1. 1 Øystein Nytrø, Inger Dybdahl Sørby, Thomas Brox Røst Lecture 1 Introduction to the course

2. 2TDT4210 Helseinformatikk - Introduksjon Teaching Goals Overview of what health informatics is – and isn’t Course structure and methods Motivate health informatics as a separate discipline Understand why the health sector: –Is a very big sector –Has largely failed to use information systems efficiently –Has a huge potential for improved use of IT Understand that improved—and different—IT systems: –Can provide better health services both locally and globally Overview of specializations within health informatics and research activities at NTNU

3. 3TDT4210 Helseinformatikk - Introduksjon Facts Lecturers Inger Dybdahl Sørby, PhD student, IDI Thomas Brox Røst, PhD student, IDI Teaching assistant Kristina Haugen, IDI Subject teacher Øystein Nytrø, sabbatical year at CHI, UNSW, Australia Lecture times (lectures/exercises) Wednesday 10:15 – 12:00 (R4) Thursday 08:15 – 10:00 (F4)

4. 4TDT4210 Helseinformatikk - Introduksjon Contact information Course web page: –http://www.idi.ntnu.no/emner/tdt4210/2005/http://www.idi.ntnu.no/emner/tdt4210/2005/ Information will be sent to the mailing list and posted on the web page Use the mailing list! –Questions about the course –Discussion Meeting times, lecturers and teaching assistant: –To be announced

5. 5TDT4210 Helseinformatikk - Introduksjon What we expect of you: Background within computer science: Information systems System development methods Distributed systems and architecture User interfaces Knowledge technologies and concept modeling User-centered development “Medisin for ikke-medisinere” (medicine for non- medical persons) or comparable

6. 6TDT4210 Helseinformatikk - Introduksjon Course Structure Lectures Based on textbooks, scientific articles and reports Guest lecturers from KITH, SINTEF, NSEP, St.Olav and elsewhere. Will attempt to use local expertise when possible. Excursions and real life examples: Visits to system users System demonstrations Communicating with clinicians Do it yourself Exercise 1: Information and knowledge modeling of described phenomena in the patient record Exercise 2: Representation of procedures/guidelines for chosen clinical problems Exercise 3: Essay within a ”freely” chosen health informatics topic Participate at the HelsIT 2005 conference

7. 7TDT4210 Helseinformatikk - Introduksjon Exam and grading Grade: –2/3 exam –1/3 exercise 3 (essay) Exam: –December 2 –Written, 4 hours, no support materials allowed –Mixture of multiple choice and discussion topics

8. 8TDT4210 Helseinformatikk - Introduksjon Definitions: AMIA’97: Clinical information management Expert systems and algorithms Health information networks Image- and non-textual data Information retrieval and digital libraries Standards and policies Training, education and cognitive sciences User interfaces AMIA’99: Representing knowledge Acquiring and presenting data Managing change Integrating information CEN251 A scientific discipline that concerns itself with the cognitive, information processing and communication tasks of health care practice, education and research, including the information science and technology to support these tasks. CEN: Comité Européen de Normalisation, AMIA: American Medical Informatics Association

9. 9TDT4210 Helseinformatikk - Introduksjon The development of methods, techniques and theory for systems development with the health sector and the accompanying study of information and information processes therein The discipline of informatics, uses and develops theories and methods from: Information systems development Knowledge technologies Data, information and knowledge modeling Human-computer interfaces Empirical methods to observe and describe Usage-oriented, towards systems that: Are used by those that treat patients (clinical information systems) Store and process data, information and knowledge on identifiable patients under treatment

10. 10TDT4210 Helseinformatikk - Introduksjon What is health informatics? Health informatics is wide-ranging: Deals with the complex mixture of people, organizations, problems, illnesses, patient care and treatment Not just: –Bioinformatics: Computerized methods for analysis and synthesis; not human-oriented –Medical informatics: Diagnostic aids for disease studies and treatment –Telemedicine: Health sector with phones, phone conferencing and “lange windows-løsninger”

11. 11TDT4210 Helseinformatikk - Introduksjon Content overview Introduction - Motivation Health sector organization Use of EPR Patient record structure and standards Codes and content models Knowledge representationExercise 1, Knowledge repr. HelsIT-2005Exercise 1, Presentation Decision supportExercise 2, Decision support Development methodologies, HCI. Specialist systems, directories Current projectsExercise 2, Presentation ArchitectureExercise 3, Essay Legal frameworks and access control Aspects of organization - integrationExercise 3, Presentation Summary, exam preparations

12. 12TDT4210 Helseinformatikk - Introduksjon Course focus Motivation and problem understanding Illustrative examples Technology-oriented Specialized methods from computer science Representation Not (in general): –System introduction and use –Sociological/organizational aspects

13. 13TDT4210 Helseinformatikk - Introduksjon Some terms (in ”nynorsk”) I helse f2 (norr heilsa ; smh med I heil, hell ) 1) (vanleg) god fysisk (og psykisk) tilstand, friskleik, kraft få, ha helsa / miste helsa / det gjekk på helsa laus / slit det med helsa fast vending når ein gjev bort noko til bruk 2) fysisk (og psykisk) tilstand; konstitusjon ha dårleg, veik, god h- / helsebot det er h- i kvar drope medisi'n m1 (lat. ( ars ) medicina, av mederi 'lækje') 1) lækjevitskap, lækjekunst indrem- / naturm- / studere m- 2) lækjemiddel, medikament; botemiddel sovem- / ta m- / ofte overf: ein beisk m- helsetenest ( e ) teneste, service som offentleg helsestell yter primær h- helseteneste utanfor sjukehus el. tilsvarande institusjonar

14. 14TDT4210 Helseinformatikk - Introduksjon - In other words: Health is: Subjective Individual The most important characteristic of life itself Medicine is: Multidisciplinary, based on the natural sciences in its study of disease, engineering science in development of tools and therapy, and with the purpose of understanding, treating, curing or relieving within a broad range of physiological, psychological and social problems Short-term, oriented towards disease and actions Health services are: Knowledge intensive: About illness, phenomena, diagnoses, actions Information intensive: About patients, care givers, supply, patient histories, observations, population, epidemiology, etc. Long-term, preventive, care giving

15. 15TDT4210 Helseinformatikk - Introduksjon Why “health” informatics? (1) Because the health sector has: A long track record of ambitious projects Practiced “Yellow-page contracting”: IT systems as merchandise rather than an organic part of the health sector. The belief that the supplier knows what’s best for the customer A continuous inflow of silver bullets that purports to solve all problems and “take care of business” Lack of insight into opportunities, coupled with exaggerated faith in own competencies Resistance towards spending the time required to introduce new systems, or to surrender power granted through information ownership Few local/personal benefits from simplifying information flow or information quality Lack of coordinating abilities or insight Privatized primary care Forgotten that they (also) are information workers

16. 16TDT4210 Helseinformatikk - Introduksjon Why health ”informatics”? (2) Because the IT sector has: A lack of insight into health and understanding of complexity Created to many poor and useless systems Meager profits, a lot of internal competition and lack of cooperation. Everybody wants to do everything and preferably “hug the customer”. The sector is immature. Information systems and development methodologies that are not adapted towards information intensive, complex and rapid cooperation processes Too easy to sell a solution without grounding it: Development is not done together with those that end up using the systems

17. 17TDT4210 Helseinformatikk - Introduksjon Health + informatics Informatics is about methods, models and theories of information, processing and representation. Neutral and application independent. Health is about life and quality of life. The health sector is a web of services and people. Information on illness, observations, events, causes, processes, decisions, treatments, medication, biometry, plans, actions, outcomes, guidance, goals, intentions, reactions, …

18. 18TDT4210 Helseinformatikk - Introduksjon State of affairs: All hospitals have EPR All general practitioners have EPR You can not transport your journal in electronic form from one place to another No common structure or semantics for information exchange. Electronic messaging of discharge notes, referrals and prescriptions is in trial in some places. In spite of determination and willingness to invest: In terms of information technology the health sector is 10 years behind what users expect with respect to functionality –Social and human phenomena are difficult to represent and support in information systems –It is difficult to integrate information systems in informal processes. Health is extremely information and knowledge intensive Huge potential for increase in quality and efficiency

19. 19TDT4210 Helseinformatikk - Introduksjon We focus on the application of technology This course is not an introduction to computer science for health workers… –but an introduction to specific problems, methods and solutions adapted to the needs of the health sector. This course is not an introduction to system development and system development methodologies for engineers This course offers: –Few recipes and ready-made answers –Insight into some problem areas and approaches to solutions that are continuances and adaptations of informatics This course is a useful introduction if you intend to delve deeper into health informatics… but far from enough :-)

20. 20TDT4210 Helseinformatikk - Introduksjon Is health more difficult than other application areas? Covers a lot more ground: –The entire population –Throughout life –Many different institutions and roles that are supposed to cooperate People don’t sit around, quietly tampering with data, forms, screens and mice: They treat patients! Computers interfere! Complex, long-term and critical processes In Norway, more people die as a result of lacking or wrong information in the health sector than from traffic accidents… Major demands of security and reliability Long history of inflated optimism and ignorance – internationally…

21. 21TDT4210 Helseinformatikk - Introduksjon Usage orientation is challenging! A common, external goal With direct relevance for future society Close to reality Multidisciplinary Good ideas and cunning solutions come about as a result of real and hard problems! Technology only has meaning within a context It is used by people, in a community, with a purpose... Remember this!

22. 22TDT4210 Helseinformatikk - Introduksjon Some motivating numbers (2002) The health sector is the biggest sector in Norway 4184456 hospital bed days in 2001 In the municipal health services (home and senior care exempt) there are: 3860 doctors, 3745 physiotherapists, 279 midwifes, 1801 public health nurses More than 1/3 of the time in primary care is spent reporting to the public authorities. A hospital doctor will spend more than 1/3 of his or hers time searching for information. The 2001 budget for health and social services in Trondheim was 4,5 billion Norwegian kroner

23. 23TDT4210 Helseinformatikk - Introduksjon Additional motivation... Health services is the biggest industry in Norway (and the western world). Improved diagnostics and technology will not reduce the need for health services. Complex, long-term, multidisciplinary processes and dependency chains Extremely information intensive Almost no IT infrastructure, 20 year lag Lack of competence and maturity among suppliers and users Public will to invest, but lack of knowledge and reluctance to accept responsibility Readily available information and knowledge on practice is the easiest way to bring health services to developing countries Telecom satellite operators will this autumn (2005) announce the donation of 1 % of their traffic capacity to health in developing countries. Free telecommunications for health in Africa!

24. 24TDT4210 Helseinformatikk - Introduksjon The central challenges: A plethora of disconnected, inherited systems: –Accounting –Planning and logistics –Patient administration –X-ray, lab systems, MR systems,... Low degree of information flow between organizations and service providers: –A patient will roam between organizations and between doctors, with different illnesses and problems... –Do we have the necessary means of communication to provide the patient with effective health services? Relevant clinical information is not available for the right person at the right time and place. Relevant clinical knowledge is not available in the health information systems. Low quality of information: Inconsistencies and errors The patient is not a part of the information flow: No control or participation.

25. 25TDT4210 Helseinformatikk - Introduksjon Some methodical questions: Why, and for whom is the system developed? Does the system work as wanted/presumed/constructed? Is the system used as assumed? Cost/benefit? Do we achieve the expected results? – And how do we measure the effect? How does the system affect the organization, - and vice versa? Does technology reduce complexity and increase robustness?

26. 26TDT4210 Helseinformatikk - Introduksjon Current issues: Patient-centered documentation and use of health information for seamless cooperation about health services. Process-integrated decision support based on empirically founded medical research. Extensive use of patient/record information for research and reporting Combine health and bio data. Structured and knowledge rich goal/plan conscious patient records. Architectures that support cooperation across organizations and levels: Support for delegation, roles, access control, security and safety. Common paths and guidelines for health services, cooperation, diagnostics and treatment. – Integrated in clinical information systems.

27. 27TDT4210 Helseinformatikk - Introduksjon Duty to keep patient records All providers of health services are in principle legally required to keep a record. (The Health Personnel Act): § 39. Duty to keep patient records The health care provider shall enter or record information as mentioned in section 40 in a patient record for the individual patient. The duty to keep patient records does not apply to co-operating personnel providing care in accordance with instructions or guidance from other health personnel. Health institutions shall designate one person with superior responsibility for the individual patient record including making decisions relating to what information is to be entered into the patient record.... § 40. Requirements to the contents of patient records etc. The patient records shall be kept in accordance with good professional conduct and shall contain relevant and necessary information about the patient and the health care, as well as the information that is required in order to comply with the notification requirements or the duty of disclosure laid down in or pursuant to law. The records shall be easy to comprehend for other qualified health personnel. It shall be evident from the records who has entered the information into the patient records. 41. Duty to provide patient access to records The health care provider shall provide access to the patient records to anyone entitled thereto pursuant to the provisions of the Patients Rights Act section 5-1. In health institutions the person with superior responsibility for patient records pursuant to section 39 shall make sure that access is provided pursuant to the first paragraph.

28. 28TDT4210 Helseinformatikk - Introduksjon The patient record ”Norgesjournalen” –Hierarchical, folder-oriented, based on document type Collection of –notes –prescriptions –test results –images –medication logs –letters, reports –admission notes –discharge notes, referrals –...

29. 29TDT4210 Helseinformatikk - Introduksjon The electronic patient record Norwegian –EPJ: “Elektronisk pasientjournal” English –EHR: Electronic health record –CPR: Computerized Patient record –CMR: Computerized Medical record The record is: –A legal document that fulfils legal demands for documentation of health services. –A log used by health personnel –A tool? –A foundation for research?

30. 30TDT4210 Helseinformatikk - Introduksjon EPR standard: Architecture, archiving and access control Prepared by a project group presided by KITH and commissioned by the Ministry of Health and Social Affairs (now the Ministry of Health and Care Services) Based on laws and regulations together with relevant Norwegian and international standards To be used in all kinds of health service operations and contain all types of information –Describes, among others, a basic, general journal architecture (concrete document types are not described) –Shall form the basis of journal information exchange between health service operators

31. 31TDT4210 Helseinformatikk - Introduksjon Content ≠ System ≠ Interface ≠ Model Record contents has potential meaning for many roles and in many situations One can imagine that electronic media can be used to: –Navigate through information –Filter information –Adapt information to users (doctors, nurses, patients) and situations Access control: –Patient only –With patient consensus –Health personnel with rights of action –Emergency situations Research Sharing –Doctor’s office/municipality/ hospital/region/national/ international Record and record system architecture

32. 32TDT4210 Helseinformatikk - Introduksjon Society challenges Increase quality through –Health sector transparency –Comparability and capacity of cooperation Increase efficiency through –Information sharing –IT-supported processes –Integration of all boxes and wires… Focus shift –From tools to systems, from function to use, from transmission to information Norway is a unique laboratory for health informatics

33. 33TDT4210 Helseinformatikk - Introduksjon Status THE WORLD: Major scientific activity, conferences, journals, organizations on global, continental and national levels. Specialization in medicine, and partly in informatics Ca. 100 university institutes world wide Research communities in WHO, ISO, CEN et al. NORWAY: Initiatives in bioinformatics Major initiatives in telemedicine Large investments, with no clear demands, in hospital EPRs Anarchistic development of infrastructure (health network/”helsenett) No central, governing competence KITH: Advisory, project driven The Norwegian Medical Association: ELIN The Norwegian Research Council: EPR center Lack of competency among suppliers, users and buyers

34. 34TDT4210 Helseinformatikk - Introduksjon Trondheim: 15 post-graduate fellowships working within EPR. 9 different councilors, 5 health service grad students, 2 social sciences, 8 informatics and IT background More than 65 workshops/lectures through Digimed FOU, the Kvalis project and the HJELP project. Two courses in health informatics systems for computer scientists. Further and upgrading courses in health informatics for computer scientists 3 Scandinavian courses in medical informatics for health personnel in 2002 KITH, SINTEF, HFMN, St.Olav and industry has many activities with NTNU 5-6 active subject teachers at IME, HF, SVT, DMF Education at HIST (supplied by KITH) DIGIMED (NTNU, SINTEF, KITH, LEN). Incubator and arena for R&D Major IDI/DMF/NTNU-support to various lab activities

35. 35TDT4210 Helseinformatikk - Introduksjon Curriculum Handbook of Medical Informatics, Springer 1997 www.mieur.nl/ mihandbook/r_3_3/handbook/home.htm Selected papers and reports Exercise literature Literature used for the essay Standards, laws Guest lectures and other happenings...

36. 36TDT4210 Helseinformatikk - Introduksjon Textbook curriculum (1) Ch 1: Background Ch 6: Coding and classification –Supplemented by ICPC handout, and talk (ppt) by KITH-people Ch 7: The patient record –Supplemented by talk (ppt) by me Ch 9: Medical imaging –Background material Ch 11: Primary care –Supplemented by material from Anders Grimsmo (ppt), Tom Christensen and Ole Martin Winnem –Various material from assignment 1 Ch 12: Clinical departmental systems –Not lectured (planned guest lecture)

37. 37TDT4210 Helseinformatikk - Introduksjon Textbook curriculum (2) Ch 13: Clinical Support Systems Ch 14: Nursing Information Systems Ch 15: Methods for Decision Support Ch 16: Clinical Decision-Support Systems –And guidelines material through assignment 2 Ch 17: Strategies for Medical Knowledge Acquisition Ch 19: Health Care Modeling –And additional material about Norwegian healthcare organization Ch 20: HIS: Clinical use Ch 28: Modeling for Decision Support Ch 29: Structuring the CPR –Additional material from Torbjørn Nystadnes/KITH Ch 33: Security in Healthcare systems –And Sampro lecture Ch 34: Standards in Health Care

38. 38TDT4210 Helseinformatikk - Introduksjon Global health challenges Increasing health services costs (especially if privatized): –USA: 15% of GDP in 2003 –OECD average: 9% –Expected increase of 3-4 % over the next 5 years. Increasing treatment costs: –Focus on development of high-cost (and high profit) procedures, tools and medications. Mass medications of large population groups, customized actions and medicines. –Dubious cost-benefit effect, both on a national and global level. 90% rule: –10% of the population will use 90% of the resources Global disparity (doctors/ 10 5 citizens) (www.who.int/globalatlas): –Angola 7,7 –Norway 355,6 –Cuba 590,6 The global population is getting older Consumerism: Use of health services is a benefit for the rich Technology provides more knowledge on new methods and diseases

39. 39TDT4210 Helseinformatikk - Introduksjon World health parameters, 2000 Source: UN Population Division

40. 40TDT4210 Helseinformatikk - Introduksjon More facts and numbers (1) On a European level, capital expenditure within the health sector grew 52 % faster than the entire European economy in the 90-s. The National Hospital’s transition to electronic record solutions is expected to provide savings of $66 millions from a total budget of $925 millions. According to a Business Week article, this will pave the way for wholly new application areas: "More important, once all records are digitized, the hospital will be able to do things never possible before – compare productivity in different departments, examine workflows to streamline operations, even mine anonymous patient records for hidden health-care patterns." –http://www.businessweek.com/magazine/content/05_13/b3926998_mz001. htm

41. 41TDT4210 Helseinformatikk - Introduksjon More facts and numbers (2) In the USA alone, between 44,000 and 98,000 people die every year as a result of wrong medical treatment, including medication errors. An American study estimates that improved information systems could have prevented 2 million medication errors and 190,000 hospital admissions a year. –http://economist.com/displaystory.cfm?story_id=3909439

42. 42TDT4210 Helseinformatikk - Introduksjon More facts and numbers (3) A recent study estimates that the American health sector can save up to $77.8 billion a year by introducing standardized, interacting health information systems –http://content.healthaffairs.org/cgi/content/full/hlthaff.w5.10/DC1

43. 43TDT4210 Helseinformatikk - Introduksjon

44. 44TDT4210 Helseinformatikk - Introduksjon The health reform The regular GP scheme (“fastlegeordningen”) Free choice of hospital Independence of regular GPs Shutting down of county municipality health, establishing “regional health concerns” with complete responsibility of specialist health care.

45. 45TDT4210 Helseinformatikk - Introduksjon Relevant national projects and plans The “eNorge” plan: Ambitious goals for broadband, without public support. Spreading slowly. Lack of public support for IT infrastructure Public strategic plans (and projects) for IT in health services: Nora (1980´s-) Medina (1994-1998) Medakis (1998-2002) Mer helse for hver bit 1997 Si @, 2001 S@mspill 2007, 2004

46. 46TDT4210 Helseinformatikk - Introduksjon Recent, but important history: The electronic patient record – status and areas for collective action, (KITH,1998) http://www.kith.no/upload/92 1/R09-97PlanEPJNorge.pdf http://www.kith.no/upload/92 1/R09-97PlanEPJNorge.pdf Big is Beautiful (Ellingsen, Monteiro, 2001) Report on “The influence of information technology on the medical work day” (DNLF, 2000) http://www.legeforeningen.n o/index.gan?id=7349&subid =0&PHPSESSID=622e891a 74041f7016fe7d2600282b38

47. 47TDT4210 Helseinformatikk - Introduksjon The goal for S@mspill 2007 Seamless integration of health services Less “@” (“at”), more “crosswise of level and place”. Improve information flow between participants that already HAVE begun some sort of electronic interaction. Introduce new groups to electronic interaction, especially: –Municipal health care – local hospitals –To disseminate standards Few central funds, presumes financing from regional health enterprises!

48. 48TDT4210 Helseinformatikk - Introduksjon Regulation concerning an individual plan § 4. Rights of the service recipient A service recipient who requires long term and coordinated health and/or social services, is entitled to the preparation of an individual plan. The service recipient is entitled to participate in the development of the individual plan, and arrangements shall be made towards this end. Next of kin shall be included to the extent desired by the service recipient and the next of kin…

49. 49TDT4210 Helseinformatikk - Introduksjon Regulation concerning an individual plan § 7. Innholdet i individuell plan Den individuelle planens innhold og omfang skal tilpasses behovene til den enkelte tjenestemottaker. Det skal under utarbeidelsen av planen tas hensyn til tjenestemottakerens etniske, kulturelle og språklige forutsetninger. Planen skal inneholde følgende hovedpunkter: a.en oversikt over tjenestemottakers mål, ressurser og behov for tjenester, b.en oversikt over hvem som deltar i arbeidet med planen, c.en angivelse av hvem som gis et ansvar for å sikre samordningen av og framdriften i arbeidet med planen, d.en oversikt over hva tjenestemottakeren, tjeneste- og bidragsyterne og ev. pårørende vil bidra med i planarbeidet, e.en oversikt over hvilke tiltak som er aktuelle og omfanget av dem, og hvem som skal ha ansvaret for disse, f.en beskrivelse av hvordan tiltakene skal gjennomføres, g.en angivelse av planperioden og tidspunkt for eventuelle justeringer og revisjoner av planen, h.tjenestemottakerens samtykke til at planen utarbeides og eventuelt samtykke til at deltakere i planleggingen gis tilgang til taushetsbelagte opplysninger og i.en oversikt over nødvendig eller ønskelig samarbeid med andre tjenesteytere, institusjoner eller etater.

50. 50TDT4210 Helseinformatikk - Introduksjon Ambitions (what I want to change, by teaching you…) From an EHR system as a monolithic thing –To a collection of components and functions that encapsulates and separate: Representation, encoding and clinical content, Knowledge about use: Plans, guidelines and procedures Access control and security User- and situation-specific user interfaces From systems as something bought and installed –To systems developed in cooperation with the user, and integrated with organization and work processes. From a letter-based, responsibility-passing care system –To cooperation around common and shared patient plans. From a patient regarded as an object in an industrial plant –To an individual with a continuous history and plan From clinical users as distant production workers to –System designers with system “ownership”