Public Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research Purposes

4 LITERATURE REVIEW: EMPOWERING CITIZENS IN DECISION MAKING

Introduction

4.1 This chapter presents the findings of the desk-based literature review of methods of empowering citizens in decision-making processes, particularly relating to uses of data for research purposes. This informed the design and development of the deliberative public workshops.

4.2 The chapter is structured around three main sections: Firstly, it begins by presenting a literature review on public engagement and empowerment. This provides some background about the ways in which public engagement emerged as a central theme within policy-making in the UK (particularly relating to science and technology). This section will then go on to discuss key motivations for undertaking public engagement, the benefits that can arise from public engagement and some of the various ways in which public engagement can be undertaken. It will present a tripartite typology of public engagement approaches (awareness raising, consultation and empowerment) and discuss some of the ways that citizens can be empowered through public engagement processes.

4.3 The subsequent section of this chapter will then present the findings of a literature review relating to the different methods that have been used to empower citizens in decision-making about how their data are used in research. This review classifies the various approaches to public involvement according to our typology of public engagement. It outlines how the various studies have undertaken awareness raising, consultation and empowerment activities, paying particular attention to the ways in which empowerment has been pursued and achieved.

4.4 Finally, the chapter will identify key messages from this review relating to the ways in which members of the public might be empowered in decision-making relating to the sharing of data between the public and private sector.

Public engagement and empowerment

Background

4.5 In 2000, the UK House of Lords Science and Technology Committee (2000) stated that there was a 'crisis of trust' in science. This landmark statement coincided with a widespread change of thinking regarding the relationships between science, technology and the public (Pieczka & Escobar 2013). Whereas previously there had been an emphasis on improving public understanding of science through awareness raising in order to increase public confidence and acceptance of science (e.g. Gregory & Miller 1998, Jasanoff 2005, Wakeford 2010), this gave way to an emphasis on two-way, dialogical forms of public engagement.

4.6 In the wake of high profile scientific controversies (such as BSE) there were calls for 'greater acknowledgement of doubt and uncertainty in scientific research and for a change in the culture of science communication and decision-making […] A new consensus emerged in the early 2000s which suggested that science would gain legitimate authority only if citizens were given a voice' (Wakeford 2010: 88). This also reflects a wider belief that 'new relationships between citizens and institutions of governance must emerge if a crisis of democratic legitimacy and accountability is to be averted' (Coleman & Gotze 2010: 4). Pieczka and Escobar (2013: 113) observed that: 'The demand for direct citizen participation in policy-making has grown steadily, underpinned by the idea that a more participatory democracy can complement and strengthen representative institutions, as well as reduce the democratic deficits caused by technocratic governance'.

4.7 Rowe et al (2005: 331) have observed that within 'contemporary democratic societies [there is a] growth in enthusiasm within policy circles for public "engagement" or "participation" as a means of approaching certain difficult issues like the management of risks'. Wilsdon and Willis (2004: 18) note that the 'science community has embraced dialogue and engagement, if not always with enthusiasm, then at least out of a recognition that BSE, GM and other controversies have made it a non-negotiable clause of their "license to operate"'.

Criticisms of Commitments to Public Engagement

4.8 Nevertheless, despite widespread and increasingly routine commitments to public engagement, recent critical work has argued that this has not gone far enough (e.g. Irwin 2006, Wakeford 2010, Wilsdon & Willis 2004, Wynne 2006). For example, Wynne has raised concerns that public engagement and dialogue are employed instrumentally in order to secure public trust. He contends that: 'it is a contradiction in terms to instrumentalize a relationship which is supposed to be based on trust' (Wynne 2006: 219). Trust may be earned through openness and transparency and through the creation of meaningful opportunities for participation. However, sponsors of public engagement exercises should not expect participants 'to trust oneself, if one's assumed objective is to manage and control [their] response' (ibid.: 219-220).

4.9 For Wilsdon and Willis (2004: 16) the emphasis on public engagement with science represents a wider pattern whereby the 'standard response' of government to public ambivalence or hostility towards technological, social or political innovation is 'a promise to listen harder'. However, such promises do not lead inevitably to meaningful forms of public engagement. Previous public engagement initiatives have limited the opportunities for, or scope of engagement. For example, they have tended 'to be restricted to particular questions, posed at particular stages in the cycle of research, development and exploitation. Possible risks are endlessly debated, while deeper questions about the values, visions and vested interests that motivate scientific endeavour often remain unasked or unanswered […] when these larger issues force themselves on to the table, the public may discover that it is too late to alter the developmental trajectories of a technology' (ibid.: 18).

4.10 Similarly, Irwin (2006: 309) has observed that recent policy announcements have included both commitments to public engagement and openness as well as to 'longer-established notions of sound science […] typically, one part of a document adopts the language of re-building trust while another is committed to an established economic and technical agenda'. While it is clear that there is a growing policy emphasis on public engagement relating to science issues Irwin questions the meaning and implication of this commitment. In his examination of the UK Government's public dialogue relating to genetically modified (GM) agriculture, he noted that 'the UK Government offered no guarantee during the exercise that it would act upon the report' (Irwin 2006: 313). Furthermore, it was noted that this public dialogue was part of a broader debate about GM which also involved (though not exactly simultaneously) economic and scientific strands of debate. 'It would appear that the construction of public debate, economic and scientific reviews as three separate strands inhibited the possibility of transparent public engagement in 'technical' analysis or of public discussion openly reflecting upon technical issues raised by the other streams' (ibid: 313).

'Lay Expertise'

4.11 Yet, much persuasive literature exists to argue that members of the public very often have their own expertise which can be of great value and relevance in decision-making regarding science and technology. For example, in a study of the public's understanding of new genetics, Kerr et al (1998) concluded that due to their various forms of 'lay expertise' it is more useful to think of lay people as being expert in, as opposed to ignorant of, the potential impacts of genetics on their lives. Similarly, Rowe and Wright (2001), in an evaluation of empirical studies into expert and lay judgements of risk, concluded that there was no proof to suggest that experts' judgements were more accurate or significantly different from those of the public. As Wakeford (1998: 12) notes; 'citizens have shown themselves to be highly capable of understanding complex scientific and technical information'.

4.12 Acknowledging the value of public (lay) knowledge highlights the important and varied roles which public engagement might play. However, in order for this engagement to be meaningful a number of considerations have to be addressed. For example: who is in control of the issues that are discussed? Who decides what constitutes a valid - and relevant - fact? And if dialogue is a two-way process, what assurance do participants have that decision-makers take on board their insights and priorities? (Wakeford 2010).

Benefits of Public Engagement

4.13 Public engagement has an important role to play in democratic societies, as the Wellcome Trust (2005: 2) observe: 'Most agree that decision-making in a democratic society should take account of public attitudes, and that elections alone can be a poor way of gauging the public's views on a range of issues'. Moreover, for some, public engagement is viewed as a remedy for many problems in current democratic societies such as 'falling voter turnout; lower levels of public participation in civic life; public cynicism towards political institutions and parties; and a collapse in once-strong political loyalties and attachments' (Coleman & Gotze 2010: 4). The OECD (2001) contends that public engagement can lead to better public policy, greater trust in government and stronger democracy. In this context public engagement is presented as a mechanism for strengthening democratic institutions (Pieczka & Escobar 2013).

4.14 Much has been written about public engagement in the development studies literature. Here it is widely acknowledged that appropriate policies and developments are best achieved through consultation and participation (Agrawal & Gibson 1999, Brown 2003, Holmes & Scoones 2000, Kothari 2001). 'Participatory approaches [...] are justified in terms of sustainability, relevance and empowerment' (Cooke & Kothari 2001: 5). It is seen that by involving local people in decision-making processes the outcomes will better reflect their interests and needs and will therefore be met with greater support or acceptance by those affected, which in turn leads to more sustainable policy outcomes (Kothari 2001).

4.15 Participatory techniques are also regarded to serve an educational role. It is considered that participants will benefit from sharing their own knowledge and perspectives whilst also engaging with 'expert knowledge' - hence gaining a better understanding of the issues in question. Equally, 'experts' involved in the process will learn from public (local/lay) knowledge, which, in many cases, may be substantial and relevant. This, Brown (2003) argues, leads to the creation of 'fusion knowledge' which could potentially be of great value. 'Transformational changes potentially occur to participating publics, stakeholders, organisations and institutions in the ways they frame and think about such issues, their acknowledgement of each other's understandings, visions and concerns, and their responses to the social (and other) implications of science' (Chilvers 2010: 33).

Why Engage the Public?

4.16 Wilsdon and Willis (2004: 39) summarise three main positions underpinning public engagement:

• a normative position suggests that 'such processes should take place because they are the right thing to do: dialogue is an important ingredient of a healthy democracy'
• an instrumental position holds that 'engagement processes are carried out because they serve particular interests'. For example: 'Governments may want to engage in order to build trust in science and manage their reputation for competence'
• a substantive perspective suggests that the goal of public engagement 'is to improve social outcomes in a deeper sense […] From this point of view, citizens are seen as subjects, not objects, of the process. They work actively to shape decisions, rather than having their views canvassed by other actors to inform decisions that are then taken'.
  

4.17 Related, INVOLVE (2004) (a non-profit organisation specialising in public participation) present a number of reasons for engaging with the public:

• public participants can provide different and valuable perspectives
• people who use services can help to ensure that the issues prioritised are important to them
• public involvement can help to ensure that money and resources are not wasted on research that has little or no relevance
• service-users can ensure that research doesn't simply measure outcomes deemed important by professionals
• service users can help with recruitment of peers (especially from marginalised groups)
• service users can help disseminate the results of research and ensure that changes are implemented
• involvement in research, done well, can help empower people who use services
• involvement of the public is becoming an increasing political priority

4.18 It is widely accepted that there can be practical benefits for organisations from creating opportunities for public engagement. Simultaneously, it is considered that engagement has benefits for wider society and for democratic institutions. For example, the National Consumer Council (NCC 2008) suggests that deliberative forms of public engagement can improve the quality of decisions and policy solutions whilst simultaneously enhancing representative democracy. INVOLVE (2005: 18) contend that a distinction can be made between mechanistic views which 'see participation as a very practical exercise of getting people's input on something' and humanistic views which see 'the main point of participation [as being] the expansion of people's horizons, social contracts and sense of their own power and ability' (this is similar to the distinction made between instrumental and substantive approaches to public engagement outlined above).

4.19 INVOLVE (2005: 20) summarise four main objectives of participatory activities within current public policy circles as being:

• 'GOVERNANCE: e.g. strengthening democratic legitimacy, accountability, stimulating active citizenship
• SOCIAL COHESION AND SOCIAL JUSTICE: e.g. building relationships, ownership and social capital, equity, empowerment
• IMPROVED QUALITY OF SERVICES: more efficient and better services, especially public services that meet real needs and reflect community values
• CAPACITY BUILDING AND LEARNING: for individuals and organisations, to provide a basis for future growth and development and, especially, to help build stronger communities.'
  

Forms of Public Engagement

4.20 There are many different ways in which public engagement can be conducted. Rowe and Frewer (2005) argue that although there is an international trend towards increased public involvement in policy areas, this is understood as meaning a variety of different things and in turn is used to describe a variety of different approaches and projects: 'involvement as widely understood (and imprecisely defined) can take many forms, in many different situations (contexts), with many different types of participants, requirements, and aims (and so on), for which different mechanisms may be required to maximize effectiveness (howsoever this is defined)' (Rowe and Frewer 2005: 252). The form and methods of public engagement adopted largely reflect the objectives or purpose of the exercise; therefore, public engagement can take many different forms in serving many different purposes.

4.21 Much of the literature refers to different levels of engagement. References are frequently made to Arnstein's (1969) ladder of public participation (see figure 2.1). Arnstein's model set out eight levels of participation which were broadly summarised as representing 'Non-Participation', 'Tokenism' and 'Citizen Power'. On the bottom rungs on the ladder (Non-Participation) public engagement is viewed as an opportunity to educate the public and/or engineer support. In the middle of the ladder, tokenistic forms of participation include informing and consulting members of the public. Arnstein suggested that both of these can be valuable first steps towards participation but that they are limited by the lack of influence which participants have. Consultation is described as being a 'window-dressing ritual'. A third form of tokenistic participation described by Arnstein is placation whereby 'a few hand-picked "worthy" poor' are placed on boards but given that 'the traditional power elite hold the majority of seats, the have-nots can be easily outvoted and outfoxed'. The top rungs of the ladder therefore require redistribution of power to members of the public.

Figure 2.1: Arnstein's (1969) Model of Public Participation

4.22 Arnstein's model has been adapted by various individuals and organisations writing on the topic of public engagement. For example, Wilcox (1994) simplifies Arnstein's model to arrive at five levels of participation: Information; Consultation; Deciding Together; Acting Together; and Supporting Independent Community Interests. A guidance document produced by Fife Council refers to three broad purposes of public consultation: Informing; Seeking Views; and Participation and Partnership. The International Association for Public Participation's (IAP2) (2007) 'spectrum' of public participation has five levels: Inform; Consult; Involve; Collaborate; and Empower. Rowe and Frewer (2005) have developed a typology of public engagement mechanisms which is structured around three main forms: Public Communication; Public Consultation; and Public Participation. These are just a few examples of many existing typologies or classifications of approaches to public engagement.

4.23 Although these models of public engagement use different terminology and different numbers of levels it is possible to identify common patterns and themes within them. Each starts with a 'bottom' layer of engagement which is essentially concerned with information provision. They then have one (or more) layer(s) with limited forms of public feedback into decision-making processes, and finally they each have a 'top' layer with more participatory forms of public engagement which give greater control to participants. In order to summarise these patterns three principle layers have been categorised by the broad aims of: Awareness Raising; Consultation and; Empowerment. Appendix B sets out which 'levels' from various models have been included under each heading.

4.24 The following is a summary of each of these main purposes and what they imply for the conduct of public engagement.

Awareness Raising

4.25 This category of public engagement is essentially concerned with the dissemination of information. Wilcox (1994: 10) describes this as 'a "take it or leave it" approach' which is used when there is little flexibility about what the outcomes will be and where the purpose is simply to inform the public. INVOLVE (2005: 18) suggest that this form of public engagement aims to 'provide the public with balanced and objective information to assist them in understanding the problem, alternatives and/or solutions'. Rowe and Frewer (2005: 255) note that at this level 'Information flow is one-way: there is no involvement of the public per se in the sense that public feedback is not required or specifically sought'. For some the one-way nature of Awareness Raising approaches mean that they should not be considered public engagement, unless they are combined with other approaches (such as consultation) (e.g. Dialogue by Design 2008).

4.26 As the most basic form of public engagement awareness raising is also the most limited in what it can achieve. In summary, awareness raising approaches involve one-way, top-down flows of information and are aimed at increasing awareness or understanding of particular issues.

Consultation

4.27 This form of public engagement seeks to elicit information from the public in order to inform decisions. It can involve (to varying degrees) two-way flows of information. Wilcox (1994: 11) contends that: 'Consultation is appropriate when you can offer some choices on what you are going to do - but not the opportunity [for the public] to develop their own ideas or participate in putting plans into action'. Through consultation, public views are sought and taken into consideration; however, there is no obligation that these views will necessarily be acted on (Dialogue by Design 2008, INVOLVE 2004).

4.28 Depending on how consultation is facilitated it could be either a one-way or two-way process. Rowe and Frewer (2005) contend that it is conducted as a one-way process since public opinion is sought on topics or questions which are chosen and/or designed by the sponsors and these do not necessarily reflect which topics members of the public consider most relevant. The OECD (2001: 16) suggest that, where participants are providing feedback on information previously provided to them by sponsors/facilitators, a 'limited two-way relationship' can occur. However, participants do not have power in or over the process since facilitators/sponsors define 'whose views are sought on what issue' (OECD 2001: 16).

4.29 It is frequently acknowledged that public engagement can be most effective and best-received by public participants when it is seen to be meaningful and influential (Dialogue by Design 2008, INVOLVE 2004, Wilsdon & Willis 2004). Wilcox (1994: 5) notes that public engagement processes (and their outcomes) are more likely to be successful if people 'feel they can achieve something' and that they 'are most likely to be committed to carry something through if they have a stake in the idea'. As such consultation is likely to be better received when it can be demonstrated that it will have meaningful outcomes and that public participants' contributions will be valued. Therefore, Sciencewise (2009: 6) advise that it is important to: 'Ensure that participants' views are taken into account, with clear and transparent mechanisms to show how these views have been taken into account in policy and decision-making'.

4.30 In summary, consultation approaches can involve either one-way or two-way flows of information. They enable public perspectives, opinions or values to be fed into decision-making processes. However, control over how the processes are set up and run and how the information gathered is used remains with the facilitators and/or sponsors. Consultation can be a valuable mechanism for reflecting public interests, but can also lead to disappointment and frustrations if participants feel that their views are not being taken seriously or that the exercise is used to legitimise decisions that have already been made.

Empowerment

4.31 Public engagement approaches classified under the heading of empowerment are those which would be positioned at the top of Arnstein's (1969) ladder of participation. These approaches involve giving control to public participants and aim to create benefits not simply for the decisions and/or projects under consideration, but also for the participants and broader society.

4.32 Empowerment can occur to varying degrees and is facilitated through a range of mechanisms. For example, this category includes the OECD's model of 'Active Participation' which is described as 'an advanced two-way relation […] based on the principle of partnership' (2001: 16). It also includes INVOLVE's (2004: 9) model of collaboration comprising 'active, on-going partnership with members of the public in the R&D process. For example, people who use services might take part in a steering committee for a research project, or collaborate with researchers to design, undertake and/or disseminate the results of a research project'. INVOLVE (2004) note several advantages and disadvantages associated with collaboration. Advantages include increasing relevance of outcomes, benefits in terms of recruitment of research participants, help with interpreting and understanding data and an increased sense of ownership of projects and results on the part of service-users. Disadvantages are higher costs of collaborative research (both in terms of time and resources), the need for extra skills relating to facilitation and negotiation and the loss of power/control on the part of researchers. Collaboration 'involves an active commitment from the researcher to collaborate, which means that control over research will be shared rather than being controlled only by research professionals' (ibid: 9).

4.33 Empowerment also includes Wilcox's (1994) category of 'Acting Together' in which 'different interests [not only] decide together what is best, but they form a partnership to carry it out' (Wilcox 1994: 8). This approach can involve 'short-term collaboration or forming more permanent partnerships with other interests' (ibid: 12). This requires 'a common language, a shared vision of what you want, and the means to carry it out' (ibid: 12).

4.34 Rowe and Frewer's (2005) typology includes the category of 'Public Participation' which can be seen to reflect aims of empowerment. In this model, 'information is exchanged between members of the public and the sponsors. That is, there is some degree of dialogue in the process that takes place (usually in a group setting), which may involve representatives of both parties in different proportions (depending on the mechanism concerned) or, indeed, only representatives of the public who receive additional information from the sponsors prior to responding' (Rowe & Frewer 2005: 255).

4.35 At a higher level of empowerment this category involves 'Supporting Independent Community Interests' (Wilcox 1994) which is a more hands-off approach on the part of facilitators whose role it is to help 'others develop and carry out their own plans […] this is the most "empowering" stance - provided people want to do things for themselves' (ibid: 13).

4.36 Empowerment is best illustrated through approaches which involve a high degree of participant control over the processes and outcomes. This reflects INVOLVE's (2004) category of User Control. They describe this as being 'broadly interpreted as research where the locus of power, initiative and subsequent decision making is with service users rather than with the professional researchers. It does not mean that service users undertake every stage of research, or that 'professional' researchers are necessarily excluded from the process altogether' (INVOLVE 2004:10).

4.37 Advantages of user controlled research noted by INVOLVE (2004: 11) include that:

• 'the research is likely to address questions which may not have been considered by researchers'
• 'innovative user-driven approaches can often reveal evidence otherwise missed by 'professional' researchers'
• 'service-users will be committed to 'disseminate the results of research to influence change in practice'
• 'both professional and public participants are likely to gain new skills'
• 'involvement in user-controlled research can be an empowering experience for service users who are often marginalised'

4.38 Identified disadvantages are:

• user control 'requires researchers to hand over 'ownership' of a project to people who use services. Some researchers (and funders) find this difficult or unacceptable'
• there is 'Potential for 'bias'
• 'the research may not be perceived as independent'
• cost and time implications associated with necessary training

4.39 In summary, approaches to public engagement characterised by the objective of empowerment involve giving a high degree of control (over both processes and outcomes) to public participants. It involves considerable flexibility about what is to be included since, ultimately, participants must be able to determine what is relevant. These approaches have enormous potential to produce outcomes which are appropriate in terms of reflecting public interests/concerns/opinions whilst simultaneously building capacity among participants and having spill-over positive impacts on wider society and democratic institutions. These forms of public engagement can be viewed as an essential component of building social capital (INVOLVE 2005).

Summary of Methods

4.40 Table 2.1 summarises these three broad categories of public engagement approaches. Importantly, these should not be viewed as mutually exclusive, but rather; 'they should be regarded as a spectrum of participatory strategies' (Coleman & Gotze 2010: 14). As The Wellcome Trust (2005: 11) have noted, 'serious efforts at public engagement are likely to employ a mixed strategy'. In practice public engagement exercises may use a range of methods reflecting different approaches and motivations. For example, public engagement can be carried out in order to raise awareness whilst simultaneously consulting the public on their views. Similarly, consultation can be done in ways which have empowering effects on participants (for example through capacity building). Ultimately, it is not possible to rank engagement approaches in terms of their merits since: 'Different levels are appropriate at different times to meet the expectations of different interests' (Wilcox 1994: 4). Figure 2.2 illustrates the range of public engagement methods that can be used to reflect different, and multiple approaches/motivations.

Table 2.1: Summary of Categories of Public Engagement

	Purpose	Desired Outcome	Potential Methods
Awareness Raising	Information provision and public education.	Greater public acceptance or legitimacy for policy/project.	Media campaign. Public exhibition/ presentations. Leaflets.
Consultation	To gain insight into public opinion/views.	Creation of appropriate/socially acceptable policy/project.	Surveys. Focus groups.
Empowerment	To work with the public enabling them to play key roles in decision-making.	Greater social capital. Capacity building. Enhanced democracy.	User panels. Citizens' juries.

4.41 It should also be noted that public engagement can take place in both formal and informal ways and is not necessarily always invited. Chilvers (2010: 11) notes that the 'distinction between invited and uninvited engagements is based on who is responsible for organising public dialogues. Uninvited engagements are initiated and organised by citizens mobilising themselves independently of formal decision institutions'. Uninvited public engagement is generally not formally structured but can be valuable in 'open[ing] up alternative framings and perspectives on science-related issues' (ibid.: 11).

Figure 2.2: Potential Methods for Each Category of Public Engagement

Public Involvement and Research Use of Personal Data

4.42 This section will present the findings of a desk-based literature review which explored the different methods that have been used to involve members of the public in research and/or decision making relating to the ways that their data are used. The principal objectives of the review were:

• to survey the range of public engagement methods that have been utilised in relation to the research and statistical use of personal data and data sharing
• to identify those methods that utilise an empowerment approach and assess how effective and efficient they have been, including what effect they have had on participants
• to develop recommendations for the most appropriate methods of involving citizens in decision making about how their data are used

4.43 The methods used in this review were described in chapter 2. A total of 51 papers and reports were included in the final review for this study. Each of these articles were read in their entirety and analysed in accordance with the typology of public engagement outlined above (i.e. to identify instances of awareness raising, consultation and empowerment).

Overview of Studies

4.44 Of the 51 papers and reports included in this review 38 reported results of studies or programmes involving public engagement activities (the remainder presented secondary analysis). The studies related to a range of national contexts including the UK, US, Canada, Australia, Japan, Spain, Saudi Arabia and Sweden. The studies which involved public engagement activities employed a variety of approaches including surveys and questionnaires; focus groups and deliberative workshops or events. There were examples of awareness raising, consultation and empowerment within the studies - and in many cases the studies can be seen to have aimed at and/or achieved more than one of these goals. Figure 3.1 represents a summary of the analysis of the studies in relation to these goals; this will be discussed in more detail below.

Figure 3.1: Classification of Studies

4.45 The studies included in this review discuss a range of subjects. Whilst there are some examples of studies engaging members of the public in relation to data sharing or data-linkage for research purposes, this is a new area and the literature is, as yet, limited. Accordingly, it was decided that it would be relevant and necessary for this review to include studies of public engagement in relation to other forms of data (e.g. genomic and genetic data) and consider public participation in a broader range of research approaches (e.g. biobanks). As such, this review draws on a broader, relevant body of literature and aims to point to lessons which can be learnt from more established fields.

Awareness Raising

4.46 There were no examples of studies which were aimed solely at awareness raising identified within the review. This is most likely due to the nature of the studies which were largely focussed on reporting public opinions and/or attitudes towards uses of data and, therefore, included consultative elements.

4.47 However, the majority of the studies included in this review (21) involved at least some element of awareness raising. This was evident in studies taking a qualitative approach to consultation (e.g. through focus groups or deliberative events) where information was provided in order to inform discussions or prompt responses. For example, Etchegary et al (2013) describe conducting 'hybrid information-consultation sessions' in order to explore public expectations and attitudes about genetics research. Similarly, deliberative workshops (reported by SHIP 2012; Davidson et al 2012; Halverson & Ross 2012; Parkin & Paul 2011; Bombard et al 2011; de Vries et al 2011 and 2010; Kim et al 2011; Lemke et al 2011; Rowe et al 2010; Willison et al 2008; MRC 2007; Damschroder et al 2007; and Armstrong et al 2006) involved presentations and/or written information materials circulated either before or during the events. In some cases participants had opportunities to prepare particular questions or set discussion topics for the events, or request particular further information. In these instances, awareness raising can be seen to be more than simply one-way flows of information, but rather forms part of a two-way dialogic process.

4.48 There were examples of studies where awareness raising was reported to lead to greater public acceptance of research uses of data (e.g. SHIP 2012, Kim et al 2011, Parkin & Paul 2011, MRC 2007) or reduced concern (King et al 2012, Lemke et al 2011). It was also reported that awareness raising was beneficial in engendering informed discussions which, in turn, led to considered responses to consultation (e.g. Lemke et al 2011, Bombard et al 2010, de Vries et al 2011). Further, it was reported that awareness raising activities were valued by participants who appreciated the opportunity to learn more about the subject under discussion (e.g. Etchegary et al 2013, SHIP 2012, de Vries et al 2011).

Consultation

4.49 All 38 of the studies reporting on public engagement activities involved consultation as a key (and in most cases primary) aim. The subject of the consultations varied a great deal. They included, for example: the acceptability of linking personal data for statistical and research purposes (Davidson et al 2012); privacy in healthcare (King et al 2012); attitudinal changes regarding biobank research governance (Halverson & Ross 2012); and incentives and barriers to participating in Alzheimer's disease clinical research (Jefferson et al 2011).

4.50 The methods used ranged in the extent to which they involved one-way or two-way flows of information and in the degree of control participants had within/over the process. For example, studies using quantitative methods such as questionnaires or surveys took a highly structured approach and captured participants' responses to particular pre-defined and fixed questions (e.g. Luchenski et al 2012, Ruiz-Canela et al 2011, Lofters et al 2011, Al-Qadire et al 2010, Kaufman et al 2009). Conversely, a number of studies used focus groups which represented a more flexible form of consultation where public opinions were explored through open-ended discussion which, whilst guided by facilitators, allowed participants to raise particular topics of interest and (re)direct the discussion (e.g. Aitken 2011, Haddow et al 2011, SHIP 2011, Trinidad et al 2010, Scottish Consumer Council 2005). This approach is more dialogic and involves two- or multi-way flows of information between participants and facilitators. There were also a number of studies which involved lengthier deliberative processes to explore public opinions whilst devolving greater control to participants (for example, in relation to the topics discussed, the format of the events or information that was provided). These more deliberative forms of engagement served the purpose of consultation but also provided opportunities for greater interaction between participants and facilitators (and in some cases relevant experts) and their content was determined in large part by the participants (e.g. SHIP 2012, Halverson & Ross 2012, Parkin & Paul 2011, Bombard et al 2011, de Vries et al 2011, Lemke et al 2011). As such, whilst all the studies had consultation as a key, if not primary, aim this was pursued and achieved in a number of different ways.

4.51 Key themes emerging from the review of these consultations were:

• privacy and confidentiality - addressing privacy concerns was widely reported to be crucial for fostering public support for research uses of personal data (e.g. King et al 2012, SHIP 2012 & 2011, Davidson et al 2012, Lofters et al 2011, Trinidad et al 2010, Kaufman et al 2009, MRC 2007, Asai et al 2002).
• control and consent - it was widely reported that members of the public wanted to be in control of how their data was used for research and often had a preference for consent-based governance models (e.g. King et al 2012, SHIP 2012 & 2011, Buckley et al 2011, MRC 2007, Willison et al 2007, Scottish Consumer Council 2005, Robling et al 2004). However, what this meant in practice was understood in a variety of ways (e.g. King et al 2012, SHIP 2011, Willison et al 2009, Willison et al 2008, Kettis-Linblad et al 2007).
• the public good - public participants were generally reported to acknowledge the value of research using personal data and/or the value of data-linkage for research or service-planning in the public interest (e.g. SHIP 2012, Davidson et al 2012, Aitken 2011, Parkin & Paul 2011, Trinidad et al 2010, Barrett et al 2006, Cousins et al 2005, Scottish Consumer Council 2005, Robling et al 2004).
• calls for greater public engagement and transparency - a number of studies reported that public participants had indicated a need for greater transparency relating to use of data in research and greater public engagement in order to engender public trust and acceptance (e.g. Etchegary et al 2013, Davidson et al 2012, SHIP 2012 & 2011, Armstrong et al 2006).

Empowerment

4.52 Twelve studies were classified as taking an empowerment approach. These are studies which devolve power to participants over the engagement process and outcomes and include deliberative workshops (SHIP 2012, Davidson et al 2012, Halverson & Ross 2012, Lemke et al 2011, Rowe et al 2010, Damschroder et al 2007), a citizens' jury (Parkin & Paul 2011), a citizens' panel (Bombard et al 2011), deliberative democracy sessions (de Vries et al 2011 & 2010, Kim et al 2011), and public dialogues (Willison et al 2008). Table 3.1 summarises the key features of these methods.

Table 3.1: Key features of empowerment approaches

Method	Format	Participants	Outcomes
Deliberative Workshops	These were generally half-day events where members of the public listened to presentations, took part in small group discussions and in some cases voted on key issues or completed questionnaires.	Invited members of the public. Typically around 30 participants per workshop. Some studies aimed for a representative sample while others aimed to include a diversity of views.	The workshops aimed to facilitate informed discussions. Participants' views were captured via recorded and/or noted group discussions, electronic voting and questionnaires. Participants were reported to value the opportunity to learn more about the subject, to listen to and meet experts and to discuss the subjects in depth. In some - but not all - cases participants' attitudes were reported to have changed over the course of the workshops.
Citizens' Jury	These run over a period of several days. They are overseen by a steering group of relevant stakeholders who set the questions for the jury to consider and select experts and jurors for participation. Participants listen to and question experts. They deliberate as a group and at the close present their verdict - usually a set of recommendations.	Around 12 participants. Selected by the steering group to be representative of the wider population.	Parkin & Paul (2011: 152) reported that their citizen jury unanimously decided 'that researchers contracted by a public body should [in specific circumstances and subject to safeguards] be permitted to use medical information about identifiable people, without their consent […] Six jurors reported that their views on the question had changed during the jury hearing. The reasons cited were the information provided by the expert witnesses, learning that there were systems (legal and ethical) in place to oversee the use of medical information, and having the opportunity to discuss these matters with their fellow jurors. Two others reported feeling more confident about their original views (both supported the use of medical information)'
Citizens' Panel	Citizens' Panel members are engaged in informed, facilitated discussion over a period of time. In Bombard et al's (2011) study this took place over five 1-day structured deliberation sessions. Material on each deliberation topic and a set of discussion questions were circulated one week in advance of each meeting. Each meeting involved discussions, summary presentations by the facilitator or guest presenter, Q&A sessions and either externally-facilitated or self-facilitated discussion around pre-circulated questions in large and small groups. Questionnaires were also completed before and after the process.	Bombard et al's panel consisted of 14 members, selected through a stratified random sampling method in order to be representative of the wider public.	Bombard et al (2011: 140) concluded that: 'Public engagement offers an informed and participatory approach to eliciting ethical and social values in [Health Technology Assessment]. Deliberation about the use and diffusion of new health technology fostered a process of making public values explicit. This participatory process allowed members to find common ground around trade-offs and collectively articulate values to guide decision-making. Our results demonstrate that participatory approaches, which employ sustained deliberations, are a feasible method to elicit a core set of ethical and social values inherent in health technology assessment.'
Deliberative Democracy Sessions	Day-long deliberative events. Participants take part in small group discussions, listen to plenary talks and deliberate in small groups on particular dilemmas or topics.	Invited members of the public, identified to represent particular groups. (Could also be conducted with a representative sample).	Participants deliberate on particular questions based on the information they have heard and the discussions they have taken part in throughout the day. De Vries et al (2011) have contended that it is important to build evaluation into the design of deliberative democracy sessions in order to develop a best practice model. Kim et al (2009) contend that the important features to pay attention to in designing deliberative democracy sessions are ensuring access to accurate, balanced, and understandable materials, knowledgeable experts, well-trained facilitators, and adequate facilities and resources.
Public Dialogues	Day-long deliberative events. Participants receive background information in advance. The events consist of plenary presentations and small group discussions. Questionnaires are administered before and after in order to assess impact on participants' opinions.	Between 15 and 20 participants per event. Willison et al's (2008) events took place across Canada in order to represent regional differences.	Willison et al's (2008) public dialogues relating to consent for access to personal information for health research found that 'broad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use'.

4.53 These studies can be viewed as empowering participants through devolving control (to varying degrees) over the engagement processes and outcomes. Additionally, many of these exercises can be seen to empower participants through the development of new skills (e.g. in relation to deliberation or public speaking). However, empowerment can also be achieved in a number of other, often unpredicted (or even unpredictable), ways. For example, participants might be viewed to have been empowered through participation in an engagement process if this resulted in greater understanding of issues relevant to their life or in increased confidence to participate in other engagement processes or other areas of civic life. Empowerment can be viewed as being served through individual or social capacity building. Accordingly, whilst empowerment may not have been one of their key goals, there are a number of additional studies within our review which might have had impacts which could be classified as empowering. Participants might be empowered through participation in focus groups (e.g. Aitken 2011, Haddow et al 2011, SHIP 2011, Trinidad et al 2010, Scottish Consumer Council 2005), public information-consultation sessions (Etchegary et al 2013) or reconvened discussion groups (Armstrong et al 2006).

4.54 It is noteworthy that all of the studies classified as taking an empowerment approach in this review combine awareness raising, consultation and empowerment. Consultation - where this is meaningful in its scope and impact - can be a valuable means of empowering citizens through creating opportunities for public views and/or preferences to inform decision-making. Conversely, consultation which is not meaningful (i.e. where members of the public are asked for their views but these have no impact or are not taken on board within decision-making processes) can have the opposite effect and rather than empowering participants may in fact lead to disillusionment and future disengagement. Awareness raising may be a crucial component of empowerment as it broadens participants' horizons and presents opportunities for learning, hence facilitating more meaningful forms of participation and consultation. As such, including elements of each of these approaches is helpful for pursuing citizen empowerment. However, empowerment requires more than simply awareness raising and consultation, but also devolution of power to participants in engagement processes and/or capacity building. Participants must be at the heart of empowerment approaches.

Evaluation of Empowerment Methods

4.55 While studies included in our review typically commented on the value of the consultation elements of their approaches (e.g. in providing insights into public attitudes and values and facilitating informed deliberations), very few of the studies explicitly evaluated how the engagement process was experienced by participants or to what extent/in what ways participants were empowered.

4.56 Nevertheless, there was some evidence that participants generally appreciated the opportunity to take part in these activities and found this to be a rewarding process. For example, Parkin and Paul (2011) note that participants in their Citizen Jury in evaluating the process commented on the knowledge they gained. The jurors also demonstrated an enthusiasm for the process in that their final deliberation session ran for some four hours. Similarly, Damschroder et al (2007: 226) commented that participants in their deliberative workshops were 'engaged in the process, showing near-instant camaraderie and high levels of respect for one another'. Participants in the SHIP (2012) deliberative workshops commented that they found the workshops both informative and enjoyable and that they would welcome opportunities to participate in further related engagement opportunities. Moreover, workshop participants felt that 'the public should be involved in governance processes or should play a role in overseeing uses of personal data in research' (SHIP 2012: 4). As such, public engagement activities have uncovered - and perhaps fostered - an appetite for greater public engagement in relation to uses of data in research.

4.57 De Vries et al (2010 & 2011) have highlighted the importance of evaluating deliberative engagement processes in order to develop a best practice model. They propose a framework for evaluating the quality of deliberative processes. This points to key considerations which are summarised under three headings (Process, Information and Reasoning) (De Vries et al 2011: 3-5):

Process

• facilitation - 'Good facilitators keep the discussion moving forward, keep participants on task, encourage participation, and elicit viewpoints from all participants. Good facilitators are also good listeners who avoid inserting their own opinions in the discussion, while managing unanticipated problems and keeping the discussion within the time allotted'
• equality of participation - 'Word counts and "turns taken" by participants are direct and simple measures of participation, but are, of course, qualified by the recognition that perfect equality of contributions is not necessary for good deliberation'
• participant engagement - 'Is there evidence of genuine dialogue and interchange of ideas?'
• respect - 'Positive group dynamics and amicability- even when there are disagreements-are indicators of a respectful process'

Information

• use of on-site experts -'Do the participants appropriately recognize when more information is needed, and then seek out further information from the on-site experts?'
• use of incorrect information - 'It is important to be alert to instances where incorrect information enters the conversation […] What impact, if any, did such errors have on the direction of the deliberations?'
• learning new information - 'This can be measured by assessing unprompted remarks in the transcripts, as well as by self-report questionnaires to assess any change in knowledge'
• understanding and application of information - 'In general, it is important to assess whether the deliberators are actually using the information presented'
• impact of information on opinions - 'How does the new information learned affect opinion?'

Reasoning

• justification of opinion - 'considers how participants justify their positions on the issues discussed. Do they give reasons based on what they have learned? Do they call upon a moral framework?'
• openness to complexity - 'Deliberative exercises are used to gather public opinion when the policies in question are complicated and in dispute. It is important that participants recognize this complexity and avoid simplistic responses'
• adoption of a societal perspective - 'Public-spiritedness is critical to the success of public deliberations […] Evidence of this attitude can be found in the willingness of participants to take the point of view of a policy-maker, rather than looking at the issue only from how it affects their personal situation'

4.58 De Vries et al's framework provides a useful resource for evaluating the quality of deliberative events. However, in order to evaluate the extent to which, and in what ways, participants are empowered through the process this would need to be supplemented by additional research at some time after the deliberative events. Empowerment effects should endure beyond the lifetime of the engagement process

Summary

4.59 The review has highlighted that a range of public engagement methods have been used to involve members of the public in decision-making processes relating to uses of data in research. The subjects of the engagement processes included in this review are diverse but the experiences reported provide relevant and valuable insights.

4.60 The studies included in this review were predominantly focussed on consultation as a key aim. However, there were many examples of studies combining consultation with awareness raising and empowerment. It is noteworthy that each of the instances which have been classified as taking an empowerment approach included both consultation and awareness raising - this may be a necessary approach to take in developing empowering forms of public engagement in the future.

4.61 The examples of empowerment approaches discussed here typically involved deliberative events through which participants received information about the particular topic, had opportunities to ask questions and took part in group discussions. The outcomes of the processes varied. While evaluations of the extent of empowerment are lacking, it is reasonable to state that where the results of deliberative consultations do not inform decision-making or policy-making processes the empowering effects will be limited. In such instances there is a risk that participants become disillusioned with engagement processes. As such, whilst the review points to examples of relevant methods to be used in empowering approaches, it is important to bear in mind that such an approach requires a meaningful commitment to act on the outcomes of public engagement.

Summary and implications

4.62 Public engagement can take many different forms and serve many different purposes. Public engagement can be pursued in instrumental ways - as a mechanism to be used to achieve particular ends such as understanding public opinions or fostering public trust. Conversely, public engagement can be focussed at substantive impacts such as building capacity amongst participants and empowering citizens.

4.63 In this literature review we have presented our tripartite classification of public engagement approaches in order to illustrate the three key objectives that public engagement typically pursues - awareness raising; consultation; and empowerment.

4.64 In reviewing the different ways that citizens have been involved in decision-making processes relating to uses of data in research we have focussed principally on identifying studies which took an empowerment approach. However, it is noteworthy that each of the studies which are classified as taking an empowerment approach also involved awareness raising and consultation. This highlights that public engagement can serve multiple purposes simultaneously.

4.65 The review suggests that including elements of awareness raising and consultation within public engagement activities may be helpful for maximising empowerment of participants. It was reported in a number of studies that participants valued the opportunity to learn more about the subject and to engage with experts. Awareness raising also has valuable roles to play in informing deliberation. However, in empowerment focussed public engagement, awareness raising should be more than one-way communication. Consultation can also be a valuable method for empowering citizens where this meaningfully informs decision-making or policy-making processes.

4.66 The examples of empowerment approaches discussed in this review typically involved deliberative events through which participants received information about the particular topic, had opportunities to ask questions and took part in group discussions.

4.67 Empowerment can be pursued in a number of ways, and might be achieved through involving citizens in decision-making processes, or through capacity building amongst participants. Whilst the review points to examples of relevant methods to be used in empowering approaches, it is important to bear in mind that such an approach requires a meaningful commitment to act on the outcomes of public engagement. Furthermore, participants must be at the heart of empowerment-focussed methods.