1 Øystein nytrø, inger dybdahl sørby, thomas brox røst lecture 1 introduction to the course

1

Øystein Nytrø, Inger Dybdahl Sørby, Thomas Brox Røst

Lecture 1Introduction to the course

TDT4210 Helseinformatikk - Introduksjon 2

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


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)


Contact information

• Course web page:– 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


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


Course StructureLectures• 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


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


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 interfacesAMIA’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


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 development of methods, techniques and theory for systems development with the health sector and the accompanying study of information and information processes thereinThe 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


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”


Content overviewIntroduction - Motivation

Health sector organization

Use of EPR

Patient record structure and standards

Codes and content models

Knowledge representation Exercise 1, Knowledge repr.

HelsIT-2005 Exercise 1, Presentation

Decision support Exercise 2, Decision support

Development methodologies, HCI.

Specialist systems, directories

Current projects Exercise 2, Presentation

Architecture Exercise 3, Essay

Legal frameworks and access control

Aspects of organization - integration Exercise 3, Presentation

Summary, exam preparations


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


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


- 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


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


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


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, …


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


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 :-)


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…


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!


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


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!


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.


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?


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.


Duty to keep patient recordsAll 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.


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– ...

QuickTime™ og enTIFF (ukomprimert)-dekomprimerer

kreves for å se dette bildet.


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?


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


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

•


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


StatusTHE 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


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


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...


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)


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


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/ 105 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


World health parameters, 2000Source: UN Population Division

0

20

40

60

80

100

120

140

160

180

Least developed(668 Mpers)

Les developed(4,2Mpers)

More developed(1,2Mpers)

Population growth rate(births/1000)

Life expectancy at birth(years)

Mortality under age 5 (per1000 births


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



• 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



• 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


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.


Relevant national projects and plansThe “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


Recent, but important history:

• The electronic patient record – status and areas for collective action, (KITH,1998) http://www.kith.no/upload/921/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.no/index.gan?id=7349&subid=0&PHPSESSID=622e891a74041f7016fe7d2600282b38


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!


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…


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 ogi. en oversikt over nødvendig eller ønskelig samarbeid med andre tjenesteytere,

institusjoner eller etater.


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”

1 Øystein nytrø, inger dybdahl sørby, thomas brox røst lecture 1 introduction to the course

Documents

information science

course slide

information cen251

information processing

health sector

comparable slide

ntnu slide

conference slide