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  • Digital storytelling: Learning opportunity or reputational risk?



    In this anonymous blog, a member of NHS staff talks about their experience promoting digital storytelling to help staff members and the wider trust learn from patients’ perspectives on incidents of harm. They describe the conflicting pressures of leaders’ concerns about how these stories might affect the Trust's reputation and the need to be transparent with patients and staff.


    Patient and family stories about experiences of healthcare are a vital resource for healthcare organisations, especially when they relate to avoidable harm or a patient death. I work in the patient safety team at an NHS acute hospital trust and decided to take on a digital storytelling project—I wanted to test whether it could be used as a tool to help share learning within our organisation.

    The idea behind digital storytelling is to promote active listening. You don’t use a visual of the person talking, but instead use illustrations and photographs in the video to add context to the story as the person speaks. I believed that hearing patients and families share their perspective in their own voices could prompt a debate around how we can do things better, both individually and as an organisation. 

    After seeing one of the stories I had made, a department in the Trust asked me if I would speak to the parents of a child who had died due to avoidable harm while in their care. I went to the family home to interview them and created a video story of their experience of the events surrounding their child’s death. It was a difficult story, but it was powerful and moving and I managed to make it a good size and format to share.

    I started to show it to a few people for some feedback. Most people were really positive, but when I showed it to some senior leaders at the Trust, they were absolutely horrified. They asked me what I intended to do with it and where it was going to go. I explained it was to help raise awareness of the warning signs that had been missed that had led to the child’s avoidable death. We had worked with a national charity to get this messaging throughout the video and the charity was keen to share it on their website. This idea received a negative response from the trust leader as they felt that sharing the video would not be good PR for the organisation. 

    It floored me as I hadn’t imagined the story would be seen in a negative way, and I never anticipated that reputation would get in the way of patient safety learning. The Trust’s image seemed to be the top priority. This defensive response wasn’t helped by the fact that earlier that week, a major report had come out that put the specialty where the incident had occurred in the spotlight, so everyone was quite sensitive about public scrutiny in this area.

    The emphasis of Trust leaders seemed to be on controlling the message by making it clear that changes have happened since the incident. While I can see the need to share how we are doing things differently, my view is that other organisations who watch it won’t really be interested in the actions we took, as they need to make their own response. Being too prescriptive about how to solve the issue doesn’t allow for contextual self-reflection. Another concern raised was that patients and families would lose faith in our service if they saw my video. It’s certainly a consideration, but I think if people see that the organisation is willing to share even negative patient experiences, it builds trust.

    I walked away from that meeting without permission to share the video story, which was devastating for me given the conversation I had had with the family. I couldn’t quite understand how we were going to learn as an organisation, if we weren’t going to acknowledge the mistakes we had made in the past. I felt that the fact the family was working with us to make things safer was evidence in itself of the progress we were making.

    I went back to the same senior leaders a couple of weeks later with a member of the comms team and someone from the department that had asked me to record the parent’s story, both of whom were very supportive. At the end of the discussion, I was told by one of the senior leaders, “You know my opinion, you do what you think is right.”

    Shortly after this, a patient experience expert working nationally in the NHS asked me whether they could use the video I had made at the NHS Quality Committee. I had to decide whether I was going to allow it to be used, knowing that there were potential risks to my career. I spoke to my partner about it, and realised how fearful I was about the consequences of being transparent. It was a bit of a wake up call to the realities of NHS culture.

    In the end, I decided it was important that it was shared, so I took off all references to our Trust and gave permission for it to be shown. I wasn’t there, but apparently they discussed the story for much longer than they expected to and several members of the committee asked for permission to use the video in their own work.

    Interestingly, one of the main things they talked about was why the Trust had anonymised itself. It’s a really important question about oversight and the fear that hospitals have of admitting an incident of harm took place in their services—there’s a concern it might result in an impromptu inspection from the CQC.

    I let the Trust leaders know that it had been to the NHS Quality Committee, and as a result they asked that it be shared at the Trust board meeting. That was a really good thing, as when they saw the impact the story had on the board, they realised that allowing patients to tell their stories isn’t something to be frightened of. It provoked a conversation amongst the board that was useful, structured and reassuring in terms of the actions that have been taken.

    I have seen with other digital stories that what people take from them depends on many factors including their professional group and their life stage. For me, that’s part of the value—stories impact people in different ways and this all adds into the conversation and ensures we don’t miss less the obvious perspectives. When people internalise the impact of each story, they can apply it to their own practice.

    How do we tread that line between being open, honest and transparent and the pressure that’s put on hospitals to be perfect? It’s so important to show that we can take a situation and learn from it, but we have to do this against a backdrop of intense scrutiny and fear of consequences, both for trusts and individuals.

    One thing I’ve learned is that you must get executive leadership buy-in if you’re going to do digital stories relating to patient safety. As I discovered, they can land in different ways, but I stand by the idea that we should help and support people to tell their stories. The senior leader who had initially been so horrified by my video eventually congratulated me for my tenacity in sticking to sharing the story, but it was a difficult road to get there. It was tempting to just give up, but I owed it to the parents to stick with it and make sure their story was heard.

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    Thank you very much for writing this account. I too admire your tenacity and courage in doing what is right. Being so transparent and open is new and scary for some organisations and people still so we need pioneers like yourself. The reactions I get around the country in response to using After Action Review with patients and families participating illustrates the same concerns. Some trusts are all for it, others, are very hesitant. 

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    Thank you for sharing & for your commitment many would be too tired/scared to continue. I am sure you will not be alone in your personal experience and the response that you got. It is a sad situation to find ourselves in & one could argue with the lack of transparency we have learnt nothing from Francis, Morecombe Bay & many more public/large enquiries. 

    PSIRF has encouraged learning through different routes/methodologies and that includes through, and with our patients/families & staff. However, like your experience, it has not equipped those wanting to listen, learn & share with the 'negative' fall out of those more worried by their 'reputation.' 

    My view is that  'reputations' will be very short-lived compared to the long term impact on patients, families & staff when they are harmed in NHS care. I just hope that the future leaders of the NHS can see the value of inclusion and learning rather than 'judging' and 'numbers'; sometimes you have to be brave & 'air your dirty laundry' in order to learn and move forward; that is how reputations will be remembered, not by what you choose to 'hide' or 'manipulate' for a good look. 

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