**Citizens' Juries: When Older Adults Deliberate on the Benefits and Risks of Smart Health and Smart Homes**

**Neil H. Chadborn 1,\* , Krista Blair <sup>2</sup> , Helen Creswick <sup>3</sup> , Nancy Hughes <sup>4</sup> , Liz Dowthwaite <sup>3</sup> , Oluwafunmilade Adenekan <sup>5</sup> and Elvira Pérez Vallejos 3,5,6**


Received: 28 February 2019; Accepted: 27 March 2019; Published: 1 April 2019

**Abstract:** *Background*: Technology-enabled healthcare or smart health has provided a wealth of products and services to enable older people to monitor and manage their own health conditions at home, thereby maintaining independence, whilst also reducing healthcare costs. However, despite the growing ubiquity of smart health, innovations are often technically driven, and the older user does not often have input into design. The purpose of the current study was to facilitate a debate about the positive and negative perceptions and attitudes towards digital health technologies. *Methods*: We conducted citizens' juries to enable a deliberative inquiry into the benefits and risks of smart health technologies and systems. Transcriptions of group discussions were interpreted from a perspective of life-worlds versus systems-worlds. *Results*: Twenty-three participants of diverse demographics contributed to the debate. Views of older people were felt to be frequently ignored by organisations implementing systems and technologies. Participants demonstrated diverse levels of digital literacy and a range of concerns about misuse of technology. *Conclusion:* Our interpretation contrasted the life-world of experiences, hopes, and fears with the systems-world of surveillance, efficiencies, and risks. This interpretation offers new perspectives on involving older people in co-design and governance of smart health and smart homes.

**Keywords:** smart health; older people; co-design; digital life-world; smart cities

#### **1. Background**

Smart cities is a public-policy term for the move towards cities with an increasingly digital infrastructure that enables the real-time monitoring and management of key services in response to changing contexts, typically within transport and traffic management, energy, water, waste, and healthcare. The latter is becoming an increasingly significant area, with "smart health" being a newly coined term to describe the emerging health paradigm enabled by such an infrastructure. According to Solanas et al [1], "Smart health (s-health) is the provision of health services by using the context-aware network and sensing infrastructure of smart cities." Indeed, with an increasing proportion of the population being over 65 years of age [2], and with continuing constraints on

resources, assumptions are made that digital technology will be the solution to improve the lives of older people whilst also reducing health and care costs [2] (p.9). Indeed, being able to deliver "smart", efficient, personalised health solutions data is key to communicating with users to enableing older people (and their carers and associated health professionals) to monitor and manage their own healthcare and ultimately "age in place" [3].

Despite considerable investment in smart cities, there continues to be low public awareness of the concept. This may be due in part to an overriding emphasis on technology as opposed to engaging with citizens or users; although this focus is starting to shift, as "while citizens tend to be the implied beneficiaries of smart city projects, they are rarely consulted" [4]. Indeed, in an The Institute of Engineering and Technology report [5] in 2016, less than one in five of the general population (18%) were aware of the term "smart city" and only 6% of older people (over 65 years) were aware of the term. The latter, in particular, signals a real challenge when considering the development of healthcare solutions for older people within a smart cities context. It is, therefore, crucial to understand the potential for the involvement of this key stakeholder group, i.e., older people.

It should be said, however, that whilst "smart health" is a relatively new concept, espousing all things digital, data-driven, and connected, there exists a strong body of research relating to more traditional technology-enabled healthcare and assistive technologies (telecare, telehealth, and telemedicine) [6,7] and a wealth of systematic reviews [8]. Nevertheless, despite "people" (older adults, care-givers, healthcare professionals) being the primary focus of such research, there still exists a general lack of understanding of the real needs of such stakeholders, compounded by a further lack of awareness of underlying attitudes, perceptions, and potential barriers to acceptance and use. Indeed, much technology-enabled healthcare research continues to focus on the technical and clinical aspects as opposed to the more subjective conditions of use [9]. There is clearly a need to involve older people/citizens fully in the development of any technology-enabled or smart healthcare initiatives, and ideally at the earlier stages of policy and service development, rather than positioning them as the testers or consumers of technology in pilot or trial settings is crucial [10]. Despite work to engage patients and the public in strategic decision making about health services, there remains a lack of consensus about how such initiatives should operate and which patients should be involved [11].

Research on stakeholder views in the field of telehealth also suggests that there may be a considerable divergence of goals between older people and other stakeholders. In a discourse analysis of 68 publications and 10 knowledge-sharing events on telehealth and telecare, Reference [7] identified four separate competing discourses that tended to "talk past one another"—that is to say, that operated with different assumptions, values, and goals, with little cross-fertilisation. Significantly, they found that these separate discourses tended to map onto different stakeholders, as follows. The modernist discourse was employed by policymakers, the technology industry, and biomedical and health informatics researchers, and it conceptualises technology as the driver and older people as passive consumers. The humanist discourse of older people as active subjects was a separate, more marginalised discourse. Similarly, Peek et al. [12] investigated the aims of different stakeholder groups involved in technology for ageing in place. Whilst stakeholders may agree on aims, the different perspectives held could be problematic in choice and implementation of technology.

The divergence between the views and experience of older people who are being asked to use technology and younger adults who are more likely to be designing and making decisions about implementation of digital technology has been labelled as the "digital divide". While recognising potential generational inequalities, there is a risk that use of such language and terms such as "digital immigrant" may not be supported by evidence and risk exacerbating stereotypes and stigma [13]. We have interpreted these challenges by drawing on the theory of Communicative Action developed by Habermas [14]. Experience of our personal daily lives, for example our desire for privacy, are part of our life-world, whereas the bureaucratic system of local government and local services tend to form a network of the systems-world. Habermas described the concern of the systems-world encroaching and controlling the life-world, sometimes as a result of corporate interests; this he named colonisation

of the life-world. Digital interactions and communication have the potential to form new modes of communication; thus, they have the potential to extend our life-worlds. However, systems are necessarily developed and owned by corporations (private or public); therefore, digital systems are fundamentally systems-world [15]. Taking this perspective, we can consider the negotiation or exchange which may occur, often implicitly, between the individual and the system, in terms of whether digital systems serve the purpose of the life-world or systems-world.

Partly to counter some of these concerns, co-production or co-design has been advocated as a way to enable end users to have a significant voice and to enable technologies and systems to be designed in a way that is "user-friendly" and accountable to populations (especially local communities). The concept of co-production can be applied to citizen involvement at different stages of the planning, implementation, and review of health and social care solutions [16]. Here, we explore the potential for smart health to be co-produced with older citizens in the UK.

#### **2. Methods**

We held initial engagement sessions to co-design the topics and develop personas [17,18] for the citizens' juries. We then held two citizens' juries in Nottingham, UK. People who had attended the initial engagement sessions were invited to the second citizens' jury (B), and therefore, we expected their views and opinions to have developed from the initial meeting. Whereas, for the first citizens' jury (A), we invited people who were new to the project, and thus, we expected their views may be novel or they may have less awareness of the topics.

#### *2.1. Participants*

We engaged with many different stakeholders and networks to recruit participants for the project, including; Vulnerable Adults Provider Network (Nottingham Community and Voluntary Service), Age-Friendly Nottingham Steering Group, Nottinghamshire County Council, Nottingham City Council, Self Help UK and Healthwatch Nottingham. We especially contacted organisations who could help us to reach more vulnerable older residents such as those from Black Asian and minority ethnic communities, and those with disabilities or mental health needs.

For the initial engagement meetings, we also invited staff or volunteers of organisations which engaged with older people. These stakeholders did not participate in jury sessions. In total, 34 people attended these two preparatory meetings. In total three personas were developed but only one was used to prompt discussions within the citizens' juries.

All participants of the citizens' juries filled out a consent form, demographics questionnaire and a survey designed to assess attitudinal change before and after each of the citizen's juries. In total, 23 participants took part in the citizen's juries: 9 attended Jury A (participants were new to the project) and 14 attended Jury B (participants had previously attended the initial co-design workshop of the project). The age range for both juries was 60–70. Gender was roughly even in both juries, with 4 females in Jury A (44%), and 9 females in Jury B (64%)

#### *2.2. Materials and Procedure*

The citizens' jury methodology is described in detail in several studies [19–21]. Both jury sessions took the same format over approximately 4 hours including lunch and refreshment breaks. Each session was audio-recorded for later transcription. Participants were first asked to complete a pre-session survey consisting of 9 brief multiple-choice questions which aimed to gauge the level of knowledge participants had and their existing opinions about issues of relevance. These included questions such as "How often do you use technology such as the following: mobile phone, motion sensors or alert systems?" and the possible answers: "Several times a day"; "Sometimes"; "Rarely" or "Never"; or questions such as "Who should design health technology applications for well-being?" and possible answers: "Technology developers"; "Technology consumers"; "Local government"; "All of all the

above"; and "Other, please write a few words", (see Supplementary Citizens' Jury Post-session Survey for details).

Participants were then presented with a series of dilemmas and encouraged to discuss the issues that each dilemma raised (see two examples below and a summary of topics discussed is shown in Table 1). The topics for the dilemmas were developed in the preparatory meetings. Furthermore, participants were asked for their recommendations on how to address the dilemma or problem presented to them. The juries were all moderated by an experienced facilitator, an adult previously unknown to the participants and who was not presented as an authority figure. The facilitator made sure all participants had the chance to be heard, with all experiences, viewpoints, and recommendations seen as valid and respected by all members of the jury. The sessions were guided in a way that was not leading or instructive so as not to prescribe opinions. Discussions took the form of a deliberation after each dilemma was presented, around two tables of 4 to 7 participants. This allowed participants to share opinions with the emphasis being that there were no right or wrong answers.

**Table 1.** Table of topics and dilemmas discussed within the citizens' juries.


Examples of the dilemmas include:

**3. Results** 

*3.1. Participants' Demographics (Table 2)* 

*3.2. Opinion Survey: Pre-Jury and Post-Jury* 

attitudes.

Safety monitoring versus concerns of loss of independence: Assistive technology and monitoring in the home may benefit people by offering support and to reassure people of safety. However, some people may feel that monitoring implies "keeping tabs" on them and that this may reduce privacy and independence.

Data-sharing and privacy: If someone's medical information was shared with their social worker then this may avoid duplication of the same questions. On the other hand, there was a concern for privacy; will the individual know and have control over who has access to personal data?

These dilemmas were presented to be discursive rather than prescriptive, to prompt responses and recommendations, and a persona (see Figure 1) was also created as a way to tell a story about how an individual may be a *Healthcare*  ffected by digital technologies and how this may affect their health. **2019**, *7*, x 5 of 17

**Figure 1.** Persona created as a way to tell a story about how an individual may be affected by digital technologies and how this may affect their health. **Figure 1.** Persona created as a way to tell a story about how an individual may be affected by digital technologies and how this may affect their health.

**Table 2.** Self-reported characteristics and beliefs of participants.

**Total participants (***n* **= 23) Jury A (***n* **= 9) Jury B (***n* **= 14)** 

Gender Female 44% (*n* = 4) 64% (*n* = 9) Male 56% (*n* = 5) 36% (*n* = 5) Age Younger than 60 0 0 60–70 44% (*n* = 4) 50% (*n* = 7) 70–80 44% (*n* = 4) 36% (*n* = 5) Older than 80 2% (*n* = 1) 14% (*n* = 2) Religion No religion 56% (*n* = 5) 29% (*n* = 4) Christian 33% (*n* = 3) 57% (*n* = 8) Unitarian 11% (*n* = 1) 0 Wiccan 0 7% (*n* = 1) Prefer not to say 0 7% (*n* = 1)

Activity limitation Very limited 2% (*n* = 1) 44% (*n* = 4) Limited 44% (*n* = 4) 0 No 33% (*n* = 3) 50% (*n* = 7) Prefer not to say 2% (*n* = 1) 21% (*n* = 3) Health Good 22% (*n* = 2) 57% (*n* = 8) Fair 88% (*n* = 7) 36% (*n* = 5) Bad 0 7% (*n* = 1) Ethnicity White British 100% (*n* = 9) 72% (*n* = 10) White Other 0 7% (*n* = 1) Caribbean 0 21% (*n* = 3)

This section compares responses from the pre- and post-surveys between the two groups. We were interested in whether participation within the jury led to changes in attitudes, and therefore, we invited people who were new to the project to one group, Jury A, whereas people who had attended the initial engagement meeting, and therefore had experience within the project were invited to Jury B. However, none of the survey differences between juries were significant when applying nonparametric statistic *χ2*, thus, prior involvement in the project did not appear to significantly change

This survey (see supplementary) consisted of 3 brief multiple-choice questions designed to measure attitudinal change, followed by a series of 15 statements designed to measure opinion on the issues raised; 10 statements were scored on a Likert scale from 1 (agree very little) to 10 (agree very much), and 5 were scored on a Likert scale from 1 (applies to me very little) to 10 (applies to me very much). Statements covered similar issues to those from the pre-survey including benefits/risks of health technology for society and perceptions on influencing decision making.

#### **3. Results**

*3.1. Participants' Demographics (Table 2)*



#### *3.2. Opinion Survey: Pre-Jury and Post-Jury*

This section compares responses from the pre- and post-surveys between the two groups. We were interested in whether participation within the jury led to changes in attitudes, and therefore, we invited people who were new to the project to one group, Jury A, whereas people who had attended the initial engagement meeting, and therefore had experience within the project were invited to Jury B. However, none of the survey differences between juries were significant when applying non-parametric statistic χ *2* , thus, prior involvement in the project did not appear to significantly change attitudes.

#### 3.2.1. Pre-Jury Survey

The pre-session survey revealed that at least two-thirds of the respondents in both juries use technology; the majority use technology several times a day. Additionally, a majority of people in both juries felt it was at least quite important for older people to use new technologies (93.3% of the group who had experience with the project, 66.6% of the group who were new to the project).

Most respondents in group A, who were new to the project, (85.7%) said that "Smart City Nottingham" made them feel interested about future opportunities. Whilst, in the group who had experience with the project (B), a large proportion of the respondents were split between being

interested (44%) and concerned about technology (44%). In regard to the influence smart cities have over the future of healthcare of older people, responses in both group sessions were varied. A large number of the new group (A) did not know how much influence smart cities had (44.4%). Whereas in the group with experience with the project (B), the responses were mixed. This indicates that there were a range of perspectives within both groups. The range of views expressed addresses any concerns that the project may have recruited a self-selecting group; for example, people who were very critical or cynical of digital innovation.

People of different ethnicities have been described as experiencing a digital divide in a similar way to older people [22]. We have involved participants of different ethnicities and religions, as shown in Table 2, indicating that we have a mixed group of participants; however, we did not aim to analyse these intersectionalities.

A majority of both juries believed that they should have an influence in the designing of assistive technologies (77.8% and 54.5% in the new group and the group with prior experience, respectively). When asked who should design and implement health applications, a majority of respondents on both juries said that this should be a mix of technology consumers and local governments. In regard to whether the respondents thought about the ethical consequences of health technologies, at least two-thirds of both juries revealed that it is something they thought about a least a little bit.

#### 3.2.2. Post-Jury Survey

Participants were asked to complete a survey immediately after the jury session in order to assess whether topics raised within the discussion had prompted concerns or changes in views. After the session, when asked who should be accountable if smart technologies go wrong, a majority of the group new to the project (A) answered "Other services" (55.6%) with smaller responses opting for the "Manufacturer" and the "Health Services" (Figure 2). Whilst the greatest response of the group who had experience with the project was tied between "Other services" (38.5%) and "Manufacturer" (38.5%).

When asked if the participants had learnt anything new about assistive technologies, at least two-thirds of both juries said they had learnt at least "A little" (84.6% and 66.6%, in the groups with prior experience and new to the project, respectively).

In regard to whether the participants had come up with new ideas about how to increase accessibility of smart cities for older people, a majority of respondents in both juries reported that new ideas emerged during the sessions (69.2% and 66.7% in the groups with prior experience and new to the project, respectively), whilst around a third in both juries reported no new ideas had emerged during the sessions.
