Retha de la Harpe

September 2009 Finland 1

Retha de la HarpeCape TownSouth Africa

1


AGENDA

Data 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


Community Empowerment Project

The 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 of communities and often ad-hoc ICT solutions are proposed without addressing specific aspects that will influence their successful 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 and

citizens as the users of the ICT solutions; etc.


Community in Tension (CiT)

• Many communities suffer from problems that threaten the wellbeing of their citizens 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 development and 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 or citizens at risk contributing towards the tension between citizens; within families; within the community, etc.


Community CitizensA citizen can be:• neutral (is neither affected by the problems that cause the tension or contributing to the

problems)• 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 the

tension, e.g., hurt by gangster activities, etc.• citizen at risk – the citizen that suffers from an illness (patient) or as a result of the

tension, 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., family

member• reconstructed/reformed citizen – the citizen who used to be an antagonist, i.e., who

has caused harm to others and has reformed• facilitator – the citizen or “thing” (ICT can also be regarded as a facilitator) that acts as

a change agent to bring about change• community leader – a citizen formally or informally accepted as a leader who act as a

spokesperson for a group of citizens within the community, e.g., pastor, etc.• Care giver / volunteer / community developer – a citizen (within or outside the

community) who offers time and expertise to assist with the care, education, dissemination of information, etc. whose involvement contributes towards addressing the problems contributing to the tension


Proposed solution

• Universities can play an important and leading role in addressing problems that negatively impact the wellbeing of communities

• Often ICT solutions are developed based on perceived anticipated needs without sufficiently considering the continuing actual-use-in-practice – Is the solution usable and useful for the user? Is it sustainable?

• This can be best achieved if a collaborative approachis used involving reseachers, students, citizens and other stakeholders from the onset where citizens become co-developers of the ICT solution.


Approach to address problems

• 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 by bridging the gap between universities and communities.


Focus of the Project

ICT Solution to facilitate the:– care of citizens

• (home-based care for health-related reasons, e.g., HIV/AIDS or

• 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 Educate

Social innovation


Counseling Modes

IBM Compatible

Person in need

1. Face to face

2. Telephonically

3. ICT facilitated

Person in need


University Incubation Space


Community Development Space


Counseling, Technology & Community support spaces

Some stats – (without any funding): 20 week period – 4 hours per week

• 4 000+ contacts

• 8 122 conversations

• 31 066 messages

Supported by:

8 – 10 advisors managing 300 – 400 conversations in a 2 hour session (10 at the same time)


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 a 9 month old baby.

4:20 PM me: well we are here to help4:21 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.


Technology Facilitated Interaction 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


Interaction in Social and Technical 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)


Information Technology

• Information technology is the product of human agencyand 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)


Representation states:1. Proper2. Incomplete3. Ambiguous

(Wand & Wang, 1996)

Representation

Real-world Object

Data ObjectUser (Data Stakeholder)

Designer

Perceived observation

Inscribing perceived anticipated use

Perceptions ofanticipated use

Real-world objects represented as data objects

Actual use


Patient records in practice

• Patient records (a multiplicity of things which forms a whole only sometimes or for some purpose) are large and complex networks (Berg & Bowker, 1997; Fitzpatrick, 2000; Hanseth & Monteiro, 1997; Jensen, 2004)

• At a point of care a network is formed between the healthcare professional(s), data object(s) and patient – this interaction results in data exchange between the different stakeholders

Patient

Healthcare Professional

Patient Record

Data (previously captured, new data added)

Observations, diagnosis, treatment details, etc.

Representation


Design and use of patient records as data objects


Living Lab


• 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 the care/services that the consumer can access nearest to home, which encourages participation by people, respond to the needs of people, encourages traditional community life and creates responsibilities.

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What isHome and Community Based

Care


“HCBCs are providing a valuable service against many obstacles.There is a low percentage of HCBCs that have computers, and that maintain financial records or even lists of the individuals and families served.They need equipment, finances, trained and paid full-time, protocols for standards of care in order to become an even more effective force in the provision of home community-based care.There needs to be closer links between the work they do and policy-makers.”

What is HCBC – 2


Kyamandi Township, Stellenbosch


Kyamandi Township, Stellenbosch


Sister, Care Giver and Patient


Store in Kyamandi


Care coordinator with care forms


Bridgetown, Athlone

Day hospital

Community clinic

Residents

Community clinic

Needs within HCBC – 3


Needs within HCBC – 6

Bridgetown, Athlone

Day hospital

Systems devl

Community clinic

Residents

Community clinic

Software organization

Systems devl

Software organization

Management

Dept of Social Development

Management

Dept of Health

Do they need better services?

Do they need better ICT tools?

Do they know how to design such tools?


Network to support home-based care


Interactions


Care service in the community


Home-based Care System


Civil society is missing from the triple helix innovation chain!→ 4-party collaboration for open innovation chainIn healthcare ICT, you need 5-party collaboration:Civil society, care providers, industry, academia, government

Community,citizens

Services

HealthcareUnivers ity Software org

Service

Education

Systems

devl Research

Needs

Government – national, provincial, municipal

5-party collaboration vs.triple helix in innovation chain


• Start from analyzing the “landscape” – organizations, political structures, broad level stakeholders• Identify the activities and services, involve actual ground level stakeholders – service providers and consumers, management, key partners, key support• Help stakeholders analyze their current situation, needs and “future target state” – individually and together, through collaborative analysis• Draft social and technical solutions, create hands-on protos/mock-ups, co-develop with stakeholders• Continue co-designing with stakeholders during product testing, organizational implementation and improvement

What is socio-technical IS development


Expected outcomes• (Portfolio of) software products for HCBC• Improved service models of ICT-supported HCBC• SMMEs distributing the products and making more• Professionals in SMMEs who are skilled “socio-techies”• Socio-tech IS development methodology tried in practice• Undergrad teaching material on socio-tech ISD methods• Dream: Undergrad textbook available in Global Text• Dream: Socio-tech education for all undergrad software and systems students in 3 South-African universities

The Socio-Tech SA projectfunded by SAFIPA – 3


Data stakeholders interacting with patient data

• Thank you• Questions?

Travel

Retha de la Harpe