Practical Perspectives Panel: A multi-stakeholder discussion

This session provided an opportunity for an exchange of experiences and understanding around how we optimise patient community and stakeholder engagements to drive equitable access for healthcare innovations. 

Nicola Bedlington, IEEPO Moderator and former Secretary General of European Patients’ Forum (EPF) from Austria introduced and moderated the session. 

KEY TAKEAWAYS

  • Building strong and collaborative multi-stakeholder partnerships is a priority for working with policymakers to drive holistic, inclusive and humanised healthcare. 

  • The early and equal involvement of the patient community is absolutely vital. It is important to have a truly integrated approach, working together to ensure that the patient voice is not only heard but forms an integral part of healthcare decision-making. 

  • Patients are a source of valuable insights and data – however, data ownership and data privacy are essential and patients need to be educated to understand their data is their property. If used wisely, data and digitalisation of health can help to promote diversity, equity and inclusion and reduce health inequalities.

Dr. Mariam Jashi, Global Board Member of the UNITE Parliamentarians’ Network for Global Health, Secretary General of the Medical Women’s International Association and Chair of the Advisory Board at Tbilisi Medical Academy in Georgia: “When we look at why we have seen success in communicable diseases, we can see that it was due to clear data driven decision-making between multiple stakeholders. In HIV, successful public private partnerships between researchers, academia and manufacturers helped to create solutions and drive down the costs of HIV medicines. All these different factors helped implement a truly integrated and patient centred approach.” 

Dr. Sawsan A. Al Madhi, Advocacy Advisor, CEO & Founder, AlignnEficient Health Consultancies from the United Arab Emirates:There is a need to change the narrative – we are not spending, we are investing in health. We need to show policymakers Investment showcases that prove how you can reduce future healthcare costs by investing today. We also need to ensure that patient organisations are on the same level as other decision makers. I think we need to add a new P for patients to public private partnerships!

Dr. Ahmad Morsy, Executive Director of the Higher Committee and National Programme of Women Health in Egypt from Egypt:The idea of focusing on the patient should be the future especially in policymaking. Digitalisation and use of patient data and accessibility can really help with this. What we need to remember is that it’s the use and curation of data that is important and this can be a challenge especially in developing countries. How data is shown is even more important than how it is collected.”

Konstantina Boumaki, Youth Group member of European Patients’ Forum (EPF) from Greece:Collaboration and multistakeholder cooperation is the number one priority. We need to focus on shared decision-making between patients and healthcare professionals. When we involve everyone in the discussion, the patient community, healthcare professionals, industry then we can make a decision that benefits everyone.”  

Ranjit Kaur, Consultant of Breast Cancer Welfare Association from Malaysia: “Times have changed. People need to be respected, included and to be active participants in managing their healthcare. They need to be well-informed, and it is essential that they are informed in their own language, to ensure they can understand. This is so important because we know well informed patients cope better and have better outcomes.” 

Maira Caleffi MD PhD, Breast Surgeon and Chief of Breast Center at Hospital Moinhos de Vento Porto Alegre, Volunteer President FEMAMA Brazil, UICC Board of Directors, Geneva from Brazil: “Data is a useful tool that can help us improve our healthcare systems. We need to prioritise the meaningful use of data to help us make the right decisions. The quality of the data we collect is key and collaboration with patient organisations can support knowledge generation around adverse events and clinical outcomes based on their experiences which is invaluable.”

Michael Oberreiter, Head of Global Access, Roche: “It is not possible to deliver better health outcomes without putting the patient front and centre when designing solutions. This needs to start as early as ensuring involvement in clinical trials [design]. It is also crucial that as we seek to humanise healthcare, that we support healthcare systems where care follows the patient, not the patient having to follow care.”

Session glossary:

Human immunodeficiency virus (HIV), World Health Organisation (WHO), Non communicable diseases (NCDs), Health technology assessment (HTA), Non-Governmental Organisation (NGO), Intensive care unit (ICU), Public-private partnerships (PPP), Memorandum of Understanding (MoU), Human papillomavirus infection (HPV)

Click below to watch the AM panel session from the Uniting in Action: Humanising Healthcare in Practice event!
Click below to watch the PM panel session from the Uniting in Action: Humanising Healthcare in Practice event!

Post-event resources:

Explore the IEEPO Position Paper infographic to delve deeper into the calls to action for Humanising Healthcare!
Utilise the action plan template found in the IEEPO Position Paper toolkit to help you plan how to action change locally!
Exchange experiences by submitting a best practice poster or resource for the IEEPO LEARN Library or PHC hub!
Want to learn more? Go to the event overview page to watch the IEEPO 2023 ‘Uniting in Action' session recordings and to find out more.

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