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IEEPO 2021 Position Paper

About

Humanising‌ ‌Healthcare:‌ ‌a‌ ‌call‌ ‌for‌ ‌ transformational‌ ‌change‌

About the IEEPO Position Paper

This IEEPO Position Paper is based on global community demand and call to action to empower change and transformation of healthcare systems. It explores the learnings and recommendations from various sources of information and is informed by the input of:

  • The work of all four domains of IEEPO under the leadership of the External Advisory Committee and the IEEPO programme chair
  • A global patient community survey developed and conducted by IEEPO in August and September 2021
  • Findings and outcomes of the IEEPO virtual conferences in 2020 and 2021
  • Desk research covering the latest information and publications on the state of healthcare around the world and the need for transformation and humanisation
  • Interviews conducted with contributors of the MAKE domain and other domains of engagement of IEEPO.

The Paper contains an analysis of certain areas that the IEEPO community and the contributors see as pressing and in need for change. Most importantly, the Position Paper contains specific calls to action that sit within each chapter:

1. Putting people at the heart of healthcare

2. Humanising health literacy

3. Humanising digital healthcare to build capacity by harnessing the power of patient data

4. Humanising healthcare to focus on prevention and cure with a new 50:50 model

5. Prioritising diversity, equity and inclusion to humanise approaches to healthcare.

 

About the IEEPO Community Survey

This IEEPO Position Paper elaborates on the findings and outcomes of a global patient survey conducted by IEEPO in 2021. Results and a breakdown of participants from the community survey include:

Geographical breakdown:

Graph showing results of survey question: To what extent do you agree with this statement: ‘Universal health coverage (UHC) should be the goal when governments are investing in health, to provide health services people need without financial hardship’?
Graph showing results of survey question: To what extent do you agree with this statement: ‘Universal health coverage (UHC) should be the goal when governments are investing in health, to provide health services people need without financial hardship’?

Acknowledgments:

The following persons and organisations contributed to the conduct of the research and the development of this paper:

The IEEPO community who responded to the Community Survey

IEEPO External Advisory Committee members:

  • Alastair Kent, Former Executive Director, Genetic Alliance 
  • Bastian Hauck, Founder, #dedoc˚ Diabetes Online Community
  • Durhane Wong-Rieger, President & CEO, Canadian Organization for Rare Disorders 
  • Elisabeth Kasilingam, Managing Director, European Multiple Sclerosis Platform 
  • Ivica Belina, President, Koalicija udruga u zdravstvu 
  • Kawaldip Sehmi, CEO, International Alliance of Patients' Organizations 
  • Kin Ping Tsang, President, Rare Diseases Hong Kong
  • Maira Caleffi, Founder and President, FEMAMA and IMAMA
  • Mary Baker, Former President, European Brain Council
  • Mayra Galindo Leal, Director General, Mexican Association of the Fight Against Cancer
  • Nicola Bedlington, Former Secretary-General, European Patients’ Forum
  • Nicole Boice, Co-Founder, RARE-X Founder, Global Genes
  • Ranjit Kaur, President, Breast Cancer Welfare Association Malaysia
  • Raquel Peck, Chair, IEEPO 2021 program, former CEO, World Hepatitis Alliance & Founder, CLARION I 
  • Susan Thornton, Chair, Lymphoma Coalition
  • Ina Meyer, Global Patient Partnership, Roche  
  • Susanne Brandl, Global Patient Partnership, Roche  
  • Sebastien Ducarme, Global Patient Partnership, Roche  
  • Emilie Prazakova, Global Patient Partnership, Roche  
  • Caroline Averius, Global Patient Partnership, Roche  
  • Sanja Njegic, Global Patient Partnership, Roche
  • Michael Oberreiter, Head of Global Access at Roche
  • André Trottier, Health Policy Leader at Roche Diagnostics
  • Hill and Knowlton Strategies, London
  • Editor and copy: Tamás Bereczky, Patvocates