1. IASSIST 2005 Edinburgh – May 26 th 2005 Information Issues in Health Networked Organizations: cooperative work and new relationships Christian BOURRET

2. Contents Background The rise of Networked Health Information and Data: Issues and Needs 3 Levels in Decision Making Main Challenges of Information Sharing Specific aspects of Health Data New tools and competences Conclusion

3. Background A networked society: both society of information (Castells and Aoyama), knowledge and services with strong specificities in Health field We talk about e-Health Challenges of quality improvement and costs mastering: 11% GNP in France and Germany, 15% in USA. Towards 20% ?

4. Background (2) Compartmentalization cf Glouberman – Mintzberg and the four different worlds in hospitals: - cure (physicians), - care (nurses), - administration (managers) - and collectivity (board) = 15 % of global costs (MEDEC 2005)

5. Health systems’ reforms are torn between four conflicting goals: - health systems’ financial viability - equal access to care - quality of care - patients’ and professionnals’ liberty (Palier) There exists 3 types of health systems: national (Beveridge = taxes), social insurance (Bismarck = social contributions), mixed = competition (USA). Background (3)

6. Regulation = to position between two extremes : - Health does not have a price - It is a commodity like the others (market = free competition) 3 possibilities of regulation : negotiation (physicians and health insurance in Germany), market (competition between private insurance in USA), State (control and care limitations in United Kingdom) … France gets into a mess … Background (4)

7. Networked Organizations Two types of networks : - Networks for transferring data (Internet, French RSS …) - Networks between organisations for co-ordination of management and traceability of patients’ pathways. Three types of healthcare organizations: providers (hospitals, primary care teams, Spanish ambulatorios …) and purchasers (American HMO, British PCT, Catalan CatSalut …), mixed. The choice of primary care: United Kingdom, Canada (Quebec, Ontario), Spain, Sweden … In France the weight of hospital  need for interface organisations

8. The rise of HealthCare Networks Towards new organisations in health’s proximity. A French experiment centred on information sharing : health networks Two different approaches :  General Practitioners  Health or Insurance Organizations cf American HMO and Managed Care The oppositions: health care (cf WHO) / cure or private insurance / solidarity Try to converging => French law of March 4th, 2002

9. The Health Network Components Health Network centred on the Patient Institutions : * Ministry of Health * Health Insurance * Hospitalisation Regional Agencies * Local authorities Establishments : * Hospitals * Clinics Physicians : * Family practitioners * Specialists * Group offices Other medical or paramedical professions : * Medical analyses * Radiology * Dentists * Chemists * Nurses * Midwives * Physical therapists * Social workers * Social youth workers * Psychologists

10. HealthCare networks (in the law of March 4th 2002 on Patients’ Rights and Quality of the Health System) Chapter V, item 84 : “Health networks aim at favouring access to care, co-ordination continuity or interdisciplinarity of sanitary taking care, especially these specific to some population pathologies or sanitary activities. They insure a taking care adapted to the person ’s needs, as well as on the field of health education prevention diagnosis as they can take part in public health actions as treatment. They set up assessment (evaluation) actions to guarantee the quality of their services and benefits ”.

11. In other countries - United Kingdom: London ex tuberculosis or children (Great Ormond Street Hospital) - Switzerland: cure coordinated networks ex Geneva, Lausanne … US HMO (Health Maintenance Organizations) model

12. Holographic Organizations - Networked organizations = project, quality management - Complexity management = « dialogic » principles (E. Morin) complementary of opposition visions : local / global, private / public, individual / collective, quantitative/qualitative… - Holographic organizations cf Shortell = the ability to embed the « whole » into each « part »

13. Data Needs (1) Medical errors : 50 000 to 100 000 deaths every year in United States = 30 % of medical errors came from problems of management of information and especially from patient’s identifiers. Needs for reliable data both to manage health systems (efficiency), improve healthcare quality and inform citizens (disease, prevention cf SHOW / NHS Scotland) – consumers for choosing healthcare providers (competition).

14. Data Needs (2) « Health systems should invest in automated health-data systems, including electronic medical records and systems to automate medication orders in hospitals. Better systems for recording and tracking data on patients, health and health care are needed to make major improvements in the quality of care ». Towards High-Performing Health Systems OECD Report to health Ministers – May 2004

15. Data Needs (3) Data for Decision Making in Health is necessary at 3 levels: - micro: between patients and physicians - meso: within health or insurance organizations (managed care) - macro: in regional powers and State governments With in background the issue of the new respective role of these actors, especially between States, local powers and Health or Insurance Organisations

16. Challenges “ The present inability to share information across systems and between care organisations represents one of the major impediments to progress toward shared care and cost containment ” (Grimson and al, 2000). Mastering processes = Coordination challenges = Information Sharing challenges

17. Information Sharing Challenges - interoperability between various legacy information systems (hospitals, doctors, British Primary Care Trusts, Health Maintenance Organizations in USA or Health Insurance in France, compagnies …), heterogeneous and distributed - identifiers issues - security & confidentiality stakes Within Information Systems and their basic components: shared Electronic Health Records

18. Added Value of Information Depends on its uses and users and not only on its purchase price Linked with stakes and risks Cf information value chain // with M. Porter And consequences : positives (using information) or negatives (not using) Reducing uncertainty, improving decision making and innovative capabilities

19. What means « right » information ? A central question is about the « right » information for decision making with for example the problem of opposite perceptions between doctors and managers Doctors, nurses, managers do not have the same perception of a successful operation cf Glouberman-Mintzberg and consequenly don’t ask the same data. Cf Marciniak : the role of information systems (IS) is both producing reliable data and organize convergence of actors’ views or perceptions (representations) = building shared meaning

20. Health Data are different from other data In France, law of January 1978 about “Informatics and Freedom”. Role of the CNIL European Act of October 24 th 1995 about sensitive and personal nature data, referring so to all data allowing a person’s identification. Its transcription in national legislations (delay for France) only in 2004. Information Access Commission of Quebec USA: HIPAA (Health Insurance Portability and Accountability Act) decree in 1996 effect in 2003.

21. Internet and Health Data Quality of information very unequal In June 2001, Direction of European Union Health and consumers protection points out: transparency and honesty explicit sources respect of private life maintenance and updating authors’ responsibility accessibility of data

22. Project DISCERN of the British NHS and Swiss project HON (Health On the Net). Rules of the following good practices : each medical opinion will be only given by specialised and qualified staff information spread on the site aims at encouraging and not replacing the existing relationship between the physician and the patient sources must be quoted help by financing must be identified (advertising) Internet and Health Data (2)

23. For stimulating users’ judgement, States may also create their own sites cf NHS Scotland (SHOW programme : Scottish Health On The Web) or the Canadian Health Network, a health Canadian priority. The British NHS is thinking in this way. Programmes linked to other actions : education of the citizens to health (prevention) and responsibilisation = Health Education Board of Scotland (HEBS). Internet and Health Data (3)

24. Electronic Health Record Various experiments United Kingdom = ERDIP (Electronic Record Development and Implementation Programme) / Information for Health. Huge investments. Operational in 2008 ? In USA: HMOs ex Kaiser Permanente EHR project and Federal project: an EHR for all American people in 2010. In France: Dossier Médical Partagé (DMP) = the main tool of August 2004 reform but … without money !

25. Information Systems Regional level ? Information System of CatSalut in Spanish Catalonia Evisand in Andalucia Hygeianet in Crete Primary Care – Hospital in Laval Region in Quebec In France Fieschi report points out regional information systems

26. New competences and professions Linked with information management and communication improvement : - Case managers in Canadian hospitals - Health webmasters - Health Data storage and administration - Health Networks Coordinators - Call centers staff: nurses / British NHS Direct or Catalan Sanitat Respon

27. Learning Organisations Information is no more a rare resourse but the main stakes are now assimilation and transformation into knowledge and into competences and even in health organisations in competitive advantage (Porter)

28. Organized Delivery Systems For S. Shortell and al., the key challenge is « building an effective community health care management system » = an « integrated » or, for us, better, an «organized » delivery system. Remaking Health Care in America, 1996.

29. The use of Health Data is at the core of Services, Information, Knowledge and Networked Society Health is not only a cost but an investment and with great future : it is THE main field of New Economy Conclusion