courage, resilience and compassion of NHS staff.
The DNA of care
Last year I was also privileged to be invited to the inaugural DNA of Care event which launched the DNA of Care Project. Since then, Patient Voices have been working on evaluating the impact of the staff stories presented at that inaugural event while continuing to make new stories with staff and patients across the NHS.2 The stories presented are incredibly powerful and demonstrate the resilience and compassion of staff in their professional and personal lives. Moreover, the stories teach compassion and most importantly, self-compassion. The many examples of these staff and also patient stories can be found on the Patient Voices webpage.
Staff and patient experience are two sides of the same coin and the intertwined relationship between patient care and staff well-being has been likened to the DNA double helix; staff and patient relationships form the DNA of care. What is evident from all of these stories is that NHS staff carry within themselves a vast reservoir of expertise and experience and in sharing their otherwise unspoken, unheard stories of care and caring, their stories are contributing powerfully to transforming care delivery.
Patient Voices was the brainchild of Pilgrims Projects (PP) who are specialists in health and education work-based learning programmes. In 2003, 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”. Since then, Patient Voices have been using reflective digital storytelling to unearth first-person stories that deliver compelling and motivating insight helping to drive organisational change, growth and success.
Fast forward to 2016, when NHS England decided to fund a series of Patient Voices workshops in order for staff to create their own digital stories. The aim being to use these stories to help other people understand the reality of working in healthcare and promote learning from these experiences, both good and bad; and contribute to making healthcare safer, more dignified, more humane and more compassionate for everyone. The stories involve everything from critical incidents and never-events; clinicians in distress (wounded healers); and staff who are also carers.
The feedback from story tellers time and again demonstrate how the act of story-telling was life changing and enabled them to take back control, and promote the healing of themselves and their families. These stories are also widely used to improve care across healthcare, and support the ‘business case’ for patient-centred transformation of care.
Between 2005 and 2009, I commissioned PP to develop patient and carer stories to underpin a series of Value for Money audit reports that I led while working for the National Audit Office. These included reports on Stroke, Neonatal and End of life care services. DVDs containing these digital stories were included with the reports and shared with the Public Accounts Committee, conference delegates and others involved in clinical care and education. The stories illuminated more powerfully than the written word, the key findings, giving people a more in-depth understanding of the conditions, experiences and lives of the people who had shared their stories.
Ever since my first involvement, I have been an advocate of the power of digital stories. For this reason I also contributed to a book developed by Patient Voices called ‘Cultivating Compassion: How digital storytelling is transforming healthcare’ which was launched in 2014 and which I covered in a blog at the time.3 The book has recently been updated, including my own chapter, and was re-launched at the end of the DNA of Care event. It provides a rich source of inspiration and demonstrates how digital stories can be a force for service transformation.
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, highlights the power of personal narratives to ‘heal, transform, deepen insights, promote understanding and enable reflection’.
In reflecting back on the use of digital stories, I am convinced that they should be seen as an integral part of an 'evidence evolution' strengthening the information base, impact and value of research. As the DNA of Care event 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 continues to turn 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 – and be prepared for just how effective digital stories can be in helping to transform services.