1 HIFA2015: A virtual community of purpose Dr Neil Pakenham-Walsh Coordinator, HIFA2015 and Chair, Dgroups Foundation Healthcare Information Network

2 People are dying for lack of knowledge: "Of the approximately 50 million people who were dying each year in the late 1980s, two-thirds (66%) could have been saved through the application of health knowledge" James Grant, UNICEF, 1993

3 Studies in low-income countries… “suggest a gross lack of knowledge about the basics of how to diagnose and manage common diseases, going right across the health workforce and often associated with suboptimal, ineffective and dangerous health care practices.” Pakenham-Walsh N & Bukachi F. Information needs of health care workers in developing countries: aliterature review with a focus on Africa. Human Resources for Health 2009, 7:30

4 The HIFA Vision: “ A world where every citizen and every health worker has access to the information they need to protect their own health and the health of others” “HIFA2015 is an ambitious goal but it can be achieved if all stakeholders work together.” T. Pang, Director of Research Cooperation, WHO, 2006

5 Global Healthcare Knowledge System All stakeholders are interdependent All stakeholders are part of the Global Healthcare Knowledge System…

6 All Stakeholders are part of the Global Healthcare Knowledge System: Adapted from Fiona Godlee, Neil Pakenham-Walsh et al. Can we achieve health information for all by 2015? The Lancet, 2004; 364:

7 All Stakeholders are part of the Global Healthcare Knowledge System Adapted from Fiona Godlee, Neil Pakenham-Walsh et al. Can we achieve health information for all by 2015? The Lancet, 2004; 364:

8 Global Healthcare Knowledge System

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10 Global Healthcare Knowledge System

11 Global Healthcare Knowledge System

12 Global Healthcare Knowledge System

13 Global Healthcare Knowledge System

14 Global Healthcare Knowledge System The Knowledge System isn’t working, because there is: 1.Poor communication among stakeholders (frontline healthcare providers, researchers, publishers, systematic reviewers, producers of reference and learning materials, librarians, information professionals) 2.Poor understanding of the drivers and barriers within the system 3.Poor advocacy to persuade governments and funding agencies to invest in publishing and information services HIFA addresses all 3 systemic weaknesses. How?...

15 How will we achieve the HIFA vision? Ref: Advocacy Understanding Communication

16 How will we achieve the HIFA vision? Ref: Advocacy Understanding Communication

17 HIFA2015 Membership ( ) 6,300

18 6,000 members; 2,000 organisations; 167 countries Health professionals – Librarians – Information Professionals – Publishers – Researchers – Policymakers

19 How will we achieve the HIFA vision? Ref: Advocacy Understanding Communication

20 HIFA Voices HIFA Voices is an innovative database with two types of content: 1.HIFA Quotations are short, verbatim extracts (<100 words) from HIFA messages, carefully selected according to pre-defined criteria. 2.HIFA Citations are bibliographic references to the health librarianship and information science literature, with a focus on the 57 countries (mostly in Africa) that are recognised to be in HRH crisis 3. The HIFA Voices database will drill “up” to major, conventional databases (eg HRH Global Resource Center), and “down” to the full text of the source message and discussion thread.

21 HIFA Voices: Proof of Concept Used by WHO to inform WHO Recommendations… “As [HIFA Voices] evolves over the coming years, it has the potential to become a leading source of practical and experiential data to help inform future international guidelines by WHO and other organisations.“ Dr Simon Lewin, WHO Guideline Development Group

22 HIFA Advocacy White Paper: Access to Health Information Under International Human Rights Law (2012) Governments have a legal obligation under international human rights law to ensure that citizens and health workers have access to the information they need to protect their own health and the health of others.

23 HIFA2015 Advocacy: Country Representatives Africa Burundi Cameroon DR Congo Ethiopia (2) Ghana (2) Kenya (2) Mali Malawi Mauritius Mozambique Namibia Nigeria (8) Rwanda (2) Somalia South Africa Tanzania Uganda (3) Zambia Zimbabwe Rest of World Malaysia Bangladesh Canada (2) China Denmark Egypt India (14) Ireland Italy Kosovo Macedonia Malaysia Nepal Oman Pakistan (9) Philippines (3) United Arab Emirates USA West Bank/Gaza

24 HIFA Advocacy: Example ICDDR,Bangladesh: “We are going to lose free access to HINARI journals in Bangladesh!!” Outcry from HIFA members Articles in BMJ and Lancet Reinstatement of free access

25 HIFA2015 is a Dgroup There are more than 2000 Dgroups, all supporting knowledge sharing for health and development = Accessible = Inclusive Dgroups Foundation

–2009–2010–2011– 2006– How do we engage non-English speakers? 5 Dgroups in 3 different languages, in collaboration with WHO and others Parallel forums Bilingual moderators

27 How are we funded? Income = $30,000 p.a. 1 fulltime staff 120 volunteers

28 How do we evaluate what we do? Formative evaluation vs Impact evaluation Major External Evaluation (2011): “HIFA2015 achieves an extraordinary level of activity on minimal resources from which many people around the world benefit” evaluation/

29 Further reading Godlee F, Pakenham-Walsh N, Ncayiyana D, Cohen B, Packer A. Can we achieve health information for all by 2015? Lancet 2004;364(9430): Pakenham-Walsh N. Healthcare Information for All by 2015: a community of purpose facilitated by Reader-Focused Moderation. Knowledge Management for Development Journal, Vol 3, No 1 (2007) Pakenham-Walsh N & Bukachi F. Information needs of health care workers in developing countries: a literature review with a focus on Africa. Human Resources for Health 2009, 7:30doi: / Pakenham-Walsh N. Towards a Collective Understanding of the Information Needs of Health Care Providers in Low-Income Countries, and How to Meet Them. Journal of Health Communication, Volume 17, Supplement 2, 2012 DOI: / (Open Access)

30 How you can be involved 1. Join HIFA2015 forum: hifa2015.org 2. Become a HIFA Country Representative 3. Use HIFA as a basis for your dissertation Thank you