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Combatting malnutrition: The patient’s response

This article discusses the importance of addressing malnutrition from a patient's perspective and the need for patient involvement in health policy and research. It highlights the role of the International Genetic Alliance (IGA) and the European Nutrition for Health Alliance (ENHA) in advocating for better nutrition for patients. The article also emphasizes the need for a "pull" approach, where patients actively participate in the development of policies and products related to nutrition.

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Combatting malnutrition: The patient’s response

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  1. Combatting malnutrition:The patient’s response dr. Cees Smit Brussels, November 8, 2011

  2. Mission EGAN / IGA • Tocreate a patient’svoice in health policy issues and health research • In a world in whichgenetic, multifactorialandcongenitalconditions are diagnosed in it’searly stages of development, understood, effectivelytreated, prevented (often rare) • Andthat the peopleinvolved are adequatelysupported

  3. Coverage of EGAN/IGA • Only umbrella groups addressing nutrition • The International Genetic Alliance represents 7 regional and continental patient alliancesfrom Eastern & Western Europe (EGAN), Asian Pacific, China, India, Australia, New Zealand, Southern Africa, Middle East, Latin America and North America. • In total around 2,800 patient organisations

  4. Further reading 2004 2004

  5. Nutrition Summit BioVision, Lyon March, 2011 FENS, Madrid October, 2011

  6. Declaration sent to 80 Ministers for Health worldwide on 28 March 2011 • We strongly believe that public private partnerships are the most effective vehicle to deliver improvements in micronutrient intakes and health, and we remain committed to promoting the best nutritional solutions to meet the needs of patients and other people with impaired health, other citizens and society • + policy recommendations (see Newsletter on USB stick). • Follow up with a Global Nutrition & Health Forum (Madrid)

  7. Preparing for Life (1) • a joint venture of patients, science and services working with other partners to meet the UN- millennium development goals: • - reduce child mortality and morbidity • improve maternal and child health

  8. Preparing for Life (2) • The international expert meeting – in association with ErasmusMC – in Geneva (February 2&3, 2012) • Decision making meeting with WHO in Geneva (February 6&7, 2012)

  9. Relevance of nutrition for patients • The relevance of ‘nutrition’ for patient groups can differ significantly. • Its importance is strongly dependent on the role nutrition or nutritional aspects can play in the prevention, treatment and management of the disease or disability • Affected families are looking for information • Society interested in health and ageing

  10. Identified subgroups • Specific diseases (coeliac, anemia, diabetes, Crohn & Colitis, COPD, etc.) • Perinatal, maternal and elderly (nutrition following the life cycle) • Malnutrition and nutritional supplements (hiv/aids, cancer, pre- and post operational) • Nutritional aspects of metabolic diseases • Nutrition and prevention (life style) • Global world issues (malnutrition, iodine)

  11. Focus on malnutrition • European Nutrition for Health Alliance (ENHA) addresses malnutrition (www.european-nutrition.org) • Affecting around 20 million citizens and costing EU governments up to 120 billion/yr. • (Ref.: Ljungquist et al., Clin Nutr 2010; 29) • ENHA’s advises routine nutritional screening & follow-up on malnutrition in community care, nursing homes & hospitals • Joint conference with patients early 2012

  12. ‘Push’ and ‘Pull’ aspects (1) • It is essential that specific patient groups with nutritional problems actively participate in the development of policies and products • So far, it’s a ‘push’ approach • A ‘pull’ approach is recommended • The ‘pull’ approach can be triggered by stories from ‘expert patients’ in areas where nutrition plays an important role (like in celiac disease)

  13. ‘Push’ Model

  14. ‘Pull’ Model

  15. Patient participation • The combination of ‘evidence-based’ scientific knowledge with the ‘practice-based’ knowledge of patient groups leads to an ‘added’ value. • There are a number of promising examples of this added value from patient groups in the drug development process (new concepts, new products, long-term financing biobanks), • That could bring the nutrition issue forward

  16. Conclusions • Most patientgroups have nutritionalneeds • EGAN/IGA are natural partners for a ‘pull’ approach in (mal)nutrition issues and health care policymaking • EGAN/IGA fully supports this conference • Action: a roundtablewith expert patients to address the (mal)nutrition and health issue at large, early 2012

  17. For more information • Chantal Gill’ard, executive director EGAN/IGA cdmgillard@hotmail.com • Cees Smit, policy advisor EGAN/IGA smit.visch@wolmail.nl

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