Digital Patient Stories for Service Improvement

Swansea Bay University Health Board

Contact: Prue Thimbleby – Prue.thimbleby@wales.nhs.uk

Organisation

Swansea Bay University Health Board is one of the seven NHS Health Boards in Wales. We have over 12K staff delivering all primary and secondary health care, including mental health care, to a population of 400+K in South Wales. The Health Board is divided into 5 delivery units: the 3 main hospitals, Community & Primary Care, and Mental Health & Learning Disabilities. We cover the geographical area of Swansea and Neath and Port Talbot councils.

The patient story work in the Health Board is led by the Arts in Health coordinator (Prue Thimbleby) working closely with the Deputy Director of Nursing and Patient Experience (Cathy Dowling) and the Patient Experience Manager (Marcia Buchanan).

General Summary

Winner – Turning it Around PENNA 2019

We improve services through listening to our patients and taking action in response to their stories.

  • We use digital storytelling as our methodology.
  • A digital story is a 1st person voice recording put together with images to create a 2 to 5 minute video.
  • The process of making a story is deep listening and brings profound resolution to the teller. The completed story creates empathy in the listener – thus leveraging changes of attitudes and practice.
  • The patient remains the director of their story, they own the story and do as much of the editing and presenting the story as they wish to.
  • We train and support frontline staff to record patient’s good and bad experiences and then create action plans to improve services. We have built an intranet site where staff can access the governance documents and a library of stories. Stories are used widely in meetings, training and business cases. We can demonstrate significant service improvements as a result.
  • We are training a network of story facilitators across Wales and plan to build an all-Wales library of stories so that we can make our patient’s voices central to our learning.
  • Health providers in England are also asking for training.

Rationale

In 2012 the Health Board appointed an Arts in Health Coordinator who had a background in digital storytelling. At that stage there was a very large backlog of complaints and the Arts coordinator was asked to make digital stories with the complainants. It proved to be a very effective way of patients finding resolution after many years of waiting. One woman said ‘the night after I had told my story was the first time I slept through the night in 22 years’.

At the same time the Board of Directors meetings were starting with patient stories, but they were often poor quality and time consuming – ranging from power points to transcriptions to patients telling in person. Gradually some of the digital stories were used at board meetings and the Board of Directors said then that they wanted all stories to be in the digital story format.

At this point (2017) a new Deputy Director of Nursing and Patient Experience was appointed and saw the potential for these stories to lead service improvement. She worked with the Arts coordinator and the Patient Experience Manager to take this early initiative and turn it into a robust programme which delivers real service improvement through listening to patients and championing their voices.

Planning

By 2017 we had been making digital patient stories and training staff for five years. Many stories had led to impact – they had stopped cases escalating to court, transformed incident reporting, improved end of life care, and provided patient and staff views on service issues such as perinatal mental health. But the governance was not robust and the training of frontline staff to make stories was proving to be ineffective.

The Deputy Director of Nursing and Patient Experience set up and led a Task and Finish group consisting of the Arts in Health Coordinator, the Head of Risk and Legal services, Head of Complaints and the Patient Experience Manager to oversee the development of the strategy and governance for digital patient storytelling.

Together we wrote the standard operating procedures, created an online sharing site for governance documents and forms, and built a library of stories. The forms include a visual capacity and consent toolkit for using with patients with reduced capacity.

We did a survey of all staff who had been trained over 2014-17 and discovered that staff were too busy to transfer the training into practice and soon lost the knowledge about the software used to make the videos. So we implemented changes to the training – getting it accredited at MA level by the University of South Wales. We now require a first patient story to be submitted as part of the accreditation.

Two years later, there are now 24 story facilitators in frontline services – especially in PALs team – who listen deeply to patients, record and edit their stories and make sure that other staff hear them in Quality & Safety meetings, Board meetings, ward level meetings and at training events.

When each story is initiated, senior staff are asked to think clearly about the possible benefits and who will listen to the story. The Unit Nurse Director is responsible for ensuring that an action plan is created and the actions are completed. The story is then uploaded to the holding point in the online library; the patent experience team listen to all the stories, provide feedback to the facilitator and notify any corporate managers of new stories that are relevant to their work.

The work is growing fast.

  • Within SBHB we are nurturing new storytellers through a story facilitator’s forum with regular teaching input, peer support, trouble shooting and gathering feedback.
  • We are running internal training courses three times a year.
  • We are focusing on supporting staff to transfer training into practice.
  • There is a waiting list of external people/trusts who want training from across Wales and England.
  • The Department of Health in London has asked for a presentation on the work
  • There is a filmmaker who is currently working with the Arts coordinator to ‘research the particular characteristics of this effective and culture changing arts in health project…. Looking into the methodologies developed to encourage patients to speak about their experience of being cared for by the NHS.’
  • In conjunction with this work we have convened two International Storytelling for Health Conferences. See artsinhealth.wales/conference
  • There are talks, meetings, conference presentations and newspaper articles planned for the coming year.
  • To ensure the continued support for this growth we have appointed a digital story apprentice in the patient experience team. The Arts Coordinator is dropping some other projects to focus more on developing this work. We are talking to national bodies such as Public Health Wales who have offered support to establish an all Wales library. We are also continuing to train and develop the next generation of story facilitators.”

Impact

Digital patient storytelling is now our main-stream methodology for listening to patients. It is primarily for helping patients be heard, advocating for service improvements and creating action plans when patients describe poor quality care and following serious incidents. It is also used for helping patients process their experiences aa well as for sharing best practice and information with other staff and patients.

We are now in the position of being able to show how complaint stories have led to significant service improvement. Current patients are having a much better experience. For example a story of poor post-natal mental health support was part of the process of improving out perinatal mental health services and women are now telling stories which illustrate the benefit of the improved service. We can show the before and after stories.

We are also measuring our impact through collecting feedback from patients who have told stories.

Here is some typical feedback from a patient who wrote a long email to our CEO following her husband’s death and was then given the opportunity to make a digital patient story:

“The experience was respectful, caring, meaningful and helpful. It became therapeutic in effect. I felt heard. I am proud to say that others have benefited – and continue to benefit – from my stories and I believe some lessons have been learned. My patient stories enabled me to re-establish some control, some sense of empowerment – and crucially, to be able to stop ‘fighting’. It has been an important chapter in my grieving journey, and I am very grateful for the opportunity.”

We constantly monitor the effectiveness of the training and the transfer into practice through evaluation questionnaires as well as meeting regularly with the trainees and providing feedback on all stories. We are planning a more formal piece of evaluation in conjunction with Swansea University researchers.

We have termly digital story showcases where staff can meet the patients and listen to their stories. Each of the five delivery units across the Health Board are now developing their own showcases to ensure that the patient’s voices have a wide audience and that more staff are aware of the story facilitators and consequently more patients are offered the opportunity to be heard.

Stories are played at the Board of Directors meeting, the Quality & Safety Committee and Forum, the Nursing & Midwifery Board, the Medical Senate, audit meetings, training events and many ward level and patient facing meetings and conferences.

We also use the stories on the hospital intranet.

Relevance to Others

Digital patient storytelling is a simple but effective methodology. It champions the patient’s voice and leads to service improvements. It is relevant across all health sectors.

  • We have already trained staff from 3 other Welsh Health Boards. We are planning training for 2 further boards.
  • Public Health Wales are talking to us about creating an all Wales library of stories for listening and learning.
  • We have a waiting list of requests for training from England. We have presenting the work to Neil Churchill at the Department of Health, to the Patient Experience Network and at the 9th International Digital Storytelling Conference in Loughborough.
  • We are also starting to look at which stories can be shared more openly, and we will make more stories available on the internet.
  • The Times newspaper are writing an article about the work.

Standing Out

This patient story programme is led by a storyteller who understands story theory and how to shape a story that will communicate well. The training course covers many ways of facilitating patients to shape and tell their stories.

The process mirrors person centred counselling. It is important that the facilitators voice does not interrupt the recording – because of this they are listening without speaking. The patient’s recording is then edited, and their words are played back to them in their own voice. Patients often comment that the recording expresses exactly what they wanted to say and that they didn’t know that they spoke so well! There is a constant emphasis on the fact that the patient is the director of their story – it is not completed until they are entirely happy that their message has been captured accurately. No corporate criteria are allowed to influence the story.

There is a careful informed consent process that is started at the first meeting and signed once the story is finished.

The shortness of the completed videos (usually around 2 minutes) makes them easy to listen to without losing attention. The fact that they are recorded means that they cannot be easily interrupted.

Key Learning Points

Digital Storytelling mirrors person centred counselling and allows deep listening which brings resolution and healing to the teller.

  • If the story construction is informed by story theory then the stories will be memorable and they will build empathy in the listener and lead to real change in attitudes and practice.
  • People are busy – the 2-minute format of digital stories means they get played in many contexts and listened to by busy, senior leaders as well as frontline staff.
  • I have uploaded three example stories to https://www.artsinhealth.wales/storytelling.html
  • All other documentation can be shared in relevant contexts such as training courses.