European Patients' Podcast: The Voice of Patients in Europe

On today’s episode we welcome MEP Tomislav Sokol, who is supporting and endorsing our #Vote4Patients campaign and the Patient Organisations’ Manifesto. We’ll go through some highlights of his work on health during this mandate, the role patients organisations in the healthcare ecosystem, and the future of health in Europe, in the coming years.

The ⁠Organisation for Economic Co-operation and Development⁠ (OECD) is an international organisation with 38 member states that works to build better policies for better lives. Its goal is to shape policies that foster prosperity, equality, opportunity and well-being for all.

Health is an important area of work, and in close collaboration with policy makers, patients and healthcare professionals the OECD supports health system to become more people centred.

In this episode, we talk about the OECD's groundbreaking initiative: known as PaRIS - the Patient-Reported Indicator Surveys. Through PaRIS, countries collaborate to develop, standardise, and implement vital indicators that measure the outcomes and experiences that matter most to patients. A part of this initiative is the International Survey of People Living with Chronic Conditions, a pioneering effort to evaluate patient outcomes and experiences in primary care settings worldwide. PaRIS aims to bridge a crucial gap in primary healthcare by exploring various aspects, including access to care, quality of life, pain management, physical functioning, and psychological well-being.

Michael Van Den Berg is the project manager of the Paris initiative. Joining him is Candan Kendir, a health policy analyst at OECD.

In this episode of EPF's The EU Patients' Podcast, we talk about the PROPHET project.

In light of 900,000 people in the EU dying yearly due to being exposed to risk factors for chronic diseases that are largely preventable such as circulatory diseases, respiratory diseases, and various types of cancer, the idea of the project is to introduce a Personalised Prevention Roadmap for future healthcare.

The project consortium will do this by developing a Strategic Research Innovation Agenda, or what we call a SRIA. The SRIA will support the adoption of innovative, sustainable, and effective personalised programmes in the EU, which can prevent chronic diseases in the first place.

Learn more as we delve into the project's framework, ambitions, and mission with project coordinator Stefania Boccia.

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Joined by Claudia Louati, EPF's Head of Policy, we're unraveling the layers of the pharmaceutical legislation revision – a topic that not only shaped 2023 but continues to remain a high priority in the healthcare agenda of the new year.

Our guest in this episode of The EU Patients' Podcast is Vivian Leung, Antimicrobial Consumption Expert for the European Centre for Disease Prevention and Control (ECDC).

Vivian Leung works on the European Surveillance of Antimicrobial Consumption Network (ESAC-Net) and coordinates the surveillance of antibiotic consumption across EU/EEA countries. We met Vivian in the podcast last year as well to discuss the important topic of antimicrobial resistance.

In this episode, we delve once again into the topic of AMR as a global health priority, this time in light of 2023’s European Antibiotic Awareness Day.

Welcome to the very last episode of PERISCOPE Talks, with a special guest: in this episode we welcome co-coordinator and strategy director of the PERISCOPE project Andrea Renda.

October 2023 marks the end of the project. A final conference took place on 8 September 2023. In this episode, we look back on what sparked the idea for PERISCOPE, some of the primary goals and focal points, and ways to ensure pandemic preparedness for the years to come.

Listen to more episodes of PERISCOPE Talks and other episodes here.

Welcome to a new episode of PERISCOPE Talks. If you’re tuning in for the first time, the PERISCOPE project was launched in 2020 and investigates the broad socio-economic and behavioural impacts of the COVID-19 pandemic, to make Europe more resilient and prepared for future large-scale health risks.

In the context of PERISCOPE, the European Patients' Forum, in collaboration with project partners FEAM, CEPS, and INSERM, conducted a survey to assess the impacts of the COVID-19 pandemic on the welfare of patients with chronic diseases. The COVID-19 pandemic has posed significant challenges to patients, especially as healthcare services faced major disruptions and backlogs and the hospital environment became less safe.

A special thanks goes out to the co-authors of the survey report:Simon Ducarroz(INSERM),Juan José Fernández Romero,Emma Martinez(FEAM), andTimothy Yeung(CEPS).

To discuss the results of the survey, we have a chat with Anca Toma, Executive Director of EPF.

Joining The EU Patients' Podcast today in PERISCOPE Talks special are Michele Calabrò and Marco Di Donato, respectively Director and Policy and Project Officer at EUREGHA, otherwise known as European Regional and Local Health Authorities. EUREGHA is a partner in the PERISCOPE consortium. EUREGHA is a network of 21 regional and local health authorities covering more than 10 different European countries. The organisation aims to promote collaboration amongst regions and local authorities, more specifically regional and local health authorities in Europe, within the framework of policies related to public health and healthcare. EUREGHA also establishes focused collaboration with the Institutions of the European Union and with the international and public organisations related to public health and healthcare throughout the world.

In this episode, we look back on the project's final conference that took place on 8 September 2023 in Brussels, explore the role EUREGHA played in developing the MOOCs (Massive Open Online Courses), and look at Euregional collaboration in pandemic preparedness in Europe.

Welcome to our special World Patient Safety Day podcast episode.

In this episode, we welcome OECD's Niek Klazinga on the podcast. Niek Klazinga is a medical doctor by training and professor of social medicine at the Academic Medical Centre at the University of Amsterdam since 1999. Niek has been coordinating the Health Care Quality Indicator work of the OECD in Paris since 2007. Over the past 25 years, he has been involved in numerous projects and publications on quality of healthcare. Since his retirement in September 2022, he works as strategic advisor to the OECD’s HCQO programme, i.e., the Health Care Quality and Outcomes programme.

In this special episode of The EU Patients’ Podcast, we will talk about World Patient Safety Day, best practices to ensure patient safety is at the centre of healthcare systems, the OECD’s initiatives on identifying and promoting strategies to support cross-national sharing and learning of patient safety, and the new report on patient engagement in patient safety.

This episode will bring into the spotlight one of our longstanding projects: EATRIS-Plus.  EATRIS-Plus aims to build further capabilities and deliver innovative scientific tools to support the long-term sustainability strategy of EATRIS as one of Europe’s key research infrastructures for Personalised Medicine.

As the project will come to an end in December 2023, we invited Oriana de Sousa to sit with us and reflect how meaningful patient engagement took shape throughout all the activities of the project. 

Oriana is a Patient Advisory Committee representative for the EATRIS+ Project. A survivor of rare cancer, she's now a Patient Advocate and EUPATI-certified Patient Expert. Oriana recently completed training in Scientific Innovation and Translational Research with EURORDIS. Her advocacy focuses on childhood, AYAs, and Small Cells Ovarian Cancer. She's part of the Rare Tumors of the Ovary network and Genomics in Oncology Patient Expert Network, and an Ambassador for the EU-CAYAS-NET Project. Oriana collaborates with diverse stakeholders, amplifying patient voices and championing a patient-centered approach.