Rudi Harmse

Senior Lecturer: School of Information and Communication Technology

Institute for Information and Communication Technology

Advancement

Autistic self-mastery

The role of e-health systems in enhancing

quality of life

Outline

Introduction and basic premiseWhat is e-health? “Quality of life”The needOpportunities and threatsThe goalSummary and conclusion (the role of individual autistics?)

Introduction and basic premise

Healthcare systems are struggling to cope Insufficient services exist to fill the needsResearchers provide general answers onlyResearch should align with the experiences of autistic

individualsMembers of the autistic community should be involved in

informing the research agendaGeneral research results alone are not enough

What is e-health?

World health organisation:• “e-Health is the combined use of electronic communication

and information technology in the health sector.”Gunter Eysenbach (editor of the Journal of Medical Internet

Research):• “e-health is an emerging field in the intersection of medical

informatics, public health and business, referring to health services and information delivered or enhanced through the Internet and related technologies. In a broader sense, ....”

What is e-health? (Eysenbach)

In a broader sense, the term characterizes • not only a technical development, but also • a state-of-mind, a way of thinking, an attitude, and • a commitment for networked, global thinking, • to improve health care locally, regionally, and worldwide • by using information and communication technology.

What is e-health? (Eysenbach)

Essential e’s in e-health:• Efficiency• Enhancing quality of care• Evidence based• Empowerment of consumers and patients• Encouragement of new doctor-patient relationships• Education of doctors and consumers• Enabling information exchange• Extending scope of services• Ethics• Equity

“Quality of life”

“Quality of life”

Refers to factors that together express personal wellbeing8 quality of life domains can be recognised

• Emotional wellbeing• Interpersonal relationships• Material wellbeing• Personal development• Physical wellbeing• Self-determination• Social inclusion • Rights

The need

The need

Renty and Roeyers (Autism. 10. 2006) found that among individuals with an ASD:• The support characteristics were a greater determining

factor on quality of life than the disability characteristics themselves

The most important factors found were:• Perceived (as opposed to actual) informal support • Unmet formal support needs

Therefore both perceptions and specific needs of individuals should be addressed to improve quality of life.

The need (continued)

The most important unmet needs found were:• Accommodation• Daytime activities• ASD-specific information• Interpersonal relationships

Opportunities and threats

In this section the discussion will be guided by the work of Tantam (2006) “Opportunities and risks in e-therapy” Advances in Psychiatric treatment (12) and is divided into 4 categories:• Information• Interactivity• Openness• Disembodied presence

Information

OpportunityAvailability

Threat Information overloadMisinformationDisinformation

Interactivity

OpportunityClarifying adviceAlternative communicationLinks with peersAccess to services

ThreatUnreflective responsesConfidentiality breachWithdrawalAbuseVariable quality

Openness

OpportunityAvailabilityParticipation

ThreatPremature information

Disembodied presence

OpportunityAnonymity

ThreatWithdrawalDeception

The goal

E-health systems should be designed to operate with• A person-centered methodology• Providing the means to strengthen social support networks• Providing support tailored to specific needs• Preserving individual control during the process

Researchers and system developers should engage with the autistic community to ensure that such systems are relevant and appropriate

Conclusion: Role of individual autistics