Promoting health & scientific literacy through patient information: the role of IQWiG

1. Promoting health & scientific literacy through patient information: the role of IQWiG MICC 2008, Zagreb 19. June 2008 Hilda Bastian Institute for Quality and Efficiency in Health Care, Cologne, Germany

3. IQWiG: German Institute for Quality and Efficiency in Health Care • Established with an independent structure and public funding by legislation as part of the German health care reform • Began work in October 2004 • All of IQWiG's work is to be based on the principles and methods of evidence-based medicine • Effectiveness evaluations and patient information commissioned by:

4. Independent production of patient information: • To strengthen patients‘ autonomous decision making • Promote more evidence-based medicine • Keep the public up-to-date on important evidence

6. Improve health and scientific literacy • WHO definition: “Health literacy represents the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. Health literacy means more than being able to read pamphlets and successfully make appointments. By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment.”

8. Empowering, patient-centred communication: • Addresses what patients want to know • Shows interest and respect for what patients think • Respects patients‘ competence Dixon-Woods. Writing wrongs? An analysis of Published discourses about the use of patient Information leaflets. Soc Sci Med 2001;52:1417-1432. Kettunen et al. Developing empowering health Counseling measurement: preliminary results. Patient Educ Counsel 2006;64:159-166 Virtanen et al. Empowering discourse in patient Education. Patient Educ Counsel 2007;66:140-146

9. Different products, with different literacy levels and depth of information • Simple animations with sound • Fact sheets – suitable for use in clinical practice (2 – 5 pages) • Research summaries as „FAQs“: (1 – 2 pages) • Patients‘ stories, quizzes, newsletter • Detailed articles • Readability: all below university level

10. IQWiG approval of scope and key messages (Liaison with commissioner) Commission Research (possibly interviews and online survey) Evidence scanning & Updating Development of products; Translation & translation QA Production Cycle & Quality Assurance User monitoring & evaluation Content QA (both languages) and IQWiG approval Reader feedback Stakeholder consultation (core products): IQWiG bodies including GBA, Ministry, and Board of Trustees plus German test readers (independent of IQWiG) Final version, Internal QA and IQWiG approval Publication

15. People telling their stories • Angelika, 48 – the fear of bowel cancer (high risk) There were nights I lay awake for a long time and thought. There were some tears, too. I kept wondering if I was doing the right thing and how I could come to terms with the fear. It was damn hard. But those difficult times are a long time ago.

16. IQWiG‘s approach to improving critical/evidence literacy • Embedded in the information and stories • Quizzes, communicating about risk and tools to help people understand probabilistic information • Working with the „patient university“ from Hannover

17. Goal: Coverage of major topics by 2012 • 100 major modules, 300 fact sheets, a minimum of 700 research summaries, with an innovative updating model • Major modules are topic-driven: the rest is evidence-driven • 14 people in 2008 and 16 in 2009 • Plus external support and evaluation

18. Adoption and translation • Target multipliers – people who inform others • Website: about 2,000 visitors a day • June 2007 – NHS Choices • 2008 – first insurer prints a full-colour booklet (COPD) – first fact sheet planned for Turkish and Russian Language number 3 in planning – Haute Autorite de Sante

20. Vielen Dank!