This document summarizes a project called CAALYX that aims to develop wearable devices to monitor the vital signs and detect falls of elderly individuals. The system includes a roaming monitoring system to track individuals outdoors, a home monitoring system for video communication, and a central care service to receive alerts and dispatch emergency services if needed. The goals are to increase autonomy for the elderly and reduce burden on future generations by ensuring the elderly can safely live at home independently with remote monitoring and assistance.

1. Telehealthcare: Promises and Challenges Maged N. Kamel Boulos [email_address]

2. Agenda Europe Is Getting Grayer: The Imminent Demographic Changes and the Need to Reinvent Healthcare The Promises: What e-Health Can Do for the Elderly A Tale of Two Projects (incl. ) The Challenges (change management, technology, evaluation, policy/legal/privacy, and financial/business issues) A Proposed Consumer-centric Approach (Coughlin and Pope, 2008) Resources (incl. link to download this PPT)

3. Europe Is Getting Grayer By 2051, 40% of the EU’s population will be over 65 years old! e-Aged Care (including Gerontological Informatics and Geriatric Informatics), Social Care Informatics, and Community Informatics are the “new” buzzwords. Percentage of older people in EU - forecast (Source: EUROSTAT) See latest Eurostat forecasts at http://epp.eurostat.ec.europa.eu/cache/ITY_OFFPUB/KS-SF-08-072/EN/KS-SF-08-072-EN.PDF

4. The Imminent Demographic Changes and the Need to Reinvent Healthcare The health sector currently employs 9.3% of Europe’s total workforce (in 2002, this was 17.5 million persons in the prospective EU of 25 Member States). But as Europe ’ s elderly dependency ratios continue to increase over the coming years, w e will come to a situation where we have more elderly people, and less working age people, including healthcare professionals and carers , to serve them. e- Health tools and services are expected to play a crucial role in addressing many of the needs that will arise as a result of these demographic changes.

5. The Imminent Demographic Changes and the Need to Reinvent Healthcare Criticism of the above argument (‘ a situation where we have more elderly people, and less working age people to serve them ’): “ Although labour force participation rates are projected to decline (...) in most countries, due mainly to changes in their age distributions, labour force-to-population ratios will actually increase in most countries. This is because low fertility will (also) cause lower ‘youth dependency’ that is more than enough to offset the skewing of adults toward the older ages at which labour force participation is lower. The increase in labour-force-to-population ratios will be further magnified by increases in age-specific rates of female labour force participation associated with fertility declines.” (from: http://www.growthcommission.org/storage/cgdev/documents/gcwp032web.pdf - published in 2008 by The Word Bank )

6. The Imminent Demographic Changes and the Need to Reinvent Healthcare – Cont’d The e-Health industry has the potential to be the third largest industry in the European health sector, and by 2010 it could account for 5% of the total health budget. But it is also very likely that e-Health will eventually affect the majority of transactions in the health systems, and that health professionals will radically change their current ways of working. This will render the differentiation between e-Health and healthcare in general irrelevant, or at least blur the distinction between both terms.

7. Criticism: e-Health Is Not a Panacea! Technology is commonly also human resource-intensive, requiring different/additional skills (e.g., technical people to set up and maintain the services), as well as healthcare professionals to administer telehealthcare services and manage the large amounts of data, details, alerts, etc. that such services continually generate. Are the services scalable when it comes to human resources? Do we have proper contingency plans (e.g., in case of Internet failure)?

8. A 2004 European Commission report features a very useful SWOT analysis with respect to increasing e-Health applications in Europe, including health and social care information services for the aged and their carers, and telecare and independent living services. This multi-axial SWOT analysis can help shape a health and social care informatics education and research agenda for Europe during the coming years and decades. ftp://ftp.jrc.es/pub/EURdoc/eur21377en.pdf

9. EU Elderly Are Very Positive About e-Health and Its Potentials One of the strengths highlighted in the aforementioned SWOT analysis is the general open mindedness of the older population towards e-Health. And by 2030/2050, even more elderly will be computer savvy (these will be today’s youth and middle aged who are already extensively using computers and the Internet in their daily lives).

10. Source: eHealth in the Context of a European Ageing Society - A Prospective Study ftp://ftp.jrc.es/pub/EURdoc/eur21377en.pdf

11. But Let ’ s Not Forget the Physical and Cognitive Disabilities in the Elderly The percentage of disabled people within the EU is set to rise to 17% by 2030 (Source: EUROSTAT, Europa - based on numbers of registered disabled people, according to clinically based diagnostic studies; numbers would be much higher if all sorts of functional difficulties are considered) . The elderly include a larger proportion of disabled people than any other age group. Studies show that, paradoxically, it is the disabled who stand to gain the most from informatics services where properly presented, whilst at the same time having the hardest time in accessing these services when poorly designed.

12. What e-Health Can Do for the Elderly Augmenting their sense of connectedness with society / reducing their social isolation (especially the disabled among them). Empowering them and making them more in control of their health conditions. Enabling them to live more independently , and to lead a more fulfilling and enjoyable life . H as the potential of improving clinical outcomes in chronic care, and also quality of life . IDEATel (Informatics for Diabetes Education And Telemedicine) @ dmi.columbia.edu >

13. What e-Health Can Do for the Elderly – Cont’d Information services / telecare and independent living services can: S upport and educate patients and their carers ; promote , provide for, and improve elderly self-care / self-help , health behaviour, and lifestyle . S upport healthcare professionals in the monitoring and management of aged patients with chronic disease . Increase elderly access to chronic care; lower the burden and cost of chronic care. And much more… Smart Medical Advisor, Center For Future Health @ Rochester.edu >

14. Health Informatics Education Is Needed As the role of informatics becomes increasingly important in a health sector serving a growing ageing population, it is vital to grow and continue developing the EU’s e-Health skills base (capacity building). There is a need here to clearly differentiate between: Laypersons/patients’ informatics skills (services shouldn’t be very demanding / the minimal basic set of skills should be enough) , ‘ Expert end user’, e.g., doctor and nurse, health informatics skills (informatics competencies as a precondition for licensing / informatics competencies in medical and nursing schools curricula) , and The professional skills of professional health informaticists!

15. Required skills by user category and application area - Source: eHealth in the Context of a European Ageing Society - A Prospective Study ftp://ftp.jrc.es/pub/EURdoc/eur21377en.pdf

16. Required skills by user category and application area (Cont ’ d) - Source: eHealth in the Context of a European Ageing Society - A Prospective Study ftp://ftp.jrc.es/pub/EURdoc/eur21377en.pdf

17. “ By end 2009, the European Commission, in collaboration with Member States, should undertake activities to set a baseline for a standardised European qualification for e-Health services in clinical and administrative settings . ” — Commission of the European Communities: e-Health - making healthcare better for European citizens: An action plan for a European e-Health Area (2004) http://europa.eu.int/information_society/doc/qualif/health/COM_2004_0356_F_EN_ACTE.pdf

18. e-Health Research and Development Are Needed Research is needed to assess and address the implications of European ageing on healthcare systems . Better e-Health tools and services need to be designed and developed for Europe 2020 and beyond (reduce access barriers and increase s/n ratio, e.g., using novel Semantic Web and knowledge management methods and technologies, software agents, etc.) . Of utmost importance will be human-computer interaction research into the special cognitive and physical (visual, hearing, motor) accessibility needs and aspects of older people’s interaction with electronic interfaces providing them with health and social care information and services.

19. e-Health Research and Development Are Needed – Cont’d Evaluating e-Health in aged and chronic care ; providing robust proof of the usefulness of e-Health applications; measuring elderly satisfaction with technology, and any improvement in health outcomes and quality of life, including its psychological dimension, that might follow e-Health services and interventions. Addressing the challenges of a heterogeneous Europe (culturally, linguistically, digital divides, etc.), and heterogeneous health organizations and systems (for example, while the NHS in this country may be seen by many as being a single organization, it is in fact a federation of hundreds of Trusts, with different and inconsistent policies and practices on new technology development, application and purchase). Research into the legal and related aspects of e-Health , e.g., privacy, confidentiality and trust.

20. Case Studies: Two European Projects The ‘Radio doctor’, a futuristic telemedicine illustration from 1924 > M2DM (FP5 - 2000 ) CAALYX (FP6 - 2007 ) “ What has been will be again, what has been done will be done again; there is nothing ( really ) new under the sun .” (Ecclesiastes 1:9)

22. M2DM A three- year (Jan 2000 - Dec 2002) project that was funded by the European Commission (€ 2.2 million), and which I worked on as a researcher at City University in London.

23. The goal was to integrate different ICT devices to enable an efficient and easy-to-use access to telemedicine services by patients and providers. M2DM is able to manage the knowledge necessary for patient care delivery.

24. M2DM – Cont ’ d The project has been evaluated in a clinical study involving about 100 patients in five European clinical centres. Six evaluation dimensions were considered: Clinical QOL and User Satisfaction Usability Technical Economic Organizational Our published results show an improvement in clinical outcomes (e.g., HbA1c) in patients using M2DM , and a good degree of user satisfaction. See: Blaze R, Arcelloni M, Bensa G, Blankenfeld H, Brugues E, Carson E, Cobelli C, Cramp D, D'Annunzio G, De Cata P, De Leiva A, Deutsch T, Fratino P, Gazzaruso C, Garcia A, Gergely T, Gomez E, Harvey F, Ferrari P, Hernando E, Boulos MN , et al. Design, methods, and evaluation directions of a multi-access service for the management of diabetes mellitus patients . Diabetes Technology & Therapeutics . 2003;5(4): 621-9.

25. http://caalyx.eu/ June 8, 2009 CAALYX - IST-2005-045215

26. Consortium - I CAALYX is a two-year project funded by the European Commission under the Sixth Framework Programme (FP6 STREP). Strategic Objective : eInclusion Call 6 The project has a total of eight (8) participants : Telefónica Investigación y Desarrollo-TID, Spain Instituto de Engenharia de Sistemas e Computadores do Porto-INESCP, Portugal Corscience GmbH & Co KG, Germany COOSS Marche Onlus-COOSS, Italy Synkronix Ltd.-SYNK, United Kingdom University of Plymouth-UPLY, United Kingdom University of Limerick-ULIM, Ireland Hospital Sant Antoni Abat, Spain June 8, 2009 CAALYX - IST-2005-045215

27. Consortium – II (6 countries) June 8, 2009 CAALYX - IST-2005-045215 ULIM UPLY SYNK CORS INESCP TID ABAT COOSS

28. Mission Statement Older people’s autonomy and self-confidence can be greatly increased by wearing a light device that can measure vital signs, detect falls, and automatically raise an alert to their care centre in case of an emergency. June 8, 2009 CAALYX - IST-2005-045215 Mission >>>

29. Objectives - I CAALYX’s main objective is to develop a wearable light device able to measure specific vital signs of the older person, to detect falls and to communicate automatically in real time with his/her caregiver in case of an emergency, wherever the older person happens to be, at home or outside. Specifically, CAALYX’ objectives are: To identify which vital signs and patterns are more relevant in determining probable critical states of an older person’s health. June 8, 2009 CAALYX - IST-2005-045215

30. Objectives - II To allow for the secure monitoring of individuals organised into groups managed by a caretaker who will decide whether to promote raised events to the emergency service (112). To create social tele-assistance services that can be easily operated by users. June 8, 2009 CAALYX - IST-2005-045215

31. Project description - I CAALYX’ system considers three main areas of contribution: The Roaming Monitoring System , The Home Monitoring System , and The Central Care Service and Monitoring System . June 8, 2009 CAALYX - IST-2005-045215

32. Components of CAALYX June 8, 2009 CAALYX - IST-2005-045215

33. Components of CAALYX June 8, 2009 CAALYX - IST-2005-045215

34. Project Description - II The Roaming Monitoring System intends to monitor unobtrusively the older person when carrying out his/her daily activities in an independent way, both in his home and outdoors. Several vital signs besides falls will be measured and automatically communicated together with his/her geographic position to the Central Care Service in case of emergency, so that a rescue unit can be dispatched in a timely manner. June 8, 2009 CAALYX - 045215 GPS Bracelet with sensors Data Logger

36. Components of CAALYX June 8, 2009 CAALYX - IST-2005-045215

37. Project Description - III The Home Monitoring System intends to provide a video communication channel for monitoring and service-providing. This communication link can be used to provide on-demand services like grocery shopping, cleaning, housekeeping or gardening, and periodic consultation with the doctor or personal caretaker. June 8, 2009 CAALYX - IST-2005-045215 Media Centre PC

39. Components of CAALYX June 8, 2009 CAALYX - IST-2005-045215

40. Project Description - IV The Central Care Service and Monitoring System will receive alerts from subscribed older persons. The caretaker will evaluate whether received alerts need to be promoted to the emergency service (112), in which case the geographic position and data about the likely type of emergency (fall, stroke, etc.) will be disclosed to the emergency service, so that a suitably equipped emergency team may be dispatched in a timely manner to the patient’s location. Besides this service, video-communication with the home environment will be held to attend the older person’s demands. Other possible services include reminders of pills, visits, activities, etc. June 8, 2009 CAALYX - IST-2005-045215

43. Project Description - V End users’ needs will be fully considered in CAALYX by studying how older persons live. The study will include interviews with people interacting with them: family, neighbours, friends, caretakers, social services, representatives of National Health Services, etc. Besides, a small sample of older persons will be involved in a real test of the system at the end of the project. A report will assess system performance and strengths, contrasting them against identified success criteria. June 8, 2009 CAALYX - IST-2005-045215

44. Video Station CAALYX Research Prototype (Confidential and cannot be shared using a public URL)

45. Expected Impact - I The aging European society is placing an added burden on future generations, as the ‘elderly-to-working-age-people’ ratio is set to steadily increase in the future. Nowadays, quality of life and fitness allows for most older persons to have an active life well into their eighties. Furthermore, many older persons prefer to live in their own house and choose their own lifestyle. This project will have a clear impact in increasing older persons’ autonomy by ensuring that they do not need to leave their preferred environment in order to be properly taken care of and monitored. June 8, 2009 CAALYX - IST-2005-045215

46. Expected Impact - II The impact on society will revolve around the following issues: Individualisation - Today traditionally denser and firm social networks like family and friends have become scarcer. Single households are becoming a mainstream way of living in urban centres. Older people living alone who are unable to leave their homes and care for themselves after having accidents or rapidly deteriorating health conditions can go unnoticed for long times. June 8, 2009 CAALYX - IST-2005-045215

47. Expected Impact - III The impact on society will revolve around the following issues (Cont’d): Population migration – By reducing the need for the older person to relocate (e.g., to live in an elder care institution or with family members at another location), the current elder living environment is not depleted of its people. This is especially important in rural areas with a preponderance of older persons, whose desertification (of people) has a clear ecological impact. June 8, 2009 CAALYX - IST-2005-045215

48. The impact on society will revolve around the following issues (Cont’d): Manpower – The demographic trend makes it difficult to foresee how Europe will find enough people to take care of its older population. Elder care will compete with other economic activities for resources. Expected Impact - IV June 8, 2009 CAALYX - IST-2005-045215 Europe-wide impact – The migration of north European retirees to areas with a milder weather is a well known phenomenon. The care network will be distance independent, with several entities collaborating in care delivery.

49. Case Study - I Peter is 65 and lives alone in a sheltered accommodation managed by social services. Peter has always lived alone and values his independence . He has two sons (Terry and John) who live nearby and visit him occasionally. Peter’s friend, Barry, lives next door and has taken the responsibility for looking after him. Peter suffers from memory loss but uses a system of notes and reminders to keep track of his activities. June 8, 2009 CAALYX - IST-2005-045215

50. Case Study - II Peter’s day starts at 7:30 when he uses the bathroom and gets ready for the day. He fits his vital signs sensors, fall sensor and mobile phone when getting dressed. His TV automatically comes on at 8:00 with a prompt for him to take his medication. Peter sends a reply back (through his TV) once he has taken his medication. June 8, 2009 CAALYX - IST-2005-045215

51. Case Study - III He goes for a walk at 10:00. If Peter falls during his walk, his fall sensor contacts his medical centre and opens a voice channel allowing medical staff to talk to him, if this is possible. The fall sensor is equipped with a Geographic Positioning System device to allow precisely finding his location. June 8, 2009 CAALYX - IST-2005-045215

52. Case Study - IV The centre also sends a text message to Barry alerting him about the location of Peter. Barry believes he can get to Peter quicker as he lives next door and knows Peter’s routine. Falls are registered by the system and a weekly log is sent to Peter’s General Practitioner who monitors his progress and evaluates his medication. If Peter falls or if his vital sign sensors are triggered while at home , a similar alert procedure is adopted except that the system knows he in his home so that geographic positioning is not required. June 8, 2009 CAALYX - IST-2005-045215 Accelerometer Fall Sensor

53. Case Study - V Terry monitors his dad’s progress via his TV. Terry’s children contact Peter on weekly basis. They play a game on their TV (where is my suitcase) together and use a video conferencing to help each other finding the missing items. The game is fun and designed to improve memory and cognitive functions in both adults and children. On Friday nights, Peter plays bingo (from his TV) with his other friends while they chat about what they have done during the week. This is conducted through an audio/video system, which connects several sheltered accommodations together. June 8, 2009 CAALYX - IST-2005-045215

54. CAALYX in Second Life® http://healthcybermap.org/CAALYXinSL/

55. The Challenges A plethora of telehealth technologies and projects appeared over the past two decades [1,2], with very slow market diffusion (innovation gap). [1] T he Senior Project Consortium (FP7). Environmental Scanning Report - senior Deliverable D1.1. June 2008 ( http://www.seniorproject.eu/ ) [2] Coughlin JF, Pope J. Innovations in health, wellness, and aging-in-place. IEEE Engineering in Medicine and Biology Magazine . 2008;27(4):47-52

56. The Challenges Transition Issues (Change Management) Technological Issues Evaluation Issues Policy, Legal and Privacy-related Issues Financial/Business Model Issues

57. Transition Issues Redefinition of roles with introduction of telehealthcare Organizational change management: new processes, uncertainty and need for continuous adaptation in face of continually fast-changing technologies and the associated increase in patients’ expectations Training (staff, patients): many patients are still not ready/literate enough to be ‘expert patients’!

58. Transition Issues Eventually, in 25-30 year time, a “new” generation of older people will emerge that will be enough ‘computer and technology literate’ to better cope with telehealthcare technology and assume a more active and extensive role in managing their own health (expert patients). Hopefully, this will matched and facilitated by the availability of more usable and transparent telehealthcare technologies within the same timeframe.

59. Transition Issues Building services around existing off-the-shelf equipment (= minimize development and training costs/time), undertaking an open, modular/‘plug-and-play’ approach, and the proper adoption of suitable true standards (e.g., for interoperability ) should also help easing the transition into telehealthcare services and their integration with one another and into the healthcare ecosystem. Focus should be on true standards, not on enforced ad-hoc systems solution standardization within the organization.

60. However, standards can also be a challenge in a continually fast-changing technology ecosystem Standards often change solely for competitive reasons, not because of technical inadequacy. (Remember: The big industrial players are always sitting on committees overseeing standards.) As Norman Worth, an IEEE Life Member, explains, ‘standards are meant to help subsystems and components to be replaced or added without replacing the entire system. But unfortunately, the standards now seem to have a lifetime not much longer than the components’. (Worth N: Fighting Obsolescence (Forum: Our Readers Write). IEEE Spectrum 2008, 45(6-INT):10. http://www.spectrum.ieee.org/jun08/6249 )

61. A Complex Ecosystem: No Single Player Can Do It All!

62. Continua Health Alliance http://www.continuaalliance.org/ The NHS in England is member of Continua. ‘ Plug-and-play’

63. Technological Issues Need for/availability of suitable infrastructure (e.g., broadband in older people’s homes, which might not be available in some rural areas). Complexity = difficult to debug, maintain and integrate. Reliability/robustness and contingency plans in case of failure.

64. Technological Issues Electronic Health Record integration—easier said than done (HL7 and other standards). Data security issues (CIA): confidentiality, integrity, availability—the latter includes adequate system redundancy to prevent service disruptions due to power outages, hardware failures, physical disasters. (Data security issues also involve some non-technology ingredients, e.g., policies and human factors.)

65. Technological Issues Examples of technological problems encountered in the current CAALYX research prototype include battery life (Nokia N95), finding a GPS fix in difficult environments (e.g., in a concrete building/shopping mall), Bluetooth pairing issues (sensors communicating with the N95), wearable component packaging, wiring, weight and form factor, service scalability, etc.

66. Evaluation Challenges Establishing clinical safety and reliability (and potential problems) in various complex scenarios can be tricky. Telehealthcare evaluation/establishing the evidence can also be a serious challenge in such a continually fast-changing environment. This very dynamic nature of telehealthcare technologies limits the long-term value of any evaluation study results .

67. Evaluation Challenges Reliable metrics are needed, e.g., for cost/human resource impact, clinical safety/reliability, usability, intrusiveness/obtrusiveness, and user acceptance. Fensli R, Pedersen PE, Gundersen T, Hejlesen O. Sensor acceptance model - measuring patient acceptance of wearable sensors . Methods Inf Med . 2008;47(1):89-95 Hensel BK, Demiris G, Courtney KL. Defining obtrusiveness in home telehealth technologies: a conceptual framework . J Am Med Inform Assoc . 2006 Jul-Aug;13(4):428-31 Kaufman DR, Patel VL, Hilliman C, Morin PC, Pevzner J, Weinstock RS, Goland R, Shea S, Starren J. Usability in the real world: assessing medical information technologies in patients' homes . Journal of Biomedical Informatics . 2003;36(1-2): 45-60

68. Policy, Legal and Privacy-related Issues Policies and laws are in many occasions lagging behind eHealth technology. Liability issues in case of errors and failures: technical (e.g., design, service availability, transmission errors) and clinical errors (must have proper contingency planning and insurance cover in place). Need for proper audit trailing . Secure transmission protocols and channels and endpoint authentication.

69. Policy, Legal and Privacy-related Issues Consumer privacy (e.g., in CAALYX we only communicate clinical and GPS data to remote servers in case of emergency, so that people do not feel as if their every move is being watched; this also saves bandwidth and is far more power-efficient than a system that has to continuously transmit data). Courtney KL. Privacy and senior willingness to adopt smart home information technology in residential care facilities . Methods Inf Med . 2008;47(1):76-81

70. Financial/Business Model Issues Heterogeneous health and social care systems across Europe ( See: Rosanna Tarricone and Agis D. Tsouros (Editors). Home care in Europe. The solid facts . WHO Regional Office for Europe - Copenhagen Denmark, 2008 http://www.euro.who.int/Document/E91884.pdf ) Distribution of cost/who pays. Cost (incl. Cost of change)/benefit and justification/business case. Cost of ‘staying connected’ and of round-the-clock monitoring (which also involves humans/personnel ready to receive emergency data and properly act upon it anytime 24/7).

71. Financial/Business Model Issues Infrastructure and equipment cost (for example, the Nokia N95 currently used in CAALYX costs >£250 per set). Equipment reuse where possible (as with RemoteNurse equipment http://www.hometelehealthltd.co.uk/ ). Use of freely available/royalty-free technologies whenever possible to minimize costs. A Subscription-based Service model has been proposed for CAALYX (after it becomes commercially/market-ready).

72. Financial/Business Model Issues The Subscription-based Service will cost £200-£300 p.c.m. ( to cover essential costs and achieve a very thin profit margin). This price is still not affordable by the majority of older people/pensioners in the UK (who live on <£10-15K p.a.), and could still increase if solutions for those with chronic health conditions are also considered (CAALYX is currently targeting only healthy older people).

73. A Proposed Consumer-centric Approach (Coughlin and Pope, 2008) According to coughlin and Pope (2008), in order to properly translate eHealth research/inventions into high-penetration innovations in people’s daily lives, intelligent home health services should be envisioned as a complete technology architecture that fully leverages the convergence of consumer electronics, kitchen and bathroom appliances or fixtures, entertainment, computing, and specific applications in health and wellness to address the needs of the elderly .

74. A Proposed Consumer-centric Approach (Coughlin and Pope, 2008) Rather than today’s device and disease-driven service model that relies on government reimbursement or private health insurance alone, a variety of services should be offered to consumers to address a wide range of needs as well as wants. These consumer demands include health, wellness, safety, security, entertainment, education, convenience, connectivity, personalized advice, assistance with routine home maintenance, etc.

75. A Proposed Consumer-centric Approach (Coughlin and Pope, 2008)

76. A Proposed Consumer-centric Approach (Coughlin and Pope, 2008) Only through such a clever, integrated and value-added approach can eHealth establish high market penetration and success, as other younger technologies have managed to do in a much shorter time (e.g., mobile phones and game consoles).

77. Resources Download related papers, reports, other presentations, plus a copy of this PPT: http://www.caalyx.eu/eHealth/TH/ Thank you!