"Participatory development for human-centered and value-driven eHealth" as presented at Medicine 2.0 in Maastricht

1. Participatory development for
Human centered and Value-driven eHealth
J (Lisette) van Gemert-Pijnen
Center for eHealth Research & Disease Management
Maastricht, 29 November 2010

2. Center for eHealth Research & Disease Management
Institute for Social Sciences and Technology
 to create and share knowledge about social and
behavioural aspects of technology in health care
 to translate knowledge into useful technology
concepts for (re)designing and implementing
technology in healthcare
 to intensify cooperation with international
research centres and healthcare institutes
 to strengthen the relationship between research,
policy and practice
 to contribute to the solution of social-economic
problems, like ageing and chronic care, via
technology

3. Trends in Healthcare (1)
Ageing societies demand for innovative solutions
 ↑ elderly people
 ↑ healthcare associated infections
 ↑ chronic diseases; comorbidity
 ↓ healthcare professionals
 ↓ budget

4. Trends in Healthcare (2)
Nature of demand is changing: e-Citizens want Health 2.0 solutions
for self-control

5. Technology can help, but what works?
eDecision
Aids
eAwareness Dementia
eMonitoring
eCoacing
eLearning
eLogistics

6. Adherence to technology
Focus in research: usage over time
reasons for attrition; drivers for
persistence
Eysenbach, 2005, the law of attrition, J Med Internet Res 7(1):1

7. Barriers for adherence; why IT does not work
systematic review diabetes care;1994-2009 (47/90 self-care)
management No coordination offline-online
Lack of training, education staff
Lack of project management (case manager, nurse, Gp, specialist,
patient)
Bias in population; bias in publication, no report of drop outs
Unclear insight in benefits (cost/benefits for whom?)
technology Usability problems
One-way-Feedback (professionals contact patient)
Ceiling effect (ill-management; task-related coaches)
Lack of push factors (triggers for motivation, like fun, entertaining,
incentives, rewards)
Lack of tailoring, template medicine
research No longitudinal studies, no process results of usage
Control-groups do no match with Intervention groups (weak RCTs)
Unclear definitions of self-care
Technology is a black box in research, no focus on capacities of
technology as a medium for communication

8. Adherence to a web-based coach DM II;
evaluation usage/discontinued usage (2 years)
Different tools appear on demand:
e.g. healthy living test, sport selection
guide, activity scale, nutrition guide,
weight manager, diet guide, mobility
exercises
Monitoring
Motivation (eContact)
Mentoring
•Education
•Instruction

9. Usage and non-usage of the eDiabetes coach
8
Mean number of hits
I just forget and if my
7 diabetes nurse would
provide some more help or
6
 Usage over time, study period 2 years pay some more attention
 methods to it, it might result in more
5 interest.
4  Survey Enrollee characteristics
3  Interviews barriers to enrollment
 Log files/content analysis; Actual use of theshould be more
It web application
2 interactive; that you
 Usability-tests ; real-time observation actual usage a signal and
would get
1
 Interviews : motivations for use & barriers reply.. That you would
to use
get a slightly more
0  Follow-up emails Barriers to long-term usestable rhythm...
07/07
08/07
09/07
10/07
11/07
12/07
01/08
02/08
03/08
04/08
05/08
06/08
07/08
08/08
09/08
10/08
11/08
12/08
01/09
02/09
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Personal data Online monitoring E-mail contact Online education
Calendar Personal lifestyle coach Print feature

10. eCoaching, who persist? (review & diabetes coach)
Those that might feel they have much to gain..
Conscientiousness to gain their goals… (Halko&Kientz, 2010)
 positive attitude in advance to use the application
 “under-estimaters”
 high medication users
 eager to realize goals
 higher use of all modules; in particular monitoring+email
 proactive, asking for support via eContact
 reflection on usage (demand for “smart” technology; integration of
monitoring+eContact+personal data)
 SES influences access, not persistence

11. Discontinued users (lifestyle coach)
 Technology not human-centered
 usability problems; people get lost
 lack of push factors (triggers; feedback; incentives; social media)
 Technology has no added value
 no fit into daily live
 ceiling effects (condition under control)
 wrong group (no critical condition to participants)
 No support (patients&profs)
 lack of pressure (no obligations for usage)
 lack of incentives, rewards
 no integration with offline medicine
 limited training staff
 no clear marketing or diffusion strategy

12. Adherence to Technology for dementia (vulnerable patients)
(nursing homes; home care)
 Safety support (passive)
 GPS track and trace
 Support for self-care, well-being (inter-active)
 Touch screen & Video contact
 Chitchatters (contact games “the Past”)
 Care coordination support (passive)
 IST Vivago Watch (measures sleep/wake rhythm)
 ADL-sensor technology (observing activities)

13. Supply driven technology (passive tech), limited value
 GPS systems (Talk me Home) frighten patients and cause
weird situations (following tool, disregarding traffic)
 Sensor technology (monitoring activities like eating,
sleeping) enhanced feelings of safety however a lot of
usability problems occurred

14. Patients & carers differ in needs and interests
caregivers and family carers want
technology for safety control,
structures for living (interest)
Patients
want a
view on
the world
outside,
social
contacts
Narrative Technology, stories,
songs, news from the past to
“remember”
14

15. Why IT has limited value..
 Supply-driven technology disregards needs and demands (frustration)
 Expert-driven-development models disregard real-life situations and
complexity in healthcare (high tech, low impact)
 Medical-driven approach results in ill-management apps, rational-decision-
making, no focus on well-being and lives to live (ceiling effects)
 No hot-triggers for usage (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; shadow-organisation)
 Systematic reviews & studies center eHealth research

16. Need for new approaches to achieve technologies that are human centered, fit
for context, and that make sense for all stakeholders

17. Roadmap for participatory development
Thesis Nijland, 2010 17

18. Participation of stakeholders for value driven technologies
Selection
actors
Values
Functional
requirements
• is there any need for a new system?
• what is the added value?
• what are the critical design issues?
• what are the conditions for implementation?
• What are the roles, tasks related to technology ?
What business models provide added value?
18

19. Health-technology-development is more than designing, engineering a good “thing” or
tool, it is creating an infrastructure for knowledge dissemination, communication and
the organization of care

20. Persuasive Design to increase adherence
Praise
Rewards
Reminders
Suggestion
Similarity
Liking
Social role
20

21. Co-design via social media
To develop user-generated content, to know how people talk, think,
what matters...
Co-design of a communication platform
– Antibiotic Stewardship Toolkit for hospital staff, primary
care, general public
– education, collaboration
– awareness & information general public…
– Outbreak management (multi resistant bacteria)

22. EURSAFETY HEALTH-NET CROSS-BORDER INFECTION CONTROL
AHM van Limburg MSc BEng, MGR Hendrix PhD MD, J van Gemert-Pijnen PhD
 Business Modelling
 co-creation with stakeholders
 continuous, reflective process
 evaluation & implementation
interwoven with development, no
afterthought
 canvas models; cost/benefits

23. eHealth Research: 2.0 Topics for innovation
 Innovative research methods for participatory health
 monitoring (non)usage (attrition; persistence; user profiles)
 international classification system to describe eH-interventions
 persuasive design to increase adherence (human centered
design)
 co-creation via business modelling (value-driven)
 wiki, social media as 2.0 research methods (user generated
content)
 multi-level (HOT-FIT) and multidisciplinary focus (social
sciences, medical sciences, engineering)

25. Thanks..
Contact: dr. J (Lisette) van Gemert-Pijnen
J.vanGemert-Pijnen@utwente.nl
www.ehealthresearchcenter.nl
www.medicine20congress.com