Telematics and the ethics of medical diagnosis complet
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Telematics and The Ethics of Medical Diagnosis
Coord: sef. lucr. dr. Elena Toader, dr. D. BoldureanuAuthor: stud. Andreea SufaruFaculty of Medical Bioengineering UMF Iasi, april 2009.
“Rien n'est plus puissant qu'une idée dont l'heure est venue !” Victor Hugo
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Motivation – Trends in HealthCare and ICT*
The 2 principal actors in the health system are physicians and patients.
Each of them are affected by:
• increase in amount of health related information
• ageing of population
Empowered patients – prevent/inform: new lifestyles and work styles
Fewer young:growing demand, reduced supply
Super-specialization, fragmented care: co-operative care continuum
Complexity in diagnostics & therapy:knowledge explosion – efficacy gap
Nowadays a lot of countries are confronted with huge cha(lle)nges in health area.
As a solution there comes telematics.
*ICT=information and telecommunication technologies
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Health Telematics - definition
Areas of applications: Tele-education Tele-medicine telediagnostic Telematics for health research Telematics for health services
management
*ICT=information and telecommunication technologies
The applications of ICT across the whole range of functions that affect the healthcare system, from the doctor to the hospital manager, via nurses, data processing specialists, social security administrators and - of course - the patients.
Telematics = Telemetry + Informatics
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Applications Telematics
Tele-learning Tele-consultation Tele-diagnosis Tele-gastroscopy Tele-laparoscopy Tele-surgery Tele-imaging Tele-radiology
Tele-nuclear medicine Tele-fluoroscopy Tele-ultrasound Tele-pathology Tele-ECG, Tele-EKG Tele-audio
transmissions Tele-cardiology Tele-monitoring
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Remote counselling
The most important goal of healthcare services is focused on Diagnosis.
PatientGeneralist Physicians
Specialist Physician
Teleconsultations+Telediagnosis+Tele-expertise+Teleassistance
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Telediagnosis: Anytime, Anywhere,
Any format
Patient - Assures safety- Reduces waiting times, more comfort- Less costs for travel (remote sites)- Less absenteeism at work, school- Better control of its own health, time,
expenses- More choices in health service providers- “people love to see themselves on tv”- Less accidents on roads- More ecological- Less redundancy- Prevention & Explanations
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Telediagnosis - Care team
- Decreases the need for emergency services- Greater ease in medical decision-making- Less travelling – more efficiency, More time spent
with patients- Can be present everywhere, more patients
worldwide - > more experience - >Higher productivity- more money
- Clear evidences of patients’ files –full history in database
- Advisors/health councellors- Face to face services will be appreciated differently
– higher prices- Network communities will promote the best doctors More protected from infection disease
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Ethical European Perspective
“How can we improve the quality, cost and accessibility of healthcare?”
“Health, priority number 1 in Europe” – generous motto The main ethical dilemmas that arise in research must be
addressed to ensure compliance. In the last years has been an increase in the importance of
ethics issues to ICT research and technological developments.
The decisions of EP* and EC* concerning FP7* states that research activities supported by the FP7 should respect fundamental ethical principles, including those reflected in the Charter of Fundamental Rights of the EU and take into account opinions of EGE*
*EP=European Parliament ; *EC=European Commision*FP7= seventh framework program
*EGE=European Group on Ethics in Science and New Technologies
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Ethics checklist – FP7Informed Consent
Does the proposal involve children, patients or persons not able to give consent, adult healthy volunteers, Human Genetic Material, Human biological samples, Human data collection?
Research on Human Embryos/FoetalDoes the proposal involve Human Embryos, Human Foetal Tissue/Cells, Human Embryonic Stem Cells?
PrivacyDoes the proposal involve processing of genetic information or personal data (e.g. health, sexual lifestyle, ethnicity, political opinion, religious or philosophical conviction)? Does the proposal involve tracking the location or observation of people?
Research on animals Does the proposal involve research on animals? Are those animals transgenic small laboratory animals, transgenic farm animals, cloning farm animals, non-human primates?
Research Involving Developing Countries Use of local resources (genetic, animal, plant, etc.)? Benefit to local community (capacity building i.e. access to healthcare, education, etc. )
Dual Use Research having potential military/terrorist application
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Legal & Ethical European Dimension
A major modernisation intended to benefit patients and professionals should not end up being forced forward in a way which instead puts them at risk.
At present, the visions of advanced technologies applied in healthcare are being projected to rapid enforced implementation without the needed foundations of: Empirical evidence Beta-piloting or replication studies Appreciation of the magnitude of change for health
professionals and entire society Ethical and legal dimensions
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Ethical Issues
• Psychological effects - Big Brother syndrome
• Using and distributing information• Confidentiality: all or nothing/ no
discriminations• Informed consent• Surveillance and possible loss of
privacy and autonomy• Should not lead to increased isolation• Balance between risk and safety
Policy may have to be retrofitted to the current technology landscape and its future possibilities
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DATA PROTECTION AND PRIVACY
Eight principles of GCP* - Data must be:● Fairly and lawfully processed● Processed for limited purposes● Adequate, relevant and not excessive ● Accurate ● Not kept longer than necessary● Processed in accordance with the data
subject's rights ● Secure● Not transferred to countries without
adequate protection*GCP=good clinical practice
What are the issues at stake in Data Protection and Privacy? How to deal with Data Protection and Privacy?
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Value Conflicts ???
Effectiveness vs ConfidentialityThe need to know and share patient personal health data, in order to provide
good quality of care, creates a situation of shared secrecy which may compromise confidentiality.
Privacy vs the Collective GoodPrivacy may be traded for certain collective goods (research, administration,
planning, prevention...) that benefit the community or population at large.Quality Assurance vs Professional Autonomy
Some professionals fear that quality assurance standards (protocols, clinical guidelines, clinical pathways, …) may restrict or diminish professional autonomy.
Efficiency vs BeneficenceWhile beneficence indicates giving the best possible care for every patient, this
may be very expensive and not feasible. In the context of limited resources, to give a patient expensive care could deprive another patient of much needed basic treatment, a second best treatment may be the most appropriate.
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Questions… How are patient’s rights of confidentiality of
their personal data ensured and protected? How to ensure security of the data and
restrict its availability to only those for whom it is intended and who are authorised to view it?
How to prevent unauthorised interception and/ or disclosure?
Who is responsible in case of abuse of patient’s data ?
What are the credentials and competence of the remote physician? What standard of care is being offered to the patient?
Who regulates and controls the credentials of the authors, reliability and integrity of the information,
How to obtain informed consent of a patient at a remote centre?
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More Questions...Who will be held responsible and liable for the
negligence and failures, risks and hazards, and inadequacies and complications arising out of the teleconsultation?
Which country’s litigation laws will be applied in case of a cross-border teleconsultation – those of the country in which the patient is living or those of the remote physician?
Does a screen-to-screen interaction with the remote physician infuse the same degree of confidence in the patient, as does a face-to-face consultation with a local physician?
Can the web camera catch the dark shades of an uncertain future in the eyes of the mother of two, whose young husband has recently been diagnosed to have cancer?
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“Everything can be taken from a man but the last of the human freedoms—to choose one's attitude in any given set of circumstances, to choose one's own way.”
Victor Frankl