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Grounding eHealth
The need for a Human centered and Value-driven approach
Lisette van Gemert-Pijnen
Center eHealth Research & Disease Management
Guadeloupe, February 2011
eTelemed
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University of Twente – Le Gosier
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Center for eHealth Research & Disease ManagementInstitute for Social Sciences and Technology
to create and share knowledge about social andbehavioural aspects of technology in health care
to translate knowledge into useful guidelines andconcepts for (re)designing and implementingtechnology in healthcare
to intensify cooperation with international researchcentres and healthcare institutes
to strengthen the relationship between research,policy and practice
to contribute to the solution of global healthproblems, like ageing and chronic care, via amultidisciplinary approach (social sciences &technology)
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Presentation outline
Why do we need to innovate Healthcare & eHealth?
Problems with the uptake of eHealth technologies
Low Adherence to eHealth technologies
Limited Value of eHealth technologies
A new approach to ground eHealth in a digital society
How it works, and Benefits
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Why do we need to innovate Healthcare?
↑ elderly people ↑ healthcare associated infections (MRSA, Swine Flu etc) ↑ chronic diseases; comorbidity ↓ healthcare professionals ↓ budget
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Digital SocietyNature of demand is changing: e-Patients want Health 2.0 solutionsfor sharing information
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Technology can help,but what interventions do or do not work? And WHY
Dementia
eCoaching
eMonitoring
eDecisionAid
eAwareness
eLogistics
eLearning
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Problems with the uptake of eHealth technologies
Slow diffusion
Low acceptance
Lack of adherence
Nicol Nijland,J van Gemert-Pijnen, 2011
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systematic review diabetes care;1994-2009(90 studies included) , barriers for the uptake of eHealth
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eHealth Technologies, low impact
Insufficient capacities
Lack of training, education staff
No integration offline-online
Lack of project management
case manager, nurse, GP, specialist, patient ????
Unclear insight in benefits (cost/benefits for whom?)
Bias in population (no complications)
Bias in publication, no report of drop outs
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Technology, not human centered
Usability problems
Ceiling effect (ill-management; task-related eHealth
systems)
Lack of push factors (triggers for motivation, like fun,
entertaining, incentives, rewards)
Template medicine, Lack of tailor-made advice to
support well-being
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Research, limited power
Lack of longitudinal studies, no focus on usage over time
Lack of process evaluations about real-time usage
Medical research, focus on classic trials, no evidence about
HOW and WHY technology works in practice
Technology is a black box in research > no evidence
Underestimation of impact eHealth interventions
RCTs
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eHealth, No impact?
Small studies suggest that
telemonitoring may improve heart-
failure outcomes, but its effect in a
large trial has not been established.
Among patients recently hospitalized
for heart failure, telemonitoring did not
improve outcomes. The results
indicate the importance of a thorough,
independent evaluation of disease-
management strategies before their
adoption.
Patients and caregivers never used the technologies as expected
These publications demand for a new approach to ground eHealth
interventions (to increase adherence) and
to measure the overall impact of eHealth in practice (clinical, behavioral,
care coordination)
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Lack of Adherence, a global problem
Focus in research:drop outs, and usage over time;reasons for attrition; drivers forpersistence
Eysenbach, 2005, the law of attrition, J Med Internet Res 7(1):1
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Adherence to a web-based coach DM II, self-careUsage, Users, Drop-outs?
Different tools appear on demand:e.g. healthy living test, sport selectionguide, activity scale, nutrition guide,weight manager, diet guide, mobilityexercises
MonitoringMotivation (eContact)Mentoring
•Education•Instruction
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Usage of the web-based Diabetes coach, during 2 years
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Mea
nn
um
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of
hit
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Personal data Online monitoring E-mail contact Online educationCalendar Personal l ifestyle coach Print feature
I just forget and if mydiabetes nurse wouldprovide some more help orpay some more attentionto it, it might result in more
interest.
It should be moreinteractive; that youwould get a signaland reply.. That youwould get a slightlymore stable rhythm...
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Who are the hardcore users? (reviews & evaluations usage web-based systems for self-care)
Those that might feel they have much to gain..
Conscientiousness? (Halko&Kientz, 2010)
positive attitude in advance to use the application
more healthy than they think they are
eager to realize goals
higher use of all apps a system provides
proactive, asking for support via eContact
demand for “smart” technology;
automatic integration of data to gain a complete picture of theircondition
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Discontinued users (web-based systems )
Technology frustrates
usability problems; people get lost in the system
They have a high demand for push factors
triggers; feedback; incentives
No obligations , free use, free choice, free of charge
Technology does not motivate
no fit into daily live
they think their condition is under control (ceiling effect)
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eHealth gives us the best means of providing accessiblehealth care to the poorest and most vulnerable (TUTU)
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Vulnerable patients Dementia
Safety support, care coordination (observation)
GPS track and trace
ADL-sensor technology (daily activities)
Support for self-care, well-being (inter-active)
Touch screen & Video contact
Chitchatters (contact apps “ songs from the Past”)
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Handyman technologies for dementia , limited value
GPS systems (Talk me Home-tools) frightened
patients and caused weird situation (following tool,
disregarding traffic)
Sensors that observe daily life activities as eating,
sleeping, opening the fridge provide data difficult to
interpret
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24
Patients & carers have different needs
Patients want narrative
Technology, stories, songs, newsfrom the past
Patientswant aview onthe worldoutside
caregivers and family carers wanttechnology for safety control, careplanning (interest)
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Review current models, frameworks
Review current frameworks, models (1999-2009)
Perspective & Foundation
Focus (development, evaluation, implementation)
Strategies for involvement of users/stakeholders
Strategies for creating a fit between technology and its users
J.van Gemert-Pijnen, N Nijland 2011
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eHealth frameworks not advanced enough to developtechnologies that make sense
Unclear theoretical grounds, no clear visions about how
technology can improve healthcare
No empirical evidence for the benefits of using thesemodels; Lab-models
Focus on evaluation OR development OR implementation
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Need for holistic models to achieve technologies that are human centered, fit forcontext, and that have value for all stakeholders
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Framework to ground eHealth interventions(2011)
Thesis Nijland, 2011 30
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Principles eHealth framework
• Holistic approach to understand the overall impact of eHealth
interventions on healthcare
• Multidisciplinary project management
• Participation of stakeholders throughout development process
• Implementation no afterthought; interwoven with development
• Continuous Evaluation, no fixed-end
• Advanced methods to study process and outcomes
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eHealthwiki.org
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Chronic Care Platform eCoaching
Teledermatology (wound care; diabetic foot)
Infection control (www.eursafety.eu)
Dementia & Safety and Daily activity support
Mental Health via online Therapy
How the framework works… several studies
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02/05/2011 34
Teledermatology (wound care)
How can a needs- and requirement assessment be used as a blueprint for the design
of a TD system for wound monitoring?
34
Problemidentification
Actormapping
Selectionactors
Values
Functionalrequirements
Designrequirements
Technicalfeasibility
Infrastructurewound care
Businesslogic
Assess
Effects
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Identification of problems
•Inadequate diagnosis andmonitoring•Lack of coordination•Miscommunication•Unclear financial structure•Lack of practical guidelines
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Stakeholders’ perspectives on the values of eHealth technology
36
Selectionactors
Values
Functionalrequirements
• is there any need for a new system?
• what are the benefits, given the observed
problems?
• what are the critical design factors?
• what are the conditions for implementation?
• SPACE for INNOVATION
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02/05/2011 37
RESULTS: Design requirements
37
Designrequirements
Technicalfeasibility
Dermatologist:“Technology shall helpwith coordination of
work
Manager home care: “Apatient file (EPD)
especially for woundcare.”
Specialized wound carenurse: "It would be
excellent to use a tool toconsult the GP”
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Health-technology-development is more than designing, engineering a good “thing” orstand alone device, it is about creating an infrastructure for communication and theorganization of care
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Persuasion via social media..
Persuasive technologies to
increase adherence, SOME totrigger, to remind, to educate
“Healthy Mouth MeansHealthy Life, and
Healthy sex ”
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IMPACT ON ADHERENCE VIA PERSUASIVE TECHNOLOGY
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Co-creation of an Antibiotic Stewardship Program
Co-design (hospital staff, primary care, general public)-awareness, education, cooperation, outbreak management
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Business Modelling
Critical factors for adherence,risks, and costs
Establishing the business case
Implementation of an Antibiotic Stewardship Dashboard
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Methods To ground eHealth
To know Why and How technology can make a difference- or not- in
healthcare:
longitudinal process studies (focus on drop-outs & persistence )
observations of real-time usage (user-profiles)
evaluation methods to know how technology evolves over time
experiments to put persuasion into technology (tech-profiles)
Robust evaluation methods to measure effects; a bird’s eye
view on the impact of technology on healthcare (human, legal,
ethical challenges, cost-benefits)
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Benefits of the Framework MRSA-NET.NL
CO-CREATION OF A WEB-BASED COMMUNICATION SYSTEM ; 2008
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bought !!!! (HAGO)
Visitors !!!
I think people know toolittle about MRSA,which leads to muchuncertainty. The websitecan help in here.”
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Benefits of the eHealth framework
Technology no stand alone device, but a catalyst for
innovations, new way of thinking how to support healthcare via
technology in a Digital Society
Better adherence to safe behavior via co-creation
Better implementation via stakeholders’ involvement /investment
Staff, patients can manage IT; participation=motivation
eHealthwiki, instruments to judge the true value of eHealth
interventions (overall impact )
eHealth-education-roadmap (students & caregivers, developers)
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Thanks..
Contact: dr. J (Lisette) van Gemert-Pijnen
www.ehealthresearchcenter.nl
Leaflets CeHRes (registration desk)
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Problemen
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Expert driven eHealth models( review Van Gemert-Pijnen, Nijland et al)
Design models: ISO 13047 “Human-centered design processes forinteractive systems
No HOT-Fit
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Benefits of the eHealth framework
Technology no tool or end in it self, but a catalyst for innovation
Investments through stakeholder-engagement (commitment,
trust, power)
Participatory development (staff, patients that can manage IT)
Human touch, High Impact via user-engagement
eHealthwiki, instruments to judge the true value of eHealth
interventions (overall impact )
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Benefits, human centered and value driven framework
Technology no tool or end in it self, but a catalyst for
innovation,
Development= creating an infrastructure for service
management
Human touch, High Impact via engagement
eHealthwiki, instruments to judge the true value of eHealth
interventions (total impact )
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Why Technology has limited value..
Supply-driven technology disregards needs and demands (frustration)
Medical-driven technologies have a focus on ill-management apps, not on
well-being and lives to live (ceiling effects; drop outs)
Absence of adequate business models hinder up-scaling (unclear who
benefits)
Shortage of fully qualified eHealth professionals (no fit between offline-online
care;)
Lack of HOT-fit (shadow-organisation)
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Persuasive technology and personalities (Halko&Kientz, 2010)
More or less persuadable (Big Five Personalities)
Conscientiousness successful for tech-persuasion (realising goals)
Extraversions hard to persuade via tech
Openness more likely to favour competitive or authoritative tech
Agreeableness not very successful to persuade via tech
Neuroticism no cooperation, enjoyment of negative reinforcement
Technology fits with personalities
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Need for participatory development
“ success in achieving change is enhanced by the active
participation of members from the target user groups […] toensure that planners have a structure in place to engage systemend-users effectively from the start.” (Kukafka, 2003)
“There is a need for evaluation research at each stage ofdevelopment and implementation, from conception to the routine
operational use ” (Kaufman, 2006)
The ability of eHealth to empower consumers, support dynamic
information exchanges among organizations, and “flatten”organizational hierarchies might result in a need for neworganizational strategies, business models, service delivery
models, and management mechanisms.” (Ganesh,2004)
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Co-creation via participation of users, stakeholders
- Human-centered
- Usability theories (smart, simple)
- Persuasive technology (motivation, empathy)
- Health behavioral theories (self-control, adherence)
- Value-driven
- Holistic model (fit between human, technology, organization)
- Business modelling for value creation
- Participation of key-stakeholders during development process
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Integration of 4 levels; holistic approach eHealth
K.H. Dansky et al, 2006
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eHealth “a way of thinking about supporting health bytechnology”
“eHealth is not only a technical development, but also a
state-of-mind, a way of thinking, an attitude, and acommitment for networked, global thinking, to improvehealthcare locally, regionally, and worldwide by using
information and communication technology.” (Eysenbach,2001)
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IMPACT ON ADHERENCE VIA PERSUASIVE TECHNOLOGY