World Civil Society Forum: Health and the Internet

1. World Civil Society Forum:Health and the Internet World Health Organization July 2002

2. Joan Dzenowagis, PhD • Project Manager, Health InterNetwork • Shyama Kuruvilla, MS • Scientist, Research Policy and Cooperation • World Health Organization • Geneva World Health Organization July 2002

3. Health and the Internet: Today’s focus • Challenges • Access to ICT • Quality of health information • Information environments • Opportunities • Policy for quality • Partnerships and resources • Knowledge and best practices World Health Organization July 2002

4. Challenges: Access to ICT • Brief overview of what we already know: • Growing but uneven use of internet worldwide • Uneven access to new technologies widening existing inequities and creating new gaps e.g. the digital divide • Blurring of legal and geographic boundaries • Socio-political infrastructure... has not kept pace with growth World Health Organization July 2002

5. Number of internet users • World average 1 user per 15 persons • North America and Europe average 1 per 2-3 persons • Africa average now 1 user per 150 persons, excluding SA World Health Organization July 2002 Source: Mike Jensen, Africa Online 2002

6. Is the world on-line? Internet use estimates: http://Internet.nua.ie/surveys/how_many_online/index.html Population estimates: http://www.un.org World Health Organization July 2002

7. Problems with access • Cost of access is still a major factor • Limited telecom infrastructure • ISP regulation and monopolies • Irregular or no electricity • Wide variations caused by a range of factors: policy, market trends, consumer knowledge and behaviour etc. World Health Organization July 2002

8. “Our hospital has a library, but it is full of old book that published from the 1980s and the outcome is doctors disappointed about that information! There is a computer but no (CD-ROM), internet account or email address in that library.” Dr Nguyen Tan Hai Danang Hospital, Viet Nam World Health Organization July 2002

9. Challenges: Health information quality • Health information online • Search for “health” on search engine Google today yields nearly 60 million pages • Estimates of the number of health-related websites range from 10,000 to over 100,000 World Health Organization July 2002 Source: www.google.com

10. Sources of health information • Numerous and varied • Academic institutions • Biomedical publishers • Governments • Public and private health institutions • Health industry - drug companies, businesses • Individuals - citizens, professionals and patients • “Pseudo” health and wellness interests World Health Organization July 2002

11. Use of internet for health is rising 61% 75% 39% 25% World Health Organization July 2002 Source: Cyber Dialogue,Cybercitizen Health, 2000

12. Information quality • Surveys, studies and anecdotes • Dubious information quality • Widespread practice of fraud • Potentially dangerous claims and • The risk of exposure to harm World Health Organization July 2002 Source: California Healthcare Foundation, Rand 2001

13. Business approach Public health approach Content quality Based on perceived neutrality, expertise, and/or authority Based on known and consistent quality TRUST BRAND Consumer behavior Citizen behavior The need for quality World Health Organization July 2002

14. No real protection • To date there is no credible and enforceable protection of citizens from potential harm in a large number of websites offering health information today • Some degree of protection provided either by national regulatory mechanisms or through self-regulation, BUT modest at best and currently afforded only a small number of people World Health Organization July 2002

15. Challenges: information environments • Information may be global, but the use of information is always local. • Key issues across different contexts: • Felt needs • Strategic needs • Unique information environments World Health Organization July 2002

16. Understanding needs for health information online World Health Organization July 2002

17. Seeking health information online • Event-driven, e.g. illness? • Curiosity? • Anonymity? • Autonomy? • Lack of other sources? • ……? World Health Organization July 2002

18. The health internet environment • Changing relationships and patterns of communication • Uncertainties about the use and impact of information on different groups • Information quality: potential for harm? • Role of regulations and standards • Need for public education and engagement World Health Organization July 2002

19. Internet traffic flows Source: Stephen G. Eick, Bell Laboratories; Cybergeography World Health Organization July 2002

20. Opportunities • Strengthen policy structures to enhance health information quality, e.g. dot.health • Build partnerships and mobilize resources to facilitate equitable access to ICT for health, e.g. Health InterNetwork Initiative • Develop and share knowledge and best practices. World Health Organization July 2002

21. Opportunities: Health information quality Stakeholders • International agencies • Governments & public institutions • Nongovernmental organizations • Health practitioners and associations • Private sector, e.g pharma companies • Citizens and consumer associations • Academia World Health Organization July 2002

22. Response: Codes of conduct • Numerous organizations trying to address quality of health information • All of these codes have their primary goal of citizen protection • Secondary goal of protecting the company’s good name: competition based on quality • Derive from different philosophies and apply different approaches and processes • Driven by market forces and demand World Health Organization July 2002

23. WHO’s position • Health information quality is too important to be left to market forces alone. • WHO’s response: • Prevention of harm is laudable and viable through the creation of a new top-level domain, .health World Health Organization July 2002

24. Internet top-level domains • Domain name system • Introduced in 1980s to handle growing Internet • Administered by ICANN, private sector non-profit corporation in USA • Organizes Internet by name (previously by number) • Uses hierarchical structure: names separated by dots • Top-level domain follows last dot: .com, .edu, .int • Each top-level domain managed by single organization World Health Organization July 2002

25. .health: A new top-level domain • Aims: • Establish an easily-recognized label for trustworthy health information • Coordinate and harmonize efforts to improve health information on the Internet • International quality and ethical standards • NOT an attempt at regulation • Addresses key shortcoming of self-regulation in that it is enforceable: domain name can be suspended or cancelled for non-compliance. World Health Organization July 2002

26. Opportunities: Build partnerships and mobilize resourcesThe Health InterNetwork Initiative • United Nations Millennium Action Plan • September 2000, HIN one of four United Nations development initiatives • Two themes • Use ICT in the service of public health • Encourage building of partnerships (public and private sector) World Health Organization July 2002

27. UN Mandate “..As a concrete demonstration of how we can build bridges over digital divides, I am pleased to announce the Health InterNetwork. ...This network will establish sites in hospitals, clinics and public health facilities throughout the developing world to provide tailored access to relevant up-to-date health and medical information... ...Internet access will be provided in cooperation with foundation and corporate partners....Training and capacity-building is an integral part of the project. ...The World Health Organization is leading the United Nations in developing this initiative with external partners.” UN Secretary-General Kofi Annan Millennium Report of the UN Secretary-General September 2000 World Health Organization July 2002

28. The World Health Organization • Specialized United Nations agency with a charter for international health • Worldwide representation: 191 member states, 130 of these are developing nations • 50 years’ experience in public health • Ability to draw on a well-established, international process for bringing together countries and actors at every level. World Health Organization July 2002

29. Aim • Support existing public health programmes and priorities through: • Content: relevant, high quality, affordable • Connectivity: improving internet access • Capacity: training to use health information effectively World Health Organization July 2002

30. Public health focus • Health service providers • Researchers and scientists • Policy makers World Health Organization July 2002

31. Partners • UN agencies • Governments • Nongovernmental organizations • Foundations • Private sector • Collaborating institutions, universities and health centres World Health Organization July 2002

32. Principles • Consistent with UN framework • Inclusiveness: local, national and international partners; public and private • Partner orientation non-profit, non-commercial • High standards for quality and ethics • Equity and affordability World Health Organization July 2002

33. Phases • Three phases over 7+ years • planning and development • demonstration projects and evaluation • expansion to broader scale World Health Organization July 2002

34. Working structure Steering committee WHO task force Advisory groups Project teams Implementation partners World Health Organization July 2002

35. Milestones • HIN concept developed; portal launched • Demonstration projects: India, Eastern Caribbean, Bolivia, Research Network… • WHO role in ICT for health: UN ICT Task Force, G-8, World Summit on Information Society… • Global content and technology consultations • Major breakthrough on access to research: HIN Access to Research Initiative (HINARI) World Health Organization July 2002

36. HINARI: An example of equitable access • Content • Over 2000 journals from 22 publishers • Journals in full text, directly from publishers’ websites • Subject scope: biomedical and related social sciences • No restrictions: current issues and back years included World Health Organization July 2002

37. HINARI: Training and support • Training • English language training modules • First training-for-trainers workshop: focus on malaria research in Africa - June 2002 • ICT support • No resources currently available; potential for ICT support volunteers World Health Organization July 2002

38. Who is eligible? • Countries • Two tiers: according to ability to pay (country GNP), Berne signatories (waived for poorest countires) • Institutions • Schools of medicine, nursing, public health, pharmacy; universities; research institutes; government offices; teaching hospitals; medical libraries • NGOs accepted as “walk-in” users World Health Organization July 2002

39. World Health Organization July 2002

40. “Today we cannot find the words to express our satisfaction by receiving free access to 1500 biomedical journals online. The reason is simple. More than 10 years ago, we do not receive budget to acquire journals. And a few minutes ago we become too rich by becoming part of HINARI. What a Wonderful surprise for the whole Institution. Thank you, best wishes and long Life to HINARI.” Elisabeth Andong University of Yaounde I; Cameroon World Health Organization July 2002

41. HINARI Plans • Integrate locally-produced information • Include other information formats (books, databases) • Expand training efforts including French and Spanish modules • ICT support to institutions • Solutions for countries not included in the publishers’ offer World Health Organization July 2002

42. HIN Demonstration projects: HIN India • Priority public health programs: • Revised national tuberculosis control program • National tobacco control program • Public health community: • Primary and community health centers in 2 districts • District, state and central health departments • Medical colleges and collaborating institutions • Relevant research institutions World Health Organization July 2002

43. Opportunities: Building and sharing knowledge and best practice • . • Goal: • Understand the relevance of different types of information and the internet to the objectives and needs of organization as a basis for planning how to use the internet. • If the Internet is the solution, what is the problem? World Health Organization July 2002

44. Assessing needs • Needs assessments: • Organization and end-user information and communication needs (e.g. HIN) • Local content inventory • E-readiness and connectivity - hardware, telecom, logistics - (e.g Harvard-MIT) • Information environment and workflows - research, policy, practice, public engagement World Health Organization July 2002

45. Internet Action Plan • Action planning tells how you will reach your goals • Start with your objectives • List the basic elements to achieve them • Determine what it will cost, the timeline, who will do it… • Recognize that the plan can change if circumstances change World Health Organization July 2002

46. Evaluation • Were the strategic objectives of the action plan met (goals and indicators of progress defined) ? • Were the identified information needs met? • Was there adequate planning, training, and resource allocation to meet the objectives? World Health Organization July 2002

47. Focus on evaluation • Build evaluation into action plan, program development, and workflow • Prioritize and evaluate what is useful for action (try and avoid ‘so what?’ data collection) • Use regular evaluation to assess return on investment and monitor progress • One of the main problems in health and development work is the lack of standardized assessment that hinders learning across time and contexts. World Health Organization July 2002

48. Civil Society Organizations: Participation I • Set up projects using ICT to support health • Encourage HINARI sign up www.healthinternetwork.net • Equip institutions for internet access HIN e-readiness assessments; budget • Offer or organize training workshops HIN training packages World Health Organization July 2002

49. Civil Society Organizations: Participation II • Include a communications/capacity building aspect in grant applications • Building up the knowledge in the field: conduct needs assessments, contribute to “evidence” and knowledge development • Find out about free resources, and make sure your constituencies know about them and how to use them World Health Organization July 2002

50. Civil Society Organizations: Participation III • Promote national ICT strategies and capacity building: • Awareness raising of decision-makers • Advocate for equitable access • Regional centers of excellence • National internet training centers • Standards for user training • Improved ICT training at schools, universities, research networks, workplace World Health Organization July 2002