Objective Companion robots, such as Paro, may reduce agitation and depression for older people with dementia. However, contradictory research outcomes suggest robot design is not always optimal. While many researchers suggest user-centred design is important, there is little evidence on the difference this might make. Here, we aimed to assess its importance by comparing companion robot design perceptions between older people (end users) and roboticists (developers). Design Older people and roboticists interacted with eight companion robots or alternatives at two separate events in groups of two to four people. Interactions were recorded, participants’ comments and observations were transcribed, and content was analysed. Subsequently, each group participated in focus groups on perceptions of companion robot design. Discussions were recorded and transcribed, and content was analysed. Participants and settings Seventeen older people (5 male, 12 female, ages 60–99) at a supported living retirement complex, and 18 roboticists (10 male, 8 female, ages 24–37) at a research centre away-day. Results We found significant differences in design preferences between older people and roboticists. Older people desired soft, furry, interactive animals that were familiar and realistic, while unfamiliar forms were perceived as infantilising. By contrast, most roboticists eschewed familiar and realistic designs, thinking unfamiliar forms better suited older people. Older people also expressed desire for features not seen as important by developers. A large difference was seen in attitude towards ability to talk: 12/17 (71%) older people but only 2/18 (11%) roboticists requested speech. Older people responded positively towards life-simulation features, eye contact, robot personalisation and obeying commands, features undervalued by roboticists. These differences were reflected in preferred device, with ‘Joy for All’ cat chosen most often by older people, while roboticists most often chose Paro. Conclusion The observed misalignment of opinion between end users and developers on desirable design features of companion robots demonstrates the need for user-centred design during development.

Introduction: The importance of meaningfully involving patients and the public in digital health innovation is widely acknowledged, but often poorly understood. This review, therefore, sought to explore how patients and the public are involved in digital health innovation and to identify factors that support and inhibit meaningful patient and public involvement (PPI) in digital health innovation, implementation and evaluation.Methods: Searches were undertaken from 2010 to July 2020 in the electronic databases MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and ACM Digital Library. Grey literature searches were also undertaken using the Patient Experience Library database and Google Scholar.Results: Of the 10,540 articles identified, 433 were included. The majority of included articles were published in the United States, United Kingdom, Canada and Australia, with representation from 42 countries highlighting the international relevance of PPI in digital health. 112 topic areas where PPI had reportedly taken place were identified. Areas most often described included cancer (n = 50), mental health (n = 43), diabetes (n = 26) and long‐term conditions (n = 19). Interestingly, over 133 terms were used to describe PPI; few were explicitly defined. Patients were often most involved in the final, passive stages of an innovation journey, for example, usability testing, where the ability to proactively influence change was severely limited. Common barriers to achieving meaningful PPI included data privacy and security concerns, not involving patients early enough and lack of trust. Suggested enablers were often designed to counteract such challenges.Conclusions: PPI is largely viewed as valuable and essential in digital health innovation, but rarely practised. Several barriers exist for both innovators and patients, which currently limits the quality, frequency and duration of PPI in digital health innovation, although improvements have been made in the past decade. Some reported barriers and enablers such as the importance of data privacy and security appear to be unique to PPI in digital innovation. Greater efforts should be made to support innovators and patients to become meaningfully involved in digital health innovations from the outset, given its reported benefits and impacts. Stakeholder consensus on the principles that underpin meaningful PPI in digital health innovation would be helpful in providing evidence‐based guidance on how to achieve this.Patient or Public Contribution: This review has received extensive patient and public contributions with a representative from the Patient Experience Library involved throughout the review's conception, from design (including suggested revisions to the search strategy) through to article production and dissemination. Other areas of patient and public contributor involvement include contributing to the inductive thematic analysis process, refining the thematic framework and finalizing theme wording, helping to ensure relevance, value and meaning from a patient perspective. Findings from this review have also been presented to a variety of stakeholders including patients, patient advocates and clinicians through a series of focus groups and webinars. Given their extensive involvement, the representative from the Patient Experience Library is rightly included as an author of this review.

Background: International advances in information communication, eHealth, and other digital health technologies have led to significant expansions in the collection and analysis of personal health data. However, following a series of high-profile data sharing scandals and the emergence of COVID-19, critical exploration of public willingness to share personal health data remains limited, particularly for third-party or secondary uses. Objective: This systematic review aims to explore factors that affect public willingness to share personal health data for third-party or secondary uses. Methods: A systematic search of 6 databases (MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and SocINDEX) was conducted with review findings analyzed using inductive-thematic analysis and synthesized using a narrative approach. Results: Of the 13,949 papers identified, 135 were included. Factors most commonly identified as a barrier to data sharing from a public perspective included data privacy, security, and management concerns. Other factors found to influence willingness to share personal health data included the type of data being collected (ie, perceived sensitivity); the type of user requesting their data to be shared, including their perceived motivation, profit prioritization, and ability to directly impact patient care; trust in the data user, as well as in associated processes, often established through individual choice and control over what data are shared with whom, when, and for how long, supported by appropriate models of dynamic consent; the presence of a feedback loop; and clearly articulated benefits or issue relevance including valued incentivization and compensation at both an individual and collective or societal level. Conclusions: There is general, yet conditional public support for sharing personal health data for third-party or secondary use. Clarity, transparency, and individual control over who has access to what data, when, and for how long are widely regarded as essential prerequisites for public data sharing support. Individual levels of control and choice need to operate within the auspices of assured data privacy and security processes, underpinned by dynamic and responsive models of consent that prioritize individual or collective benefits over and above commercial gain. Failure to understand, design, and refine data sharing approaches in response to changeable patient preferences will only jeopardize the tangible benefits of data sharing practices being fully realized.

Background: Globally, pressure is increasing on health and social care resources due to the aging population and growing prevalence of dementia. Companion robots, such as Paro, demonstrate strong potential for helping reduce this pressure through reported benefits including reduced agitation, depression, loneliness, care provider burden, and medication use. However, we previously identified that user-centered design of robot pets is both essential and understudied. We observed that commonly used robot pets are poorly matched to end-user requirements, and that end users and developers of robot pets differ significantly in their perception of appropriate design. This may explain some of the contradictory outcome research and variance in results for robot pets, such as Paro. Objective: In response to the literature gap, we aimed to provide user-centered insights into the design of robot pets from key stakeholders to inform future robot development and the choice of robots for real-world implementation and research. We focused on understanding user requirements. Methods: We conducted a qualitative study with 65 participants from 5 care homes (26 care home residents, 29 staff members. and 10 family members). Care home residents formed groups of between 3 and 4 individuals and experienced free interactions with a range of 8 companion robots and toys, including Paro and more affordable alternatives. The robots provided had a range of esthetics, shell types, interactivity levels, and designs for comparison. Care staff and family members observed the interactions. All participants then engaged in focus groups within their stakeholder category to discuss preferences and user requirements in companion robot design. Both free interactions and focus groups were video and audio recorded, transcribed, and subjected to thematic analysis. Results: Care home residents, family members, and staff were open and accepting of the use of companion robot pets, with the majority suggesting that they would keep a device for themselves or the residents. The most preferred device was the Joy for All cat, followed by the Joy for All dog. In discussions, the preferred design features included familiar animal embodiment (domestic pet), soft fur, interactivity, big appealing eyes, simulated breathing, and movements. Unfamiliar devices were more often seen as toy-like and suitable for children, producing some negative responses. Conclusions: This work provides important and user-centered insights into future robot designs for care home residents by means of a comprehensive comparison with key stakeholders. This work strongly supports the use of familiar embodiment in future robot pet designs, with domestic cat and dog morphologies appearing most acceptable. The results have implications for future robot designs and the selection of robot pets for both research and real-world implementations.

Background: Robot pets may assist in the challenges of supporting an aging population with growing dementia prevalence. Prior work has focused on the impacts of the robot seal Paro on older adult well-being, but recent studies have suggested the good acceptability and implementation feasibility of more affordable devices (Joy for All [JfA] cats and dogs). Objective: We aimed to address the limited effectiveness research on JfA devices. Methods: We conducted an 8-month, stratified, cluster randomized controlled trial in 8 care homes in Cornwall, United Kingdom. Over 4 months, 4 care homes each received 2 JfA devices (1 cat and 1 dog; intervention group), and 4 homes received care as usual (control group). Psychometrics were collected before and after the intervention to compare the change from baseline to follow-up between the groups. In the final 4 months, all 8 care homes received devices, but only qualitative data were collected owing to COVID-19 and reduced capacity. The primary outcome was neuropsychiatric symptoms (Neuropsychiatric Inventory [NPI] Nursing Home version). Care provider burden was a secondary outcome (occupational disruptiveness NPI subscale), alongside the Challenging Behavior scale, the Holden communication scale, the Campaign to End Loneliness questionnaire, and medication use. Qualitative data were collected through care staff observation calendars and end-of-study interviews to understand use, experience, and impact. We also collected demographic data and assessed dementia severity. In total, 253 residents had robot interaction opportunities, and 83 were consented for direct data collection. Results: There was a significant difference in the total change from baseline to follow-up between the intervention and control groups for NPI (P<.001) and occupational disruptiveness (P=.03). Neuropsychiatric symptoms increased in the control group and decreased in the intervention group. No significant difference was seen for communication issues or challenging behavior. For NPI subdomains, there were significant differences from baseline to follow-up in delusions (P=.03), depression (P=.01), anxiety (P=.001), elation (P=.02), and apathy (P=.009), all of which decreased in the intervention group and increased slightly in the control group. The summative impact results suggested that most residents (46/54, 85%) who interacted with robots experienced a positive impact. Those who interacted had significantly higher dementia severity scores (P=.001). The qualitative results suggested good adoption, acceptability, and suitability for subjectively lonely individuals and lack of a novelty effect through sustained use, and demonstrated that the reasons for use were entertainment, anxiety, and agitation. Conclusions: Affordable robot pets hold potential for improving the well-being of care home residents and people with dementia, including reducing neuropsychiatric symptoms and occupational disruptiveness. This work suggests no novelty effect and contributes toward understanding robot pet suitability. Moreover, interactions were more common among residents with more moderate/severe dementia and those subjectively lonely. Trial Registration: ClinicalTrials.gov NCT04168463; https://www.clinicaltrials.gov/ct2/show/NCT04168463