Retha de la Harpe

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  • 1. Retha de la HarpeCape TownSouth Africa September 2009 Finland1

2. AGENDAData Stakeholders interacting with data Interaction in social and technical worlds Information Technology Structures Inscriptions Design and use of records as data objects Patient records in practice Healthcare case Conclusion September 2009 Finland 2 3. Community Empowerment ProjectThe collaborative creation of innovative ICT solutions to facilitate the improvement of the wellbeing of a community in tension Problem:Complex socio-economic factors threaten the wellbeing ofcommunities and often ad-hoc ICT solutions are proposedwithout addressing specific aspects that will influence theirsuccessful adoption.The following aspects are often not sufficiently considered: the complex nature of the problems and environment the need for the solution to be sustainable the factors specific to the local context the educational needs of training ICT practitioners andcitizens as the users of the ICT solutions; etc. September 2009 Finland 3 4. Community in Tension (CiT) Many communities suffer from problems that threaten the wellbeing of theircitizens resulting in a community with tension. These problems are complex social problems often associated with poverty, e.g.,crime; health, e.g. HIV/AIDS; substance abuse, etc. These problems interfere with, impede, or even outright prevent the developmentand empowerment of the communities and their citizens. Contributing factors are: the lack of economic development (unemployment, inflation, etc.) social inequality (insufficient social services, social issues such as drug abuse) insufficient education lack of appropriateness and use of technology. One of the consequences is that citizens become antagonists, victims orcitizens at risk contributing towards the tension between citizens; within families;within the community, etc.September 2009 Finland4 5. Community Citizens A citizen can be: neutral (is neither affected by the problems that cause the tension or contributing to theproblems) antagonist the citizen causing the tension, e.g., gangster, drug-addict, etc. victim the citizen that is caused harm as a result of the problems contributing to thetension, e.g., hurt by gangster activities, etc. citizen at risk the citizen that suffers from an illness (patient) or as a result of thetension, e.g., a family member of the victim or the antagonist Supporter the citizen who provides immediate support to the citizen at risk, e.g., familymember reconstructed/reformed citizen the citizen who used to be an antagonist, i.e., whohas caused harm to others and has reformed facilitator the citizen or thing (ICT can also be regarded as a facilitator) that acts asa change agent to bring about change community leader a citizen formally or informally accepted as a leader who act as aspokesperson for a group of citizens within the community, e.g., pastor, etc. Care giver / volunteer / community developer a citizen (within or outside thecommunity) who offers time and expertise to assist with the care, education,dissemination of information, etc. whose involvement contributes towards addressing theproblems contributing to the tensionSeptember 2009Finland5 6. Proposed solution Universities can play an important and leading role inaddressing problems that negatively impact thewellbeing of communitiesOften ICT solutions are developed based on perceivedanticipated needs without sufficiently considering thecontinuing actual-use-in-practice Is the solutionusable and useful for the user? Is it sustainable?This can be best achieved if a collaborative approachis used involving reseachers, students, citizens andother stakeholders from the onset where citizensbecome co-developers of the ICT solution.September 2009Finland 6 7. Approach to addressproblems All aspects, namely: Research Education The process of creating and deploying innovative ICT solutions The reason for the project:to address the needs of a community bybridging the gap between universities andcommunities. September 2009Finland 7 8. Focus of the Project ICT Solution to facilitate the:care of citizens (home-based care for health-related reasons, e.g., HIV/AIDSor counseling, e.g. against drug-abuse, gangsterism, etc.;dissemination of information, e.g., to inform citizens about the problems, their consequences and preventative mechanisms;education of citizens, e.g., train citizens specific skills, how to deal with a problem, etc. Care Inform EducateSocial innovationSeptember 2009Finland8 9. Counseling Modes 1. Face to face 2. Telephonically Person in need 3. ICT facilitatedIBM Compatible Person in need September 2009Finland 9 10. University Incubation Space September 2009 Finland 10 11. Community Development Space September 2009 Finland 11 12. Counseling, Technology & Community support spacesSome stats (without any funding): 20 week period 4 hours per week 4 000+ contacts 8 122 conversations 31 066 messagesSupported by:8 10 advisors managing 300 400 conversations in a 2 hour session September 2009 (10 at the same time) Finland 12 13. Sample Conversation 4:17 PM @mxit.co.za: i need supportme: how can i help 4:19 PM @mxit.co.za: im using tik and desperately need help coz I have a9 month old baby. 4:20 PM me: well we are here to help 4:21 PM @mxit.co.za: r u thereme: yeshow long hav u been using? 4:22 PM @mxit.co.za: 6 years nd im only 18 nwme: well are you willing to come and see someone in person? 4:23 PM @mxit.co.za: yes i am. whereme: we are based in Bridgetown 66 Tarentaal Rd 4:26 PM u free during the day? @mxit.co.za:yes i did nd thanx i'll come in next week. September 2009 Finland 13 14. Technology FacilitatedInteraction Space Components Humans: Counselors Community developers Professional counselors Moderator Runner Facility manager Developers Space: Caring/ counseling space A space that supports caring / counseling, etc. Technology space Sufficiently equipped space with appropriate infrastructure Technology: Servers (Application and Web) Network Applications Mobiles Connectivity Databases Telephones September 2009 Finland 14 15. Interaction in Social andTechnical Worlds Data stakeholders & roles (data producer, consumer and custodian) Data object a logical record that is constituted of one or more physical parts. A data object is a data representation of real-world object Health record is an integral part of the practical doing of healthcare - record at work complex collection of related forms, papers, documents and records embedded in the social, spatial context of a healthcare enterprise (Fitzgerald, 2000) Humans and artefacts are both social products as well as social makers in shaping and remaking each other (Widjaja & Balbo, 2006) Technology not used within a vacuum but always involves social actors where technology and humans shape each other (Kallinikos, 2002)September 2009Finland15 16. Information Technology Information technology is the product of human agency and will reflect the structures of the social system that designs and manages it as well as interpretations of its anticipated versus actual use Information systems can be regarded as a social system of information practice supported by information technologies (a material resource) (Weber, 2004) An emphasis on technology use can lead to a detachment of the IT artifact (Widjaja & Balbo, 2006) Focus more on the interplay between IT and organisations by reaching a deeper understanding of this interwoven relationship as to how IT shapes, enables and constrains organisations (Monteiro & Hanseth, 1996) September 2009 Finland 16 17. Real-world objects representedas data objectsDesigner Real-world ObjectPerceivedobservationRepresentation Perceptions ofInscribingRepresentation states: anticipated use perceived 1. Proper anticipated 2. Incomplete use 3. Ambiguous(Wand & Wang, 1996)Actual use UserData Object (Data Stakeholder) September 2009 Finland17 18. Patient records in practice Patient records (a multiplicity of things which forms a whole Data (previously captured, new data added) only sometimes or for some purpose) are large and complex networks (Berg & Bowker, 1997; Fitzpatrick,Patient 2000; Hanseth & Monteiro, 1997; Jensen, 2004) Observations, At a point of care a network is diagnosis, formed between the healthcare treatment details, professional(s), data object(s) etc. and patient this interaction results in data exchangePatient Record between the different stakeholders Representation Healthcare Professional September 2009Finland18 19. Design and use of patient records as data objects September 2009Finland19 20. Living Lab September 2009 Finland 20 21. DOSD, DOH 2001. Integrated Home/Community Based Care model options What isHome and Community BasedCare Home care is defined as the provision of comprehensive services, which include health and social services by formal and informal caregivers in the home in order to promote, restore and maintain a person's maximal level of comfort, function and health including care towards a dignified death. Home care services can be classified into preventive, promotive, therapeutic, rehabilitative, long- term maintenance and palliative care categories. Home/community based care and support is thecare/services that the consumer can access nearest tohome, which encourages participation by people,respond to the needs of people, encourages September 2009 community life and creates responsibilities.traditional Finland21 22. What is HCBC 2 HCBCs are providing a valuable service against manyobstacles.There is a low percentage of HCBCs that havecomputers, and that maintain financial records or evenlists of the individuals and families served.They need equipment, finances, trained and paid full-time, protocols for standards of care in order tobecome an even more effective force in the provisionof home communi