The International Forum on Quality and Safety in Healthcare 2018 took place in Amsterdam, the Netherlands, on 2-4 May 2018. The International Forum is a biannual event organised by the BMJ and the Institute for Healthcare Improvement (IHI). It sets out to connect healthcare practitioners and leaders from across the globe, sharing improvement ideas and promoting research on quality and safety, with the aim to improve outcomes for patients. Dr Julie Reed, Rachel Matthews and Sophie Spitters attended representing the NIHR CLAHRC Northwest London (NIHR CLAHRC NWL) team. We attended the event with two main purposes; to share some of the NIHR CLAHRC NWL learning we had synthesized and to develop our thinking by learning from and with others. And developing our thinking we did! The International Forum, with over 3000 attendees, provided a fruitful environment: to get feedback on our work; to listen to experts; and to have friendly yet critical discussions with peers. Based on our experience at the International Forum 2018, we wanted to share our top 3 lessons learnt.

Lesson 1: It’s worthwhile helping patients achieve what matters to them.

Healthcare professionals aim to improve the health of patients. At this International Forum we were shown repeatedly that healthcare professionals and patients collaboratively can and do achieve so much more. Maureen Bisognano, President Emerita of the IHI, highlighted that to create such meaningful experiences, we should not only ask ‘what’s the matter?’, but also start asking ‘what matters to you?’. Sara Riggare from the Karolinska Institute and Dr Chris Subbe from Bangor University emphasise that we have to be sensitive to the context in which this question is asked. It’s not comparable asking ‘what matters for my positive health service experience?’, ‘what matters to save my life during a medical emergency?’ or ‘what matters to me living with a chronic disease?’. We will highlight a few diverse pieces of work presented at this years’ International Forum that demonstrate how it can truly be worthwhile helping patients achieve what matters to them.

Writer Dan Heath and Maureen Bisognano talk about ‘what matters to you’ in direct clinical care, where being compassionate and creating positive moments can be just as important as delivering evidence-based care. They explain that asking patients what matters to them helps us understand who they are as persons, what their assets and dreams are. This understanding can support building a real connection between staff and patients, a connection between people. And by understanding what matters to someone, we can work together to achieve some of these things. These things don’t have to be big, they can be small. In Belgium, the story of Viviane demonstrates this. Viviane had been in the intensive care unit for 2 months after waking up from a coma. She was looking forward to eating solid foods again, and she mentioned that she would love to taste a mango. When this was provided, Viviane teared up and said she would never forget this moment. Dan Heath explains it’s peak moments like these, that will stay with us in our memory and that we should try to create such moments whenever we can. June 6th will be international what matters to you day. Share your story and follow those of others via #WMTYD18 and #MangoMoment.

Sara Riggare says that what matters to her is to self-manage her Parkinson’s disease as well as she can for which she actively uses self-tracking. She sees her medical doctor about twice a year for a 30 minute consultation and the rest of her time she spends on self-care. Sara takes many medications and she does different types of exercises to manage her condition. In order to see if she’s improving, Sara self-tracks via electronic tracking devices but also via just noting down observations. She specifically uses self-tracking information when there is a change, for examples when she experiences a new symptom or when she is starting a new medication. It also helps herself and her doctor to make more informed treatment decisions. In this way, self-tracking empowers Sara to look after herself well. Thomas Blomseth has also taken a self-tracking approach to help him manage his allergies. Both works shows how longitudinal individual data can optimise care. As such, self-tracking data provides an alternative to randomised trials for progressing individualised care. You can watch Sara’s story here.

Rachel Matthews described the value and impact of the Exchange Network to delegates using the successful poster created with graphic artist Sandra Howgate. The Exchange Network is where patients, carers, clinicians, researchers and managers can learn together about collaboration and improvement. The network was co-designed with patients and carers and is hosted by NIHR CLAHRC NWL. It enables members to share ideas, build relationships and attend to what matters to them.

Rachel Matthews next to her poster on the NIHR CLAHRC NWL Exchange Network.

Lesson 2: To look after patients well, we need to look after our staff.

Besides compassion and positive moments for our patients, Maureen Bisognano also highlighted the importance of creating positive moments and being compassionate for our colleagues and ourselves. From a patient safety perspective, Göran Henriks from Jönköping county council, highlighted that people in Sweden are shifting the emphasis from human error to engineering resilience. It seems strange that we define safety in absences; absences of errors, incidents or violations. This has the underlying assumption that people are the risk factor in safe systems. Instead we know from experience it is often the other way around. It is people who adapt to unexpected situations, and who continue safe practice even under difficult circumstances. It is therefore important to support teams strengthening their adaptive capacity and to avoid shaming and blaming individuals when errors do occur.

Anne de Pagter and Prof Wim Helbing from Erasmus MC shared their inspirational story on how they identified unsafe practice and how they subsequently increased their resilience. One night, Anne was working as a junior doctor looking after a child who had his treatment plan developed earlier that day. During the night, his vital signs changed and Anne needed input from the consultant on call. So, she phoned Prof Helbing, who responded with anger. He had just gone off to sleep after a long, difficult day and was woken up to discuss a patient he thought was well managed. They were able to sort the issue out, but Anne worried she would be reluctant to call Prof Helbing again, which could put lives in danger. So, the next day Anne sat down with Prof Helbing to discuss what happened. She expressed her concerns respectfully, which made Prof Helbing realise something had to change. The early recognition of this safety risk and the constructive and supportive communication that followed, led to practice developments. A new protocol was implemented where junior doctors always had a second consultant they could call, and the whole team undertook training in giving and receiving feedback. This is a great example of how to manage safety risks in healthcare.

During the International Forum night programme, we saw the other side of the story; the damage it can do if we don’t support each other and manage the situation appropriately when things do go wrong. True Cut was a fantastic performance about serious medical errors. It made visible the systemic and personal issues leading up to medical errors as well as the tumultuous emotions. The play and the audience discussion afterwards highlighted how difficult and painful such an experience can be, not only for the patient and his/her family, but also for the healthcare professionals involved. And in too many places there are no supportive structures in place that help patients and staff process what happened and make constructive changes like we have seen in the previous example. Margaret Murphy, WHO patient safety advocate, thoughtfully speaks of the feeling of shared abandonment, experienced by a patient and doctor. As a healthcare system we need to provide better support. During the audience discussion some positive experiences with innovative support systems in Australia were shared. Increasing our understanding of the issues and learning from others are the first steps to make things better. You can find more information on True Cut, written by David Alderson, here.

Actors performing True Cut at the International Forum’s night program. Image by Anna Lawrence-Jones

Lesson 3: Good evidence is not only high-quality, but also useful.

The research community also emphasised their own responsibility delivering clear contributions to healthcare and healthcare improvement, through their search for the meaning of ‘good’ evidence at the day 1 International Improvement Science and Research Symposium. In the morning, Prof Ulrica Schwarz from the Karolinska Institute, Dr Gareth Parry from the IHI and our own Dr Julie Reed presented their personal viewpoints on the issue, which were surprisingly well aligned. They emphasised the notion of useful evidence, which was echoed throughout the day and exemplified by several researchers.

The discussion around good evidence was thoughtfully framed by Dr Reed taking one step back and firstly asking ‘what is evidence good for?’. She explained that in randomised controlled trials the focus is primarily on interventions and describing what outcomes are causally linked to their implementation. In quality improvement the focus is more pragmatic. Quality improvement is primarily concerned with achieving positive outcomes in practice. Prof Schwarz builds on this thought and notes that we don’t only need trustworthy evidence, but also useful evidence. She defines trustworthy evidence as the causal relationships between intervention and outcome when implementation and context are held constant. However, in real-life settings this type of evidence is insufficient to be useful. Instead, she proposes the following equation for useful evidence: (traditional) evidence x implementation activity x context = improvement that matters. So, ‘good’ evidence is useful evidence that provides us with insights as to how intervention, implementation and context interact to help us maximise improvement outcomes.

The development of useful evidence is also pursued in my own work presented on day 1, titled ‘How do quality improvement methods support improvement initiatives?’. I found that quality improvement methods are used differently across healthcare improvement teams. Strategic goals for using improvement methods were implicitly developed by the teams to navigate their own context-specific challenges and opportunities. These unique strategic goals were subsequently linked to diverse ways of using of quality improvement methods on a tactical and operational level. As such, my work demonstrates how quality improvement methods, their application and the context in which they are used interact to achieve their outcomes. Finally, I would like to thank Dr Liane Ginsburg from York University and Dr Yogini Jani from University College London for a brilliantly facilitated discussion and for inspiring me via your work and your insights.

Sophie Spitters presenting her work on the use of quality improvement methods.

It was a great experience attending the International Forum 2018 in Amsterdam. We learnt so much from patients, healthcare professionals and researchers all working together to improve health and care for patients. Thank you to all speakers and attendees, we take this learning back home to NIHR CLAHRC NWL.