What is Public Trust in the Health System? - Insights into Health Data Use

The book provides an in-depth and evidence-based explanation of what public trust in the health system is. To do so, the book focuses on the case study of health data use. The content of the book summarizes 10 years of my work and is relevant for students, government officials and health policy makers. 1.Introduction The introduction chapter will provide a first glimpse at the importance of the topic to catch the reader's interest. Further, the chapter provides a short history about my previous work that led to the book. This will help the reader to locate the book in the present field of research and to relate to the book's angle (health policy, governance, and social science) on public trust. By knowing the background to the book, the reader will be able to better follow the arguments made and to use the information provided for his/her own work. Last, the introduction will provide an overview of the following chapters. Part 1: Why do we care about public trust in the health system? The first part has two main purposes:a)to introduce the reader to some basic concepts of trust to prepare his/her mindset for the following chapters, andb)to make the case for the importance of public trust.The second chapter provides an overview of the basic principles of trust which are for example, trust is a relational construct, trust is future oriented, the trusting party chooses freely to trust the trusted party, the trustworthiness of the to be trusted party is always assessed by the party placing trust. The chapter will further engage with health policy that aims to increase public trust such as policy fostering for example transparency and accountability, regulation, or ethical cultures. Building on previous theoretical work by Niklas Luhmann, Anthony Giddens, and Piotr Sztompka, this chapter will help the reader to develop a deeper understanding of what trust itself is and how public trust is different from individual and interpersonal trust. The third chapter will introduce the reader to three examples where public trust is important for the success of these health system activities. Adherence to COVID-19 measures, vaccination hesitancy and public support of health data use within the health system are the main examples to introduce the reader to public trust. All three examples are at present in the media and are therefore easily accessible to the reader if not personally relatable. Moreover, a large body of literature exists about the case studies, so that readers can dive deeper into the issues presented in the third chapter. Part 2: What is public trust in the health system? The second part has two main purposes: a)to explain how and where public trust develops, and b)to explain what public trust in the health system is. Chapter four will explain how public trust develops in the public sphere by public discourses between health system actors and citizens. Within the public sphere, private individuals and different actors from within and outside the healthcare system come together to discuss issues of trust based on their own experience or experiences of others. Examples of modern public spheres are, next to sports clubs and other social gatherings, online public spheres such as Twitter, Facebook, blog web-pages or even to some extend communities facilitated by different Mobile Apps such as Clubhouse, Instagram, TikTok and others. Despite the permanent communication noise on these platforms, discussions of public trust seem to develop around topical issues, e.g. vaccination or tracing apps. Discussion spheres calm down after the issue is resolved or morph into a new discussion sphere. Following an introduction on how and where public trust develops, chapter five, six and seven will guide the reader to the core of the book, the conceptual framework of public trust in the health system. I developed the framework during my PhD with empirical work in England using the three case studies: care.data, biobank research, and the 100.000 Genomes Project . Since then, I refined it and currently use it in my research project on public trust in electronic health records. Chapter five will describe the themes that cause public trust (e.g. Anonymity, Privacy, Transparency or Time). Chapter six will describe what the effects (Legitimisation and Participation) of public trust are, and chapter seven will explain how public trust is framed by issues (e.g. Zeitgeist, Religion, Fear, or Risk) that influence public trust but do not directly cause public trust. This comprehensive view on public trust will help the reader to not only precisely understand what makes public trust and what the effects are, but also to understand what issues frame public trust and therefore can have an impact on public trust. Chapter seven is particularly interesting for policy makers as it will focus on issues that are at times neglected in trust in health systems literature, such as human error, public mood, people's worldview. Part 3: How can we foster public trust in the health system? The final part of the book has three main purposes:a)to explain what governance and policy action can foster public trust, b)to emphasise the importance of communication and information for public trust building, and c)to explain what ways are suitable to quantify public trust. Within this forward-looking part three, chapter eight will introduce the reader to eight policy recommendations that can increase public trust. The recommendations are: Do not rush trust building; Engage with the public; Keep the public safe; Offer autonomy to the public; Plan for diverse trust relationships; Recognise that emotions and calculated decisions influence trust; Represent the public interest; and, Work towards a net-benefit for the health system and the public. The recommendations directly link to the conceptual framework presented in part two and are therefore relatable at this stage in the book. By using first results of my current work on the implementation of the conceptual framework of public trust into practice, I intend to provide additional real-world examples on how these recommendations can be applied into practice. As information exchange is critical for public trust establishment chapter nine explains the importance of communication, signs and signals. Without exchange of information in one form or the other, it is not possible to build public trust. Therefore, communication is central to the public trust building process. Next to conversation or one-way media communication, a particularly interesting, but at times forgotten form of communication are signs and signals. Might it be a reputable label, such as the blue NHS England label or the body language of a spokesperson, very recognizable and visible but also subtle cues and hints can contribute to the build-up of public trust. Chapter ten will introduce the reader to quantification of public trust. Quantification in terms of measurement or polling is common practice in public trust research and politics. Eventually, public trust can serve as a performance indicator or outcome measure. Yet, the concept of public trust introduces challenges to these methods and therefore they need to be conducted with care to deliver a meaningful result to health system actors and the public. Alternatives to measurement will be discussed as for example counting effects that are seemingly related to trust such as vaccination uptake or observation of public discourse with digital methods as an alternative altogether. 11.Conclusion The last chapter will highlight the main points made in the book.