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Hilda Bastian - Selling Sickness 2010

Hilda Bastian - Selling Sickness 2010






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    Hilda Bastian - Selling Sickness 2010 Hilda Bastian - Selling Sickness 2010 Presentation Transcript

    • Independent patient information
      Selling Sickness: Influence on influence - Amsterdam, 8 October 2010
      Hilda Bastian, IQWiG, Germany
    • German healthcare reform of 2003
      „In addition, as part of the Institute‘s mandate, it is to prepare information about the current status of scientific knowledge, so that citizens can benefit directly from its work.“
      The goal: „to strengthen citizens‘ autonomy.“
    • IQWiG: German Institute for Quality and Efficiency in Health Care
      Began work in October 2004
      Legislative mandate: All of IQWiG's work is to be based on the principles and methods of evidence-based medicine
      Remit: Effectiveness evaluations and patient information
      Can be commissioned by:
    • Ensuring scientific independence
      IQWiG: Governance – the foundation and board
      Non-government, non-profit foundation established by legislation
      Board of governors include the Secretary of State for Health and representatives of the health care system self-governors (the statutory health insurance funds and service providers – hospitals and doctors)
      Funding through a levy on healthcare transactions
    • Ensuring stakeholder input
      IQWiG: Governance – the Board of Trustees
      Providers: medical and professional associations, hospitals
      Patients: Representatives of patient organisations, Federal Commissioner for Patients' Concerns
      Community: employers, churches
      Pharmaceutical industry
    • The long slow birth of the „Gesundfuchs“
      Oct 2004: IQWiG
      2005: Concept – but few resources
      Feb 2006: Minister launches the website
      Dec 2006: Evidence-based encyclopaedia proposal
      2007: Legislation expands IQWiG‘s mandate
      July 2007: „Proof of concept“ approved
      2008: Green light - a team of 14 inside
    • Specialist expertise (plus IQWiG statistics department):
      Evidence assessment
      Qualitative research
      External expertise
    • „Patient HTA“
      Evidence scanning and assessment
      Assessing qualitative research
      International, bi-lingual peer review
      Stakeholder consultation on all drafts
      User-testing (focus groups)
      Post-publication criticism / correction system
      Kept up-to-date
    • Evidence-based patient information
      Developed using systematic methods to minimise bias and maintain neutrality
      Uncertainties addressed, as well as potential benefits and harms
      Kept up-to-date so that it remains evidence-based
      It‘s non-directive
      Uses evidence to try to achieve its aims (patients who are informed, psychologically supported and empowered to achieve their goals)
    • 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
    • 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.
    • Determine scope
      and key messages
      (quantitative and qualitative)
      (possibly interviews
      and online survey)
      Evidence scanning &
      Development of products;
      Translation & translation QA
      Production Cycle &
      Quality Assurance
      User monitoring &
      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
    • Two pathways for topic choice:
      Topic driven
      • Evidence driven
    • Bastian H, Glasziou P, Chalmers I. Seventy-five trials and eleven systematic reviews a day: how will we ever keep up? PLoS Medicine 2010; 7(9): e1000326.
    • Building an up-to-date evidence-based encyclopedia:
      Currently around 350 articles: aiming for 1,000 (plus a new form of medicines databank)
    • Evaluation
      Before and after publication
      Internal and external: qualitative and measurement (readability, usage etc)
      Methods and process evaluated by the WHO Regional Office for Europe
    • Trust and our readers
      They just say openly, „We don‘t know the answer.“ That is what I meant when I said, it‘s honest. That‘s just the way it is. Yet you hardly ever read that – it doesn‘t matter what kind of information, you know – that is usually completely missing.
      (Are they believable?) I‘d say that, yes, for sure. I judge them to be very believable because of all those sources. You wouldn‘t just make up that many numbers.
    • As neutral and non-manipulative as humanly possible
      Directive patient information is not particularly effective and it is paternalistic
      A high level of expertise is needed to avoid and identify „spin“
      „Spin can be defined as specific reporting that could distort the interpretation of results and mislead readers…(I)t can result from ignorance of the scientific issue, unconscious bias, or willful intent to deceive.“ Boutron (2010). JAMA; 303:2058-2064.
    • We occupy an uncomfortable position
      TRAITOR !
    • Competing for attention
    • Breaking out – of the niche and past the border
    • The future for evidence-based patient information
    • It‘s not easy, but it‘s not „MISSION: IMPOSSIBLE“
    • Conclusions:
      A core set of independent public patient information that could be widely translated / adapted is achievable and it is affordable
      But it needs support to thrive and become the most used information
      Good quality translation that preserves accuracy and quality of communication is essential – spin can be introduced during translation
      Patient information should not be medicines-driven, but driven by what patients want to know
    • Conclusions:
      We need better access to very basic product information in Europe – but its role can and should be tightly restricted
      We need a clear and simple mechanism for an authority such as IQWiG to correct errors and „spin“ in product information
      The regulators and the „new“ authorities need to create organisational and informational bridges, so that basic information about appropriate medicine use is linked to up-to-date evidence
    • Vielen Dank!www.informedhealthonline.org