CS5038 The Electronic Society

1. CS5038 The Electronic Society • Lecture : eHealth • Lecture Outline • The Future of Healthcare - The banking metaphor • Existing Health on the Web • eHealth - terminology • Transmural Care • Electronic Medical Records (EMR) • Medical Records - Access • Clinical Decision Support Systems • Telemedicine - Case Studies • eHealth Standards • eHealth / eScience : Cancer Diagnosis • Benefits of eHealth • Medical Errors • Why is eHealth Adopted Slowly? • New sources of "health"

2. eHealth - The Future of Healthcare The banking metaphor • Most transactions carried out by the customer • Centralisation of specialist services • Decentralisation of non-specialist services

3. Existing Health on the Web • Estimated to be ~20,000 health websites1 • Used by 98 million adults2 • 75% of people who have web access • average of 3.3 times per month • More than consult doctors each day3 • 7M e-patients/day on the net; 2-3M patients see a doctor

4. Existing Health on the Web • Access to accurate information can lead to • more knowledgable, empowered, less anxious patients • more participatory health decisions • better care as patient and doctor become partners • Mis-information can lead to • confused and angry patients • bad decisions, mis-placed hope, worse care, harm • Privacy violations can cause emotional and economic damage

5. eHealth “Healthcare which is supported by electronic processes” Other terms: • Healthcare informatics or Health Information Technology (HIT) • Medical Information Systems (MIS) • Biomedical informatics (also includes Bioinformatics: gene sequencing etc.)

6. eHealth “Healthcare which is supported by electronic processes” eHealth includes: • Electronic Medical Records: easy communication of patient data between different healthcare professionals (GPs, specialists, care team, pharmacy) • Telemedicine: do not require a patient and specialist in same physical location. • Decision support systems in healthcare • Data can be analysed to provide alerts, reminders and real-time decision aids • Evidence Based Medicine: • The application of the scientific method to medical practice • Check if diagnosis is in line with scientific research. • Data can be kept up-to-date. • Citizen-oriented Information Provision: for both healthy individuals and patients • Specialist-oriented Information Provision: best practice guidelines from latest medical journals. • Virtual healthcare teams: collaborate and share information on patients through digital equipment (for transmural care).

7. Transmural Care Transmural: Care should not stop at the walls of the hospital • Both intra- and extra-mural, thus ‘transmural care’. • Care before, during and after the hospital stay. • Cooperation and coordination among local practitioner, hospital, home care and rehabilitation centres • Patient part of an agreed programme - protocols and standards.

8. Electronic Medical Records (EMR)(also called Electronic Health Record (EHR)) • Access of patient data by clinical staff at any given location • Accurate and complete claims processing by insurance companies • Building automated checks for drug and allergy interactions • Clinical notes • Prescriptions • Scheduling • Sending and viewing labs

9. Electronic Medical Records (EMR)(also called Electronic Health Record (EHR)) Two types of record: • “Born digital" record : information originally entered in electronic format • “Digital format” record : originally produced in a hardcopy form (x-ray film, photographs, etc.), scanned or imaged and converted to a digital form. Also: Personal Health Record (PHR) - stored and maintained by the patient. • Issue: Home computer vulnerable to attack

10. Electronic Medical Records (EMR) Maintaining Records • May be required many years after a patient’s death • Insurance claims or murder investigation • Investigate illnesses within a community • industrial or environmental disease • doctors committing murders • need for periodic conversion and migration to ensure the formats they were captured in remain accessible • Media degrades • Media becomes obsolete • protection of privacy is a major concern - need privacy and security policies

11. Electronic Medical Records (EMR) Abuses • Outsourcing of transcription and storage: Could violate patient-physician confidentiality • Governments may refuse to disclose records of military personnel used as experimental subjects. • http://www.guardian.co.uk/military/story/0,11816,1331784,00.html

12. Electronic Medical Records (EMR) NHS project in UK: One of the largest projects in the world for a countrywide EMR • Goal: 60,000,000 patients with centralised EMR by 2010. Guardian, August 2011 : • The Department of Health will not deliver the £11bn programme .... and has been "unable to demonstrate" any benefits for the taxpayer • MPs said the intention of creating electronic records was a "worthwhile aim" but one "that has proved beyond the capacity of the department to deliver". • ... the scale of the project has caused companies to walk away • Officials were "unable to show what has been achieved for the £2.7bn spent to date on care records systems”

13. Medical Records - Access Laws governing access to medical records: In the UK: • Data Protection Acts & Freedom of Information Act 2000 • Patients or their representatives have the right to a copy of their record. Except: • where information breaches confidentiality (e.g. information from another family member or where a patient has asked for information not to be disclosed to third parties) • where information would be harmful to patient's well-being (e.g. some psychiatric assessments). • Patients have the right to check for any errors in their record and insist that amendments be made if required.

14. Medical Records - Access Laws governing access to medical records: In the US: • Only patient and health care providers directly involved in delivering care have the right to view the record. • Patient may grant consent for any person to evaluate the record. • Special Situations. • Capacity • When a patient does not have capacity, a legal guardian is designated • Medical emergency involving a non-communicative patient • Consent is assumed unless written documentation has been drafted previously • Research, auditing, and evaluation • Individuals involved in research have access. They are not allowed access to identifying information. • Risk of death or harm • Information can be shared without permission if failure to do so would result in death or harm.

15. Clinical Decision Support Systems • Software to aid clinical decision-making; characteristics of patient are matched to knowledge base, recommendations are presented to the clinician/patient (Sim et al, JAMIA, 2001) • Objectives: • Diagnostic support • Drug dosing • Preventive care reminders • Disease management (diabetes, hypertension, AIDS, asthma) • Test ordering, drug prescription

16. Clinical Decision Support Systems • Methods: • rule-based, bayesian network, neural network, fuzzy logic, genetic algorithms, case-based reasoning, etc. • Forward reasoning (data-driven) use if sparse data • start with data, execute applicable rules, see if new conclusions trigger other rules: • if high WBC AND cough AND fever AND etc. => pneumonia • if pneumonia => give antibiotics, etc. • Backward reasoning (goal-driven) use if lots of data • start with “goal rule,” determine whether goal rule is true by evaluating the truth of each necessary premise • patient with lots of findings and symptoms • is this lupus? => are 4 or more relevant criteria satisfied?

17. Telemedicine “The delivery of medicine at a distance.” Two basic forms: • Live telemedicine - videoconference link • Store-and-forward telemedicine - transmit for assessment offline Typical Telemedicine interaction: store and forward followed by live interaction. • Data types • text (e.g. patient's notes) • image (e.g. x-ray) Telemedicine often relies on images (still or moving) • Equipment • general purpose (e.g. PCs) • specialist (e.g. electronic stethoscope)

18. Telemedicine (contd.) “The delivery of medicine at a distance.” Telemedicine most useful when • Specialist services are in very high demand or • Patients are extremely isolated (Antarctica or remote communities in Australia, Africa and Alaska) Home care is often delivered by telemedicine • Automatic monitoring and pill dispensing etc. Telesurgery may also be considered as a subset of telemedicine. • Patient operated on by remotely controlled robotic arms etc.

19. Telemedicine - Case Study • 8 Cornwall hospitals - Minor Injury Units: • replacing "unviable" accident & emergency departments • nurse led • Before: • No access to specialist consultants • Long wait for GP to be called in • After: • Linked to specialist consultant in Royal Cornwall Hospital • Recorded sessions useful for training nurses and for audit • Cornwall Healthcare Trust expects to save £100,000 a year • http://www.bthealth.com/casestdy/cstudy/case11.htm

20. Telemedicine - Case Study • NHS Direct • http://www.nhsdirect.nhs.uk/ • Biggest telemedicine project in the world • Mainly telephone service • Expanding to: • Web • Online diagnosis for common conditions • Health encyclopaedia • My NHS healthspace (personal info portal): news, reminders, knowledge • Digital TV More information on Telemedicine: www.teis.nhs.uk

21. eHealth Standards Not-for-profit organisations involved in the standardization process • American Society for Testing and Materials (ASTM), • Health Level 7 (HL7) • Healthcare Information and Management Systems Society (HIMSS) • CEN (European Committee for Standardisation) • ISO TC215 Controlled medical vocabularies: • Standardized Nomenclature of Medicine, Clinical Terms (SNOMED-CT) • Logical Observation Identifiers Names and Codes (LOINC) • OpenGALEN Common Reference Model

22. eHealth / eScience : Cancer Diagnosis Telemedicine on the Grid • Multi-site videoconferencing • Real-time delivery of microscope imagery • Communication and archiving of radiological images • Supports multi-disciplinary meetings for the review of cancer diagnoses and treatment. • Remote access to computational medical simulations of tumours and other cancer-related problems • Data-mining of patient record databases • Improved clinical decision making. • Currently clinicians travel large distances • Grid technology can provide access to appropriate clinical information and images across the network. More Information: http://www.escience.cam.ac.uk/projects/telemed/ http://www.rcuk.ac.uk/escience/examplesh.asp

23. Benefits of eHealth • Reduced record keeping expenses • More accurate data • No poor handwriting problems • Automated sharing among patients and provider • Empower the patient to manage their own health - via Internet information and decision support tools • Reduced office visits to get results • Avoidance of duplicating tests • Automatic summarisation/graphical displays of context-relevant information to the physician

24. Benefits of eHealth (contd.) • Decision Support Tools -> Improved decisions • Remote access to data - e.g. ill while travelling • Improved workflows • Decreased risk of malpractice suits • Ability to mine large record databases • Research causes of disease • Assess effectiveness of treatment programmes/drugs • Monitor outbreaks of diseases • Easier to conduct clinical trials and rapidly incorporate research results in decision support tools

25. Medical Errors • Human Errors: • IOM Report, 1999 • 44,000 to 98,000 die in US annually from medical errors • at 44,000, would rank as 8th leading cause of death • car accidents: 43,458 • breast cancer: 42,297 • AIDS: 16,516 • 7000 deaths from medication errors alone

26. Medical Errors • Does Software Help? • Therac-25 • Radiation therapy machine • At least six known accidents between 1985 and 1987 • Patients were given massive overdoses of radiation • At least five patients died of the overdoses • Causes: both organisational and technical • 100 medical software recalls annually, 40 for software errors

27. Why is eHealth Adopted Slowly? Public Services(Health…) 2010 - WRONG! Business Services(Banks) Integration of IT Manufacturing 1980 1990 2000 Jean-Claude Healy May 2000 IT as a gadget Trojan horse: networks, … Full Integration of IT into Business (Organisational, Legal) Re-engineering of the system

28. Why is eHealth Adopted Slowly? • Lags behind other industries by 10-15-20? years • Complex regulations - e.g. • Patient records • Privacy laws • Lack of interoperability/standards • Doctors reject IT systems • Scale – hospitals have lots of staff, lots of systems Risks • Potential for errors due to software bugs • Highly coupled systems - greater risk of catastrophe • Decision support systems could lead to mass produced mistakes • Privacy - data vulnerable to attack

29. Why is eHealth Adopted Slowly? • Many projects have been abandoned after massive investment • Report by Standish Group (‘95): • $250 billion each year on 175,000 IT projects • 31% projects cancelled before completion = $81 billion for canceled projects • 53% of projects cost 190% of estimated costs

30. New sources of "health" 1

31. New sources of "health" 2

32. New sources of "health" 3

33. eHealth - Busan, S Korea • Medical Tourism • 2 hours by air for 2 billion people • 1% with disposable income = 20 million • Cardiac - Cancer - Mental Health • Costs can be competitive • Popular tourist resort for families

34. Summary • The Future of Healthcare - The banking metaphor • Existing Health on the Web • eHealth - terminology • Transmural Care • Electronic Medical Records (EMR) • Medical Records - Access • Clinical Decision Support Systems • Telemedicine - Case Studies • eHealth Standards • eHealth / eScience : Cancer Diagnosis • Benefits of eHealth • Medical Errors • Why is eHealth Adopted Slowly? • New sources of "health"