Health Information Systems Programme: Research and Development Overview

1. HISP - Health Information Systems Programme 1. Research and development in the health sector “South-South-North” software development& action research - Funding through NUFU & donors /health authorities in individual countries 1994/96 - started in South Africa 1998/99 started in Mozambique 2000/01 started in India, Malawi 2002/03 - Tanzania, Ethiopia, Nigeria, Namibia, Vietnam, etc 2. Educational program – Funding through Norad & QUOTE A. PhD program across academic fields focusing on HISP Students from participating universities registered at UiO B. Integrated Masters programmes in Informatics and public health in South Africa and Mozambique (+Tanzania & partly Malawi) C. Continuous education and training of health workers and managers Development & introduction of ICT require massive training! Training schemes base in the Masters programs

2. The Problem: Unify and integrate fragmented structures and information flows - The health sector is “crippled” by uncoordinated vertical structures DNHDP Western Cape City Health Births Deaths Notifiable diseases New /emerging flow of information City Health Clinic 3 City Health Clinic 1 Groote Schuur Hospital Outside hospitals City Health Clinic 2 City Health Clinic 4 School Health Geriatric Services PAWC MOU (Midwife& obstetric unit) PAWC Day Hospital DNHPD City Health Clinic 5 DNHDP Pretoria Private hospital: 31 medical specialists Psyciatric hospital PAWC Environmental office Dental unit 1 PAWC 54 private medical pract. RSC Dental unit 2 PAWC 23 private dental pract. UWC Oral Health Centre Dental unit 3 PAWC 12 private pharmacies 12-15 NGOs Mandalay Mobile clinic RSC Youth Health Services MITCHELL’S PLAIN Apartheid legacy: a fragmented and top down health structure no local governance & control of information

3. Two registration forms of activities/patients; representing same events

4. Information from other sources, e.g. Birth / death registers; TB register, census data, socio-economic data Higher levels HEALTH PROGRAMS Local Government Nutrition COMMUNITY STRUCTURES V E R T I C A L C O M M U N I T Y DISTRICT HEALTH MNG. TEAM TB Health & Welfare Forum Unions STD/ AIDS Health Committees DISTRICT INFORMATION SYSTEM & DATABASE Family planning Special Interest Groups School Health Referrals Traditional healers Day hospitals Clinics NGOs (Non-gov. Organisations) Dental Services Private Sector Psychiatric services Circumcision Surgeons Environmental Health Maternity/ Midwife units NON-GOVERNMENT GOVERNMENT HEALTH SERVICES

5. / HISP Background – Started in South Africa 1994 • The Health Information Systems Program (HISP) has been part of developing the Health Information System in South Africa since 1994: • developing software (DHIS), • training programs, • district based health information systems, • indicators, data standards • “models” for use of informationfor action • Best practices & software from South Africa later spread and further developed to a number of countries in Africa & Asia • Since 2005 EU /BEANISH supported and strengthened thisBEANISH /HISP network

6. / HISP DNHPD Cape Town Western Cape RSC Cape Town PAWC Clinic Clinic Malmesbury RSC RSC Clinic Clinic PAWC Clinic PAWC Clinic Hospital PAWC Private NGO School Health School MOU Hospital Health PAWC Private Private NGO South Africa - Legacy of apartheid: Inequity & fragmentation - Step 1: Focus on MUST know information & integration at district level Health programs Higher levels Mother Child Database Info. office A B • South Africa: • Post-apartheid: Inequity and fragmentation • - No shared information resources • - Process of standardisation based on • Key information needs & indicators, • data sets & reporting structures B) South Africa: Integrated model- Shared information Between and within health structures - Focus on information for action - Continuous training

7. / HISP Botswana: 2005 onwards …. • National Health Information System dysfunctional – 2 years backlog of poor quality data; • “Rich” health programs develop their own systems (HIV/AIDS, Infectious disease reporting, vaccination etc.) • “Poor” programmes have “nothing”, e.g. Mother & Child • Fragmentation; no coordination and overview of key data and indicators ADDRESSING THESE PROBLEMS: • Integration: data warehouse (DHIS) at district & national levels: Starting integration at district level –All data reported through the districts

8. / HISP Botswana: Pre-intervention – Fragmentation – No shared IST resources “converging” at district level - Fragmentation at central level IDSR – Notifiable Diseases EPI Home Based Care ARV Health Statistics PMTCT STD Nutrition Nutrition Family Planning MCH HIV/AIDS School Health TB Mental Health And more … District - DHT Facility 1 Facility 2 Facility 3 Facility n

9. / HISP Botswana:integration at District & National levels learning from South Africa IDSR – Notifiable Diseases EPI Home Based Care ARV Health Statistics PMTCT STD Nutrition Nutrition Family Planning MCH HIV/AIDS School Health TB National HMIS Stat. unit Mental Health And more … District HMIS Facility 1 Facility 2 Facility 3 Facility n But: Adding “data-warehouse” to the model from South Africa

10. Introduction to (Health) Information Systems (1) • What is Information Systems? • Wide understanding: from cell-phones to card based filing systems in a library - or in a clinic - AND the SOCIAL ORGANISATION OF IT! • Information and Communication Technology - ICT; OR just IT (Information Technology) - An even wider definition • Technology is rooted in people (knowledge) not things= organisation, knowledge, learning, innovation - as well as artefacts • Information Systems are best understood as social systems • a web of social and technical elements • nothing in a technological system is poorly technical (non-human) • the information system is part of the social context • information systems in a clinic (registers, forms, reports, information handling, meetings) may be seen as a human activity system

11. Introduction to (Health) Information Systems (2) • Large Information systems / and IT / ICT may be seen as information infrastructure • Infrastructure has a wider meaning: the technical grid (roads, wires, hospitals, cold chain/EPI, etc.) as well as the institutions, support systems, organisations, schools, training etc. necessary to run and maintain it. • Information systems make up a web of more or less interacting information systems - more or less integrated through standards / lack of standards • Web - network metaphor • Develop over time - makes changes difficult • Health Information Systems = Health Information Infrastructure

12. Introduction to (Health) Information Systems (3) • The ‘installed base’- what is already there - the point of departure • Information Infrastructure develop and grow over time • As the installed base grow it becomes increasingly difficult to implement changes • Always something there beforehand - never possible to start from scratch • Information Systems = Social Systems => • Information infrastructure “=“web of social systems • Installed base: social-technical web /existing information infrastructure

13. Introduction to (Health) Information Systems (4) Information systems as Social Systems: Consequences for system development & design??? • Focus on people and not technical artefacts - design and development need to be based on the social system • Participation in design and development • Local ownership and commitment need to evolve • Leadership to the users!! (Politics?) • The existing social system - the people already there, their skill, capacity and motivation - will form the basis for development • HUMAN RESOURCE DEVELOPMENT - Training and support!!!

14. Introduction to (Health) Information Systems (5) • Information systems as Information Infrastructure Consequences for system development & design??? • Everything is part of something bigger - or rely upon something else • Development needs to involve ‘negotiations’ with many other systems • Standards and interfaces with other systems (e.g. different health programs) • A more comprehensive approach is needed:development of health information infrastructure relies upon the wider infrastructureThe wider network of training and support of hardware, software and ‘humanware’ needs to be developed together with the health information infrastructure

15. Introduction to (Health) Information Systems (6) • The ‘installed base’ - brings together social systems and infrastructure in an unruly mess Consequence for change-planning - system development & change??? i.e. Health sector reform? • Changes tend to be incremental and piecemeal • When planning for change - a lot of historical commitments (ways things have always been done) will stand in the way • A web of ‘social systems’ represent obstacles to change

16. Introduction to (Health) Information Systems (7) Health Information Infrastructure reflection & mapping of the health sector - institutions, services, health programs • Hospital information systems • Patient based registers, paper / computer based based / electronic patient journals • Drugs /pharmacy • Transport • Finance • Laboratories • Tuberculosis • Extended Programme on Immunisation (EPI) • Sexually Transmitted Diseases • ‘Surveillance’ Notifiable diseases - rapid response • Death / Birth registers • Human resources • Primary Health Care Information Systems • Environmental health/ water / sanitation • Epidemiological information systems • School health • Personnel /salary • etc. etc. etc. etc. etc. • Patient billing • health insurance • tele-medicine • etc. etc.

17. Introduction to (Health) Information Systems (8) Health Information Infrastructure flow of informationreflection & mapping of the health sector - institutions, services, health programs Vertical - centralist - top-down -structure National level Provincial level District level Facility level National Health Information System (SIS) TB STD Mother EPI Rural Nutrition Notifiable Drugs Transport & Child Hospitals diseases

18. Introduction to (Health) Information Systems (9) Health data: the health facility is the entry point for all data! - Quality of data at the facility level crucial for all information at all levels - garbage at the facility level - garbage everywhere!! • Events (patient - facility) counted and registered daily - when happening • registers (e.g. per health program), books, files, forms • green (deliveries), red (children), yellow (adults) etc. beans put in a bottle • tally sheets with pictures • tally sheets with text • computers - patient record system • Aggregating data and reporting upwards every month (typically) at the facility • data reporting forms • huge amount of forms - one for each health program, or • Minimum Dataset based forms (e.g. South Africa) • Keeping/organising the data at the facility • Paper: in a file organised or disorganised • computer - spreadsheet - or database

19. The role of information and “problems” with the action led approach 1. How is it possible to solve problems outside the scope of health management? 2. May information make an difference? Influencing Decision making with different information approaches 3 Decision making outside routine & formalised areas will often rely upon mobilising support from a wider range of actors Problem area - “Health for all” & Primary Health Care provision e.g malnutrition & infant mortality Scope of (political) action by Community + other actors scope of action for health management Comprehensive approach action-led approach

20. 1. The “action-led” approach Developed by a collaborative research project in Kisarawe in Tanzania Ministy of Health, African Medical Research Foundation, Liverpool School of tropical Medicine, Superior institute of health, Rome. Ministry of Health, Tanzania (1991); Sandiford et al. (92, 94) Influential within “health information” - much cited A. Define the scope of decision-making by level of management B. Provide information C. Act! Focus : who are the users and specific information needs Information must be analysed and used at the level it is generated If action is the aim: It is as important to know how a decision may be made - how to use the information - as to know what decision should be made

21. Increasing Maternal Mortality at peripheral levels in Mongolia - following the economic crisis & break down of Soviet Union • Problem: • rest-houses used 2-4 weeks prior to delivery were closed • lack of equipment in district hospitals • poor ambulance service /lack of petrol • Solution: • Opening up rest housesEquipment & training in its use • improve ambulance services Actors and factors: National health management, WHO, INFORMATION international donors (money), district hospitals & equipment & skill & training Petrol ( - > general economic crisis) Bssically within the (international) health system - apart from petrol

22. Uneven distribution of nurses in 6 clinics in Mitchell’s Plain • Solution: move nurses between clinics • Actors involved • (or to be “enrolled”) • in efforts to rectify the problem: • health management • nurses • unions • information • All within the scope of the • health services ?

23. Nutritional status among children in Khayelitsha in relation to housing and services as water and toilets - Housing & level of services have impact on health SOLUTION: Build houses & develop general infrastructure “Problem”: the health sector is not building houses & toilets - not action-led information? Scope of action - & actors - needs to be extended Actors:Health sector, Community groups, Non Governmental Organisations Environmental & sanitation & water sectors, local government (ANC), provincial government. INFORMATION., etc.

24. Information as ‘information’ - the rational of the information system • Feldman and March (1981) provide four useful explanations for the often observed “over-consumption” and lack of use of information: • Organisations provide incentives for gathering extra information. These incentives are buried in conventional rules for organising, as the division of labour between information gathering and information using. • Much of the information in organisation is gathered and treated in surveillance mode rather than decision mode: the focus is on negative trends, which trigger action. • Much of the information in organisations is subject to strategic misrepresentation. • Information use symbolises a commitment to rational choice.

25. Information as ‘institutional glue’- a consequence (but not purpose) of information systems • Information as trust, relationship and (social) structure • The structures and ideology instituted by the information systems make up considerable obstacles to change • The processes and structures being institutionalised - or structurated - by the information systems often seem to be their most important property and outcome • As a concequence: • using information system as a tool for ‘structurating’ new structures - e.g. the new health district Let the changed/ transformed information system produce - and through routine activities re-produce the new organisational structures