Safe Home Living
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Slides for my talk accompanying our UbiComp 2013 paper 'Making Family Care Work: Dependency, Privacy and Remote Home Monitoring Telecare Systems'. The paper and talk focused on a field-trial of a remote monitoring system designed to allow family members to remotely 'check-in' on their older relatives who lived on their own. The paper picks apart many of the trust and privacy issues of the system, and unravels the problems the system poses for older peoples independence. Full paper can be accessed here: http://dl.acm.org/citation.cfm?id=2493432.2493469&coll=DL&dl=GUIDE&CFID=380590099&CFTOKEN=64685270
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Safe Home Living
- 1. Making Family Care Work: Dependence, Privacy and Remote Home Monitoring Telecare Systems John Vines1, Stephen Lindsay2, Gary W. Pritchard1, Mabel Lie1, David Greathead1, Patrick Olivier1 and Katie Brittain1 1 Culture 2 Fit Lab, Newcastle University Lab, Swansea University
- 2. ageing in place Living within one’s own community—with some level of independence—rather than entering residential care for as long as possible in later life. (Fange and Ivanoff)
- 3. technology & ageing in place Trip and fall monitoring (Nehmer et al.) Medication reminders (McGee-Lennon et al.) Remote monitoring for: care teams (Richie et al.) volunteer carers (Consolvo et al.) concerned relatives (Rowan et al.)
- 4. our ‘local’ context Move away from ‘formal’ care provision to ‘informal’ care provided by volunteers (mostly families and friends) Less technology and equipment provided by the state – more emphasis on private purchases and consumer systems – likely to be purchased by relatives
- 5. Safe Home Living system [SHeL] ‘SHel’ Safe Home Living
- 6. ‘Shel’ kit Wireless PIR sensors; GPRS hub
- 9. study design Installed in homes of 21 participants (17 completed trial) aged 66 to 91 years. 11 family caregivers participated as ‘monitorers’ Interviews before installation, during installation and at end of trial Focus on the experience of the system from the older adults perspective with a view to how it impacts upon existing care relationships Thematic analysis [1] of transcript data
- 10. findings motivations for using SHel balancing privacy, control and risk vulnerability and independence presence and absence
- 11. findings: motivations for using SHeL “With her being on her own you just don‟t know what could happen. I worry about the fact that if you haven‟t rang her that day or none of us have rang her that day.” (Betty’s daughter) “She might stop phoning me asking what I‟ve been up to each evening” (Robert, pre-int.)
- 12. findings: privacy, control & risk “I occasionally do stay overnight [at a friend‟s] [...] it just crops up and I‟ll say right I‟m off and I certainly wouldn‟t ring [daughter] to let her know that I was going ... it‟s none of her business.” (Robert, install-int.) “was very, very helpful to think that my daughter who‟s a good hour‟s drive away could tell which room I was in and if I was in a room too long – she would ring up anyway to say„what are you doing in there so long‟ if it was the bathroom say” (Sarah, exit-int.)
- 13. findings: vulnerability & independence “I think I possibly do feel a bit safer when it‟s in because you know if anything happened in that month [it was installed], I would be found.” (Betty, exit-int.) “it [was] just one step down from making you dependent on somebody […] it takes away your perception of independence” (Reg, exit-int.)
- 14. findings: presence & absence “Tell you the truth I forget it‟s there.” (Carole, exit- int.) “I think it‟s quite reassuring to know that it‟s working [...] I think it should be visible at some point [...] when I walked in the kitchen and walked past the fridge I could see out of the corner of my eye this thing [the main hub] go like that [flashing] I wasn‟t aware of that in any of the other rooms but when I went in the kitchen it reassured me that it was still working” (Janet, exit-int.)
- 15. design recommendations #1 Present activity data to those being monitored
- 16. design recommendations #1 Present activity data to those being monitored #2 Control over how activity is presented to others
- 17. design recommendations #1 Present activity data to those being monitored #2 Control over how activity is presented to others #3 Feedback on the frequency of being monitored
- 18. design recommendations #1 Present activity data to those being monitored #2 Control over how activity is presented to others #3 Feedback on the frequency of being monitored #4 Reassuring caregivers through explicit interaction
- 19. Thank you! Any questions? john.vines@ncl.ac.uk di.ncl.ac.uk This research was performed as part of TSB funded project ‘SHel’ and partly supported by the TSB ALIP 3 and 4 project ‘SALT’
Editor's Notes
- Explain that this is shell!
- The system is comprised of five wireless, small low-power passive infrared (PIR) sensors that connect to a central hub using the ZigBee protocol.The hub is a larger mains powered unit, which transmits data to a server via GPRS.
- // Interesting as when this is eventually released it will be one of the first examples of a consumer, off the shelf telecare system// Also interesting as although this will be installed in the homes of older people, the system is targeted towards the younger relatives of an older person, for whom it aims to provide reassurance that their older relatives are managing to live independently within their own homes. // So it is a ‘less than emergency system’ – for who are concerned about their older relatives but not to the extent that warrants automated alerts about potential emergency situations.
- The sensors are located at specific points of activity in the home such as food preparation, bathroom usage, relaxation, sleeping, and entering and leaving the house. Typically these correlate to rooms (such as the bedroom, bathroom, kitchen, living room and main entrance).The sensors also measure light levels and temperature so the caregiver can tell if their relative is in a dark or cold room. This information is sent to a secure server – and then family members have to explicitly log into a secure web portal to view the activity logged by the system and the data recorded by the light and temperature sensors. This portal could be accessed via any standard web browser on a personal computer or mobile device. 1. there was a need to offset concerns about the semi-public presentation of such data in another person’s home (as noted in [7]). 2. a web-portal would provide greater access to busy caregivers who were in full-time employment, offering opportunities to access data while away from their home.
- /// Vulnerability of older relatives.///Shel as supporting new practices of checking in on family members around busy lifestyles/// Less clear what benefits were to older participants/// Focus on benefits of not being phoned so much by family members
- /// privacy concerns about the control of data sharing. That many of the older participants were still very independent appeared to be in tension with the notion of being monitored. Indeed, roberexpalined that…./// existing routines of family members checking up have a level of control where you can disclose information only if you want to/// in the paper we talk in detail about how the bathroom was seen as one area of the home that was particularly sensitive in terms of monitoring. /// However, some participants were more pragmatic about being monitored in potentially sensitive locations. Sarah had recent experiences…… in this case potentially invasive monitoring was deemed worth the risk based upon prior negative experiences.This backs up prior work that suggests people with medical conditions or with experiences of illness may be more willing to share potentially private information with others.
- /// Heightened vulnerabilities, mostly through the stories and experiences of others./// Shel supported these concerns participants had./// For others it made them feel more vulnerable and was seen as an affront to their independence. Reg’s example/// Although system was designed to support independence, it actually made some participant feel highly dependent on others.
- /// Many of the older participants initially raised concerns about how intrusive the device would physically be in the home. Worries about its aesthetics, noises it may make, power consumption./// Often after use these concerns disappeared and great value was seen in the systems absense.//// Some actually stated a preference for it to be more present than it currently is. Worried about it not working as it disappeared into the background//// A lack of information about whether they were actually being checked up on.
- /// Building on the work of reciprocal systems (Caine and colleagues), we agree that there needs to be greater control for those being monitored about what information is presented to others./// Focus is not just on the type of data { Video; motion; pressure } but on its granularity as well. For example, only showing the number of times a sensor was activated and not timings, or perhaps altering the timeframes that a caregiver can view information with./// Avoiding complex control however – for example, the PIR sensors themselves could be adapted to have simply dials or switches to manipulate variables.
- /// Building on the work of reciprocal systems (Caine and colleagues), we agree that there needs to be greater control for those being monitored about what information is presented to others./// Focus is not just on the type of data { Video; motion; pressure } but on its granularity as well. For example, only showing the number of times a sensor was activated and not timings, or perhaps altering the timeframes that a caregiver can view information with./// Avoiding complex control however – for example, the PIR sensors themselves could be adapted to have simply dials or switches to manipulate variables.
- /// Present feedback on how many times a caregiver has ‘check up on you’./// Designed into the representations of activity in ones own home.
- /// It was clear that there will always be certain periods of time where monitoring is inappropriate. Living independently is as much about going out and enjoying time with friends as it is growing old in your own home, yet it seemed on occasions that the SHeL system prohibited this social activity./// It seems to us that the whole of telecare is based on passive monitioring of people and not providing opportunities for them to actively send messages of reassurance. So, in the paper, we talk about ways in which older relatives could send ‘I am out and ok’ or ‘I am having dinner’ messages to concerenedrelatves without necessarily disclosing where they are or who they are with.