Understanding the Value of Patient Stories

One of the main motivations for patients to tell their story is to help others in the same situation. Patients consider this a good way to share their experience, raise awareness and give back to the community. 

Patients felt proud knowing that others would see the video and benefit from hearing about someone else’s experience. The videos help people see that illness can affect anybody, however there are positive outcomes.

For those who had had a less positive experience with their care, their main motivation was to provide feedback to promote change and help improve our health system. 

Some also described it as speaking up for people who can’t speak for themselves.

Face to face meetings prior to filming helped participants feel informed about the process, as did seeing videos that have already been made.

Participants who have previously had media training felt comfortable with the process, however for those new to it, they were nervous and a bit apprehensive. All participants said that the nerves went away very quickly on the day of filming due to the professionalism of the team. Participants were made to feel comfortable, relaxed and reassured. They felt safe in their home environment and found the process easier as a result.

Filming helped some participants to come to terms with their illness and/or experience, and they were pleased they took part as they felt like a weight had been lifted. For some it was a highly emotional experience, however the compassion and empathy from the team meant that patients were made to feel relaxed and comfortable.

Most participants who have seen their video were very happy with the messages that the video portrayed. Unfortunately, a small number of participants were disappointed that what they believed were important messages had been excluded. On one occasion, a participant provided feedback and the video was re-edited to include a message that was important to them.  

There is overwhelming support to keep making the stories as participants believe the story is powerful when it comes "straight from the horse's mouth", which makes it balanced and more believable.

Participants hope that the videos are viewed by doctors, nurses and specialists to help them to relate to their patients, whilst also being used in training programmes. Some participants have noticed a positive difference in staff attitudes. 

When patients have returned to the hospital, they talk about staff acknowledging them and making comments about the video. This is a strong indication that the videos are being used. One patient saw her video on display at a conference and noticed that it generated conversation with doctors and physiotherapists.

The canvas prints displayed on the hospital walls are frequently noticed by family or friends, and staff will initiate conversations with patients to talk about their experience.

There were also comments about not knowing what the individual videos are about.  A short description such as 'end of life care', is recommended so that patients can select stories that are of interest and relevant to them.

There were some additional suggestions such as producing videos with people from all walks of life, keeping the content fresh, varied and current.

• Participants would like to see a draft version of the video prior to it being finalised, with the opportunity to suggest changes or add content so that important messages are not missed

• Provide participants an update on what has changed as a result of making the videos:

• Add a short caption to describe what the video is about on the website

• Keep the content current and varied

• Provide a variety of videos and ensure they are representative by using a mix of cultures, ethnicities, ages and illnesses

• The videos are mostly used at internal staff training sessions:
• New graduate nurses induction
• Welcome to Waitemata
• Junior Doctor orientation
• Management Foundations course

• More frequently, trainers will direct staff to the website and encourage staff to watch the videos in their own time.

• The Patient Experience team share the videos regularly to remind staff about the impact that their actions have on overall patient experience when undertaking everyday tasks

• The videos are also shared with the Waitemata DHB community to demonstrate the value the organisation places on ensuring patients have a positive experience

• Staff consulted as part of this review recognise the importance of these videos and noted that the videos could be used more in their roles

There is overwhelming support to continue making patient videos. 

The videos remind staff that their daily actions impact our patients, their family and friends in different ways. For some, they didn’t realise that patients felt this way and the use of real life situations increases the credibility and value of the videos.   

The current portfolio of patient stories is satisfactory and staff can usually find stories that support the points they are trying to get across in a training session. There is agreement that these videos are important and we should continue to make patient stories in the current format as and when the need arises.

There is also support to take the stories to the next level and provide education tools for staff and patients.  Examples include:

• Diabetes is on the rise and a video that takes a patient through a journey of what it’s like to be a diabetic person coming into hospital, what happens with their medications and what they can expect during their stay would be extremely valuable.

• Heart failure – how are patients feeling about the information they are provided on discharge, what happens when they get home, the difficulties they experience i.e. patients don’t always realise that foods make up part of their daily fluid allowance, how does this affect them?

• The impact of staff actions on our patients.  For example, staff talking in an inappropriate way and being overheard by a patient, patients feeling conscious about their injury/wound  and hearing staff laughing about something unrelated but  thinking it’s about them, staff not taking the time to communicate with someone who doesn’t speak English. How does the patient feel? A video about experiences that happen every day and reinforcing our duty to provide positive patient experiences.

• A virtual tour of the maternity ward and what to expect during labour.  A video following a pregnant mum through her journey and answering important questions such as who is a lead maternity carer, what is the difference between midwife led care and obstetric care, what to do when you arrive at hospital, where to go, what’s available, how long can I stay, how long can my partner stay, what happens if I need to have an elective or emergency caesarean section, what is birth care and how does it work.

• Patient journey when arriving at the hospital in an emergency situation.  What is the experience like for an emergency patient, what concerns do they have, what information do they need, what do patients understand the different departments to mean, ie Emergency Department, Triage, Assessment Diagnostic Unit, Short Stay Unit.  What are their expectations?