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A Wiki for Collaborative Development in eHealth
1. Panel members: Lisette van Gemert-Pijnen, PhD, University of Twente Nicol Nijland, PhD, University of Twente Lex van Velsen, PhD, University of Twente Bart Brandenburg, MD, Medicinfo Hans Ossebaard, University of Twente, RIVM
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21. The “Who” Characteristics n (%) Education ( n = 43) Low 5 (12) Medium 22 (51) High 16 (37) Health status ( n = 43) Excellent 0 (0) Very good 6 (14) Good 25 (58) Fair 12 (28) Poor 0 (0) Diabetes duration ( n = 42) 0-2 year 12 (29) 3-6 years 16 (38) >7 years 14 (33) Diabetes treatment ( n = 43) No treatment 2 (5) Diet 4 (9) Diet & tablets 37 (86) Diet, tablets & insulin 0 (0) Diet & insulin 0 (0)
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Notas del editor
Introduction HANS Introductive ( 3 min): -HANS: welkomstwoord (welcome panel on../beginnen met voorstellen) Gegevens: -totale sessie tijd: 45 min -vorm: parallelsessie (room: Plenary Hall) stamtafels: opzet is van belang verwachte opkomst: 100 mensen? -discussieleider: Hans 3 min Hans welkom en slide panel opzet 3 min lisette (background) 10 min nicol, lex, lisette, hans: show it 25 min disciussion, see 5 slides 5 min what next : allen
HANS This panel discussion is aimed to get more insight in the need for a web 2.0 based virtual network for information sharing, and to know whether such an idea is valuable for practice AND what future plans we have to optimize the wiki.
Lisette Who are we? Hans, Lex, Nicol and I we work at the university of Twente, in the Netherlands, and we belong to the this center for eHealth research. The aim of the center is to improve the impact of eHealth via guidelines and concepts for (re)designing, our research is multidisciplinary and rooted in engineering and social sciences. Besides we want to strengthen the relationship between research, policy and practice, by translating evidence into practical tools for development of Ehts
LIsette To increase the uptake of ehealth, we developed a holistic framework to create technologies that are Human-centered, fit-for-context, and that make sense to ALL stakeholders A Holistic view involves a focus on creating a fit between technology, the stakeholders and the context of the usage of technology. For example we have to know how patients live their lives and what stakeholders views are on technology to improve healthcare and how technology can fit with that ; So stakeholders like decision makers, caregivers, policymakers, researchers , engineers, and payers participate in the development process of eHts The framework is based on empirical resercah and review of current eHelath models; It is flexible and dynamic, it can be used for development as well as for the evaluation off the effects of eHts. It is grounded in human centered design principles to match technology with its users, And business modeling to guide the implementaTION OF eHts It has 5 components, each component has accompanied methods and tools; available via an eHealthwiki . stakeholder involvement is important to develop sense making technologies that have value in practice. It can be seen as time consuming process, to achieve shared understanding and commitment. Via computer assisted techniques that supports stakeholder involvement (to support dialogue, or collaborative mapping or to support value creation) the time question can be solved
lisette Today we demonstrate how this framework works, we will carry out a contextual inquiry with you, as stakeholders, to discuss the added value of the framework and the eHealathwiki for practice, policy and research.
Lisette Why I new framework? In science and media the impact and evidence of health technologies are discussed; \\ A lot of papers, especially in the field of medicine, tells us that impact is low and that evidence lacks. What problems do we face with eHealth? In fact it is said that the problems are wicked and as such hard to solve In short, ehealth is not sexy , IT is cold and has no soul . Technology frustrates, IT is not romantic, and people do not want to have a love affair with it;, except Chinese people; they see technology not as a THING but as an expression of the soul What;’s The reason : technologies are developed by medical experts or engineers, without any ideas about How people live their lives, what their drivers, rituals and habits are, Bum’s rush projects. ehealth projects come and go, no one is responsible for the quality, there is no clear funding system , and a lack of adequate business models for investment in ehelath . There are no fully qualified ehealth professionals; a lot of technology is not used or misused, resulting in errors, frustrations and waste of time and money Evaluations are not competent due to a RCT driven focus , so in fact we do not have real insight in the impact of eHts at the moment. And evidence is not communicated well, so there is no collective intelligence about what works in practice, what makes sense So , it is maybe a wicked problem, bit there is no 1 solution to improve the uptake and impact, the strategy is to address all factors together; and to look at the big picture . This requires an holistic approach and more robust evaluation methods. That’s why we developed a virtual network for knowledge exchange , the ehealthwiki toolkit
The aim of this panel, Today, is to discuss the values of such a virtual network . stakeholder involvement is important to develop sense making technologies that have value in practice. It can be seen as time consuming process, to achieve shared understanding and commitment. Via computer assisted techniques that supports stakeholder involvement (to support dialogue, or collaborative mapping or to support value creation) the time question can be solved
NICOL & LEX Nicol: values wiki : -better integration via particpatory development -advanced methods (nicol logfiles) -persuasive technology design (lex personas) How this ehealthwiki works Question driven approach, each question leads to the guideline and instruments for answering the question The menu structure gives information about the visons about eHelath, the regulations , the funding systems, and invite people to give feedback etc
Does it already exist? Yes, but these wiki’s are information wikis, like medical encyclopedia
Stakeholder analysis (Hans/Bart) What stakeholders are involved in this session? Health care professionals? Researchers? Developers? Decision-makers? Payers? (healthcare insurers)
Wiki’s are here to stay, but….
Note: pas op dat het niet gaat om wiki iha! Epublic: flu, outbreaks Social impact factor, review related wikipedia entry (authors of journals); for example eHelathwikipedia; persuasive technology
Wikis give rise to the concept of darwikinism : openess, rapidity: pages evolve revolutionairy; openess may invite vandalism Moderating, monitoring, adminstration very time consuming Restoration/roll back function Protecting: re4ad only Controlling who can post Blocking problematic users Specific interest groups Meta-information: who are the authors? , discouraging the feeling of ownership? Authorial identification is not in line with a wiki,
NICOL “ One-stop shopping” for academic partner finding.; as academics we publish, but we provide services and advice to industrial partners and other academic partners (soort medicinfo in ehealth) Lex: how to increase adherence? Laten zien hoe wiki werkt Uploaden persona door lex Lisette: how to involve stakeholders Maarten: bus model canvas, value creation uploaden Nicol: how to measure iusage vb logfiles (protocol logfiles of diabplaatje in wiki uploaden nog) Hans: how to start with ehealth
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Nicol Ceiling effect: In most eHealth projects, like the Diabetescoach project, convenience samples are used. Besides, in the DiabetesCoach project patients were selected based on the severity of their health condition (no patients with complex health conditions were included[n1] in the project). As a result, mostly the already motivated (convenience sample) and “well-regulated” patients or “healthy” care consumers (selection bias) are the ones who agree to participate. For most of these patients a ceiling effect occurred: “I am doing well, so I do not (longer) need the technology for self-care”.