Realising Realistic Medicine: Chief Medical Officer for Scotland annual report 2015-2016

Chapter 2: Realistic Medicine: Engagement with People we care for and support and the Wider Public

Clinicians can only practice 'realistically' with the full understanding and support of the people we care for and support, those who care for them and the wider public. Gaining a broader understanding of what Realistic Medicine means beyond the medical profession and beyond Scotland has been a good starting point; however the most important group to foster shared goals with is the public for whom Realistic Medicine will be a reality.

The Scottish Health Council and the ALLIANCE will be key in achieving these aims. The Scottish Health Council will be taking part in connecting with the public on Realistic Medicine.

Realistic medicine identified key themes going forward - shared decision-making and reducing harmful and wasteful care. It is essential we have a broad-ranging discussion with the public about these issues.

While there is currently no agreed definition of shared decision-making in healthcare, the common variants used are all broadly similar in stressing the importance of people we care for and support and professionals working in partnership, making decisions based on the best clinical evidence, making sure that people are fully informed about risks and benefits, and combining this information with the person's values and preferences.

Research from the UK and other countries suggests that strategies to enhance shared decision-making can improve:

• People's knowledge about their condition and treatment options
• People's involvement in their care
• People's satisfaction with care
• People's self confidence in their own knowledge and self care skills
• Professionals' communication with people we care for and support.

It is clearly important to understand what people understand by the terms 'Realistic Medicine' and 'shared decision-making' and what they want to see happen as a result. Not all people will want the same thing, nor should they. There will be a wide range of views. However an important context for this work is that in surveys of NHS patients over a number of years over one-third of people we care for and support have consistently told us they would like more involvement in decisions about their care. So there is a clear issue we need to address.

"We must find a way to describe that providing treatment is not always the way to go and that people's dignity must be foremost. We must have the courage to be honest, open and balanced. Accept that we all have the right to make the decisions that are right for us. Have the courage to involve the community in difficult decisions and explain these in a manner which is open and honest."

We also know that people we care for and support, carers and the public need to be involved and to give their views on reducing harm and waste. We know from a number of studies that better patient and carer participation in itself can lead to safer care, so these two key themes support each other. We know that harm and waste are also subjects on which people we care for and support, carers and the public will have valuable insights and input. We need to have a shared understanding of how we do this, and even what we mean by 'harm' and 'waste'. Do we all hear the same thing when we hear these words?

The Scottish Health Council is very happy to be involved in this work. They want to build on work that has already been done so we are not starting from scratch. For example in Healthcare Improvement Scotland, the DECIDE project worked with people to develop communication strategies to support informed decisions and practice based on evidence, and used the learning from this to support patient-friendly guidelines. This in turn helps support shared decision-making in practice.

The Scottish Health Council will also be working through the Our Voice framework. Our Voice is an initiative involving the Scottish Health Council, the ALLIANCE, Scottish Government, Healthcare Improvement Scotland and CoSLA, and is about developing approaches at individual, local and national levels to support improvement and to empower people to be equal partners in their care.

This initiative will be key to taking forward the discussion around Realistic Medicine and involving people we care for and support and the public in this discussion.

As part of this work the Scottish Health Council will be surveying members of the Scotland-wide Our Voice Citizen's Panel in early 2017. This is a panel of volunteers that have been recruited directly to be broadly representative of the Scottish population. This survey will help us identify key issues, concerns, and what support people feel they need to engage in shared decision-making and will also support the aim of reducing harm and waste. More in-depth discussions will be taking place in public discussion groups around Scotland in the spring. We also have plans to commission a Citizen's Jury - which gives a chance for a small number of the public to spend a length of time learning about, hearing evidence, and discussing this issue - later on in the year.

Case Study

The Citizen's Jury

A Citizen's Jury is an innovative way of involving people in more complex decision-making processes related to the functions of government and other public bodies. Citizens' Juries are the opposite of a survey or poll. They involve lengthy deliberative processes where a group of community members gather to provide an overall response or recommendation about a particular issue or topic.

The Jury studies detailed evidence and can hear from experts in relevant subjects in a similar manner to a trial. Like in a trial, where public trust is put in the verdict reached by a jury because the public is assured that the evidence has been scrutinised by their peers, Citizens' Juries can be effective because they show the community that citizens like them are being given detailed information and coming to carefully considered conclusions, as well as providing rich information for public bodies to base decisions upon.

It is really important that we make sure this works for everyone. The Scottish Health Council are currently at the early stage of a project working alongside community members in an area of multiple deprivation, to develop practical ways to support local people in shared decision-making with clinicians and professionals. We hope that this will provide ideas and tools that can be shared more widely and help reduce health inequalities.

We see engagement on Realistic Medicine as the beginning of a longer-term dialogue, building on the 'Healthier Scotland' public engagement carried out last year, and exploring what we as a society expect from medicine and healthcare and clinicians, and how we can work together to support informed evidence based decisions with people and carers involved to the extent that they wish in these decisions. This will lead to better outcomes for everyone, people, carers, professionals and the people of Scotland.

Case Study

Communicating with People we care for and support

In NHS Borders an 'empowering poster' has been developed and will be displayed. It includes questions for people to be encouraged to ask their doctor. It will be displayed in waiting areas and used to encourage dialogue from the person's perspective. This will be aligned with themes from both 'Realistic Medicine' and 'Choosing Wisely' and further literature will also be aimed at junior doctors and students - empowering them to approach seniors and ask about tests, management, etc.

Poster being used in NHS Borders

A further piece of work that has already been started is the linking of Realistic Medicine and House of Care. A 'Realistic Medicine Meets House of Care' summit was held in August 2016 and there was broad support at this summit for linking the two concepts. The aim of the summit was to bring a wide range of stakeholders from policy, research, practice and teaching to share with them the learning and experience of Year of Care and how the underlying principles of their approach can be applied to wider contexts.

There was a broad enthusiastic response to the concepts that were presented and many agreed it was a tangible method and framework to help implement many aspects of Realistic Medicine. Many agreed that the starting point needed to be in helping to shape and develop cohesion in the values of professionals but also the culture of the general public. In many respects there was perhaps no need for any policy development as the policy landscape in Scotland is fertile for this type of approach. Indeed there was a strong voice that the time was 'now'.

"Loneliness and social isolation are public health and health inequalities issues. Realistic medicine can help address this challenge, with its emphasis on improvement and innovation, shared decision-making, and a personalised approach to care. Our vision should be for kinder, more inclusive and enabled communities. To get there we need joined up, strategic action across all the social determinants of health and strong partnership working between our public, third and community sectors."
Voluntary Health Scotland

Case Study

The Potential of Realistic Medicine to Transform Mental Healthcare and Services

The next Scottish Government Mental Health strategy will be published in 2017. This will reflect the philosophy of Realistic Medicine, embracing the best international evidence, supporting empowerment and recovery oriented approaches to care and intervention, more effective use of knowledge and skill across the multi-professional knowledge base, and the conditions to support innovation in care delivery models and approaches.

New models of mental health provision in primary care that involve better access to a wider range of interventions delivered by a more diverse range of clinical and care professionals. With new primary care transformation funds we are testing out over 30 different models of mental health provision in primary care across Scotland and these will report findings in two years.

Empowering people with information to manage their own conditions is essential. NHS 24 is working on this in relation to mental health. The Distress Brief Intervention Programme seeks to offer people who have presented in distress with a two week intervention involving supportive listening and problem solving. This is done collaboratively with them, not to them, and is fundamentally about people participating actively in their own care and treatment. Mental health is an area where rights are carefully considered especially in those who lack capacity. The role of advanced statements with the new legislative requirement for registration by the Mental Welfare Commission for Scotland provides an important way for people to consider and record their wishes and opinions about any future necessary mental healthcare and treatment should they become subject to compulsion.