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European Patients' Podcast: The Voice of Patients in Europe

European Patients' Podcast: The Voice of Patients in Europe

By eupatientsforum

The European Patients’ Podcast is your source for conversation and news around the world of patient advocacy and empowerment. This podcast is brought to you by the European Patients’ Forum, the leading voice of patient organisations in Europe with 77 members across the continent.

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Project spotlight | PROPHET

European Patients' Podcast: The Voice of Patients in EuropeFeb 28, 2024

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15:11
Project spotlight | PROPHET

Project spotlight | PROPHET

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.

💻Follow EPF X - @eupatientsforum LinkedIn - @european-patients-forum Facebook - @europeanpatientsforum 💻Follow PROPHET X - ⁠@EUHealthPROPHET LinkedIn - ⁠@prophet-eu


License code(s) music: BRPENWLJQJEVB7AD, 9CTIKI4HDPFYYBXY

Feb 28, 202415:11
2023: The Year of the Pharmaceutical Legislation

2023: The Year of the Pharmaceutical Legislation

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.

Jan 30, 202417:37
EAAD (European Antibiotic Awareness Day) - 18 November 2023 | With special guest Vivian Leung (ECDC)

EAAD (European Antibiotic Awareness Day) - 18 November 2023 | With special guest Vivian Leung (ECDC)

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.

Nov 18, 202315:27
PERISCOPE Talks

PERISCOPE Talks

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.

Oct 25, 202322:45
PERISCOPE Talks

PERISCOPE Talks

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), and Timothy Yeung (CEPS).

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


Oct 24, 202315:45
PERISCOPE Talks

PERISCOPE Talks

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.

Oct 11, 202314:48
World Patient Safety Day - 17 September 2023 | With special guest Niek Klazinga (OECD)

World Patient Safety Day - 17 September 2023 | With special guest Niek Klazinga (OECD)

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.

Sep 17, 202317:57
Project spotlight | EATRIS-Plus

Project spotlight | EATRIS-Plus

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.

Aug 16, 202316:58
Member focus: AOECS - Katre Trofimov on The EU Patients' Podcast

Member focus: AOECS - Katre Trofimov on The EU Patients' Podcast

In this episode, we talk to EPF member AOECS' board director Katre Trofimov on marking Coeliac Disease Awareness Day, the issues that arise from underdiagnosis, inflation, and high food prices, reaching out to the research community, and the leverage of the ecosystem coming together. Join us for this interesting chat and subscribe to The EU Patients' Podcast for more on the latest in the world of patient advocacy.

Jul 25, 202315:59
PERISCOPE Talks

PERISCOPE Talks

Today’s episode of the PERISCOPE Talks will discuss the contribution brought by Goethe University Frankfurt, with a particular focus on the online courses developed throughout the project.

Our guest today is Dennis Vetter from the Computer Science Institute, Goethe University Frankfurt. Dennis is a PhD student at the Frankfurt Big Data Lab at Goethe University Frankfurt. I He previously worked as a Machine Learning Engineer in the Netherlands and has a Bachelors and Masters degree in Computer Science. His research is focused on the application of artificial intelligence (AI) systems and the ethical implications of the AI decision making process.

Jul 14, 202313:43
PERISCOPE Talks

PERISCOPE Talks

Today’s episode will discuss the work done in work package two by Karolinska Institutet, with a focus on the effects of the COVID-19 pandemic on mental health in several European countries.

Our guest today is Anna-Clara Hollander. She is an associate professor at the Karolinska Institutet and clinical psychologist studying how social risk factors affects psychiatric morbidity and mortality and utilization of psychiatric care. In the Periscope project, the Karolinska Institutet studies mental health and health inequalities in the context of the COVID-19 pandemic.

May 31, 202310:10
20 Years of EPF - Looking back with key figures from EPF history: Marco Greco
Apr 25, 202320:03
Project Spotlight ∣ EU-PEARL: the project comes to an end

Project Spotlight ∣ EU-PEARL: the project comes to an end

The latest episode of the EU Patients’ Podcast is out now! In this episode, we are marking the end of the EU-PEARL project, an Innovative Medicines Initiative project, that has been working towards simplifying and standardising clinical trial platforms to make them more patient-friendly and efficient. Making clinical trials more efficient and patient friendly can ensure that individuals find the clinical trial that matches their needs, that companies enrol enough patients, and eventually, that new treatments are evaluated in better ways.


To mark the end of this initiative, we spoke with project partners, Annekatrin Krause and Mathieu Boudes. They will be sharing insights on EU-PEARL’s highlights, how patient engagement was incorporated throughout the project, and what the hopes are for the future, after the project's completion in April 2023.

Listen in for an informative discussion on how the EU-PEARL project is transforming clinical trials for the better. .

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EU-PEARL has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 853966-2. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.


Apr 17, 202313:09
20 years of EPF - Looking back with key figures from EPF history: Nicola Bedlington
Mar 29, 202320:20
PERISCOPE Talks

PERISCOPE Talks

Today’s episode will focus on the COVID-19 ATLAS, a tool developed by the PERISCOPE team to provide advanced visual analytics about several aspects of the COVID-19 pandemic, with a focus on its impact on health, economy and society. 

Our guest today, Vladimir Urošević, is the Development Manager of Belit. Vladimir has over 20 years of industry experience in all stages of software development, from requirements and system analysis, through solution design and architecture, programming and performance optimization to development team and project management. He has worked on the development of major IT infrastructure systems on national level in Serbia and in neighboring countries, in finance, public administration, e-health, energy efficiency, and other domains. 

Mar 14, 202321:47
PERISCOPE Talks
Feb 06, 202311:33
Project Spotlight ∣ H2O: Strengthening the Patient Voice in Health Care

Project Spotlight ∣ H2O: Strengthening the Patient Voice in Health Care

In today’s episode, we will discuss the Innovative Medicines Initiative ‘H2O: Health Outcomes Observatory’ project.

The Health Outcomes Observatory (H2O) is a public-private partnership drawing together patients, providers, researchers, industry and policy makers who share an interest in putting patients at the heart of healthcare.

H2O is set to transform the use of patient-reported information in health care, enrich the interaction between patients and health care providers and, as a result, drive better outcomes for patients.

To help us understand more about H2O and the value of patient reported outcomes, we’ve invited two guests today; Linetta Koppert and Jolanda Koenders, the country leads for H2O in the Netherlands. 

Linetta is surgical oncologist at Erasmus Medical Center in the Netherlands and is at the forefront of incorporating patient-reported outcomes into patient care. She works with patient-reported outcomes within the conversation room for breast cancer since 2015. Jolanda is head of new product planning at Takeda and is committed to increase patients’ access to innovative medicine through sustainable collaborations on the national and European level.

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The Innovative Medicines Initiative is a partnership between the European Union and the European pharmaceutical industry, represented by the European Federation of Pharmaceutical Industries and Associations (EFPIA). It is working to improve health by speeding up the development of the next generation of medicines, particularly in areas where there is an unmet medical or social need. It works by facilitating collaboration between the key players involved in health research, including universities, research centres, the pharmaceutical and other industries, small and medium-sized enterprises (SMEs), patient organisations, and medicines regulators. IMI is the world’s biggest public-private partnership (PPP) in the life sciences. http://www.imi.europa.eu/

Jan 17, 202315:31
 Sexual Health & Wellbeing and Young Patients - Looking back on STYPA 2022 with Amaranta and Ozla

Sexual Health & Wellbeing and Young Patients - Looking back on STYPA 2022 with Amaranta and Ozla

In this 9th episode of The EU Patients' Podcast, we discuss the 2022 edition of EPF's STYPA programme with two of its participants. STYPA is our platform and annually recurring summer training course for young patients between the ages of 18 and 30. This year's edition of STYPA focused on sexual health and wellbeing for young patients, a topic that was chosen in line with a survey carried out by the EPF Youth Group. It showed us how many young patients experience body confidence issues, challenges in communication around intimacy with their partner or healthcare providers, and persistent taboos around sexuality and people with chronic conditions.  

In 2022, 35 young patients from all over continental Europe met both online and in-person in Strasbourg. Between June and October, they talked about these important issues, and together, they developed a set of communication principles concerning young patients and sex. 

Let Amaranta and Ozla tell you more!


Curious about STYPA? Or thinking about joining in 2023? Continue reading here.


💻Follow EPF!  

Twitter - @eupatientsforum

LinkedIn - /europeanpatientsforum 

Facebook - /EuropeanPatientsForum


Dec 22, 202217:01
PERISCOPE Talks
Dec 07, 202217:46
European Antibiotics Awareness Day with ECDC

European Antibiotics Awareness Day with ECDC

European Antibiotic Awareness Day (EAAD) is a European health initiative coordinated by the European Centre for Disease Prevention and Control. 

It provides a platform and support for national campaigns on the prudent use of antibiotics in the EU/EEA and takes place each year across Europe on 18 November. 

EAAD is held in partnership with the World Antimicrobial Awareness Week, organised annually by the World Health Organization from 18 to 24 November. 

Join us for an insightful discussion with Vivian Leung (ECDC antimicrobial consumption expert) on the events organised by ECDC to mark EAAD, but also about the  most common misconceptions about antibiotic resistance. 

Nov 15, 202219:04
Marking #WorldMentalHealthDay with the EU-PEARL project

Marking #WorldMentalHealthDay with the EU-PEARL project

World Mental Health Day is marked every year on October 10th – its an initiative of the World Health Organisation to raise awareness and mobilise efforts in support of mental health. This years’ theme is Make Mental Health & Wellbeing for all a Global Priority.

Today we will be speaking to members of the EU-PEARL project – an Innovative Medicines Initiative project aiming to make clinical trials more efficient and patient friendly by standardising and simplifying clinical trial platforms. EU-PEARL is initially focusing on four disease areas, including Major Depressive Disorder.

Our guests on today’s pod are Carmine Pariante and Fanni-Laura Mäntylä. Carmine Pariante is Professor of Biological Psychiatry at the Institute of Psychiatry Psychology and Neuroscience at King’s College London. He also co-leads EU-PEARL’s work in MDD. Fanni-Laura Mantyla is a communications professional and mental wellbeing activist. She was chair of the 5th European Health Parliament’s Committee on Mental Health and Healthy Workforce, and sits on the EU-PEARL Patient Advisory Group.

Oct 10, 202219:16
Member Focus: World Duchenne Organization
Oct 07, 202213:43
FH Paediatric Screening with Magdalena Daccord (FH Europe)
Sep 15, 202218:20
PERMIT Project Comes to an End

PERMIT Project Comes to an End

In today’s episode, we will discuss the Horizon 2020 ‘Personalised Medicine Trials’ or PERMIT project, which concluded at the end of June 2022. To help us understand more about the project, its aims and impact, and what comes next, we’ve invited Paula Garcia to speak with us today. Paula is Project Manager at ECRIN, the European Clinical Research Infrastructures Network, the organization that coordinated the PERMIT project.

On June 16th and 17th the PERMIT project consortium, personalised medicine experts, and other invested stakeholders met in Milan (and online) at the Istituto di Recherche Farmacologiche Mario Negri to discuss the recommendations that were developed over the 2.5 years of the project. PERMIT aimed to improve personalised medicines research by establishing recommendations based on a series of workshops held with experts in order to establish recommendations on methodology which can be widely accepted. 

Personalised Medicine has enormous value for patients, as it can reduce trial-and-error treatments, enable better choices for determining which medications would be most effective, and it can help us also manage rising healthcare costs. By participating in PERMIT, EPF ensured the patient perspective and patient journey were considered throughout the workshops, and ultimately, the recommendations put forward by expert groups. 

To learn more about the project, head to: https://permit-eu.org/


PERMIT has received funding from Horizon 2020, under grant agreement number 874825.

Jul 01, 202214:10
EPF Congress 2022 - Continuing the Conversation on Digital Transformation with Anca Toma
Jun 21, 202213:30
Advocating for Gender Equity in Neurology with EFNA

Advocating for Gender Equity in Neurology with EFNA

The International Day of Women, celebrated every year on 8 March, is the perfect occasion to imagine the potential of a world that is diverse, equitable, and inclusive. A world where difference is valued and celebrated. And there is no better day to celebrate women's achievements, to raise awareness against bias that affect them, and to take action for equality. This year, we are happy to talk about a great initiative from one of our members, EFNA - the European Federation of Neurological Associations.

EFNA’s Advocacy Awards will take place in May 2022. These awards recognise the contribution of an individual or group to the development and promotion of advocacy for people with neurological disorders in Europe. On this occasion, the awards will focus on the topic of ‘Advocating for Gender Equity in Neurology'. Find out more about the Awards here: www.efna.net/advocacyawards2022

On 8 March, EFNA also launched a new survey, 'Assessing diagnosis and care pathways of people living with neurological disorders in Europe'. 

This survey has been developed with the aim of identifying, reporting and beginning to address the varied challenges facing all affected by neurological conditions, either as patients or caregivers, from diagnosis to care pathway. Data generated through this survey can be used to address the unmet needs and challenges facing all affected by neurological conditions.

You can access the survey here: https://www.surveymonkey.com/r/JQW27L2

Deadline for completion of the survey is Tuesday, April 19th.



Mar 08, 202208:14
Rare Disease Day 2022 with EURORDIS Anna Kole

Rare Disease Day 2022 with EURORDIS Anna Kole

Celebrated every year on 28 February, Rare Diseases Day was launched in 2008 by EURORDIS to reflect and raise awareness on rare diseases and their impact on patients’ lives.

There are over 300 million people worldwide living with a rare disease. 72% of rare diseases are genetic, and of these genetic diseases 70% start in childhood.

There is no cure for most of these disorders and few treatments are available for those who are affected. EURORDIS works towards more equitable access to diagnosis, treatment, care, and social opportunity.

The theme for Rare Disease Day 2022 is SHARE YOUR COLOURS!, and today we asked Anna Kole, Public Health Policy Director at EURORDIS to explain more about it.

For more information on Rare Disease Day 2022 you can check the dedicated website www.rarediseaseday.org, and follow with #RareDiseaseDay on Facebook, Instagram, and Twitter for more content.

Feb 28, 202211:55
Sexual Health & Wellbeing of Young Patients with EPF Youth Group
Dec 07, 202120:16
PERISCOPE Monthly Talks #8 - Data Atlas Project with Enea Parimbelli
Nov 23, 202121:37
Fertility Week with Satu Rautakallio-Hokkanen of Fertility Europe
Nov 02, 202113:56
PERISCOPE Monthly Talks #7 - Prof. Giuseppe Costa
Oct 27, 202121:41
Liver Cancer Awareness Month with ELPA's Marko Korenjak
Oct 19, 202129:44
Patient Health Data with The BMJ's Emma Doble (EPF Congress 2021)

Patient Health Data with The BMJ's Emma Doble (EPF Congress 2021)

As you may know, we’re hosting our virtual EPF Congress 2021 from the 26-29 of October. Over the course of four days, we’ll examine the digital transformation of healthcare and highlight the added value of patient partnerships.

Today, we’re speaking with one of our Congress partners, the BMJ. Founded in 1940, the BMJ is now much more than just a high impact medical journal, it’s also a champion of better research, clinical practice & healthcare policy. As a Congress partner, they will be co-leading a plenary session on the 27th October on Health Data between access, control and ownership.

We’re joined by BMJ Patient Editor Emma Doble to give us a brief glimpse into their session to see the pros, cons, challenges and impact of #healthdata on patients’ lives.

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Still time to register for the EPF Congress 2021. Please visit epfcongress.eu 

Oct 05, 202110:29
PERISCOPE Monthly Talks #6 - Health Governance with Timothy Yeung
Sep 28, 202118:57
FH Awareness Day with FH Europe's Magdalena Daccord
Sep 21, 202121:51
#WorldPatientSafetyDay with PAQS' Quentin Schoonaere

#WorldPatientSafetyDay with PAQS' Quentin Schoonaere

Today, we’re discussing a cause that is quite important to us, World Patient Safety Day, which takes place every year on 17 September. This year’s theme is “Safe maternal and newborn care”. #WorldPatientSafetyDay was established in 2019 to enhance global understanding of patient safety, increase public engagement in the safety of health care and promote global actions to enhance patient safety and reduce patient harm.

To help us learn more about patient safety and this year’s theme, we’ve invited Quentin Schoonvaere, Data and Improvement Officer from Platform for Continuous Improvement of Quality of Care and Patient Safety (PAQS) on the pod today.

Created in 2013, PAQS aims to promote, support and organise the development and implementation of initiatives of continuous quality of care and patient safety improvement in Brussels and Walloon healthcare institutions. For more information about PAQS, please visit their website: www.paqs.be

EPF along with PAQS appeal to all healthcare institutions to encourage them to share their best practices in terms of patient safety. During the continuing challenges of the COVID-19 pandemic, a combination of virtual and other activities are being planned by WHO to observe and celebrate the Day in September 2021. The signature mark of the global campaign is to light up iconic monuments, landmarks, and public places in the colour orange.

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Registration is still open for the virtual EPF Congress 2021, which is less than two months away. The preliminary programme is now available at www.epfcongress.eu. If you haven’t registered yet, please do so and join us to explore the digital transformation of healthcare.


Sep 16, 202127:39
All about EHDEN, Part 3: Academy 101 Course Launch

All about EHDEN, Part 3: Academy 101 Course Launch

Podcast Part III  on  European Health Data Evidence Network, or EHDEN for short.

More interested in the topic of health data? Do you want to understand more about health data governance, and how real world insights are harnessed at scale?

In this episode, we are joined by Nigel Hughes, an expert in Real World Data/ Real World Medicine. He is the Scientific Director at Janssen Research and Development, and the EHDEN project Lead.

Nigel helps us to understand key concepts around data privacy, and what comes next for the EHDEN project, including a special announcement …

Sep 10, 202112:49
World Duchenne Awareness Day with World Duchenne Organization (WDO)

World Duchenne Awareness Day with World Duchenne Organization (WDO)

7 September is World Duchenne Awareness Day.

In today’s episode, we speak with Elizabeth Vroom and Nicoletta Madia from the World Duchenne Organization on the importance of celebrating World Duchenne Awareness Day and raise awareness on Duchenne and Becker muscular dystrophy.

This year’s theme for World Duchenne Awareness Day is Adult Life & Duchenne - As life expectancy of people affected by Duchenne MD has increased significantly in the past decades, adults living with the disease are not an exception anymore.

To get involved and support the cause, you can visit www.worldduchenne.org or the dedicated website for the World Duchenne Awareness Day, www.worldduchenneday.org, where you can find more information on this year’s theme and activities.

Sep 07, 202109:06
PERISCOPE Monthly Talks #5 - Mental Health Impact of COVID-19 with Prof. Walter Osika
Aug 09, 202119:43
EPF Congress 2021 and Patient Co-Production with EIT Health CEO Jan-Philipp Beck

EPF Congress 2021 and Patient Co-Production with EIT Health CEO Jan-Philipp Beck

As we lead up to our virtual #EPFCongress2021 in October, we’ll be chatting with various speakers, partners and participants about key topics regarding digital health and the patient experience.

Today, we speak with one of our Congress partners, EIT Health. Funded by the European Commission, EIT Health brings together the worlds of business, research and education, to help enable the life-changing health innovation that Europe needs. As a Congress partner, they will be co-leading a plenary session on Patient Co-Production and Design.

We’re joined by EIT Health’s CEO Jan-Philipp Beck to discuss how health systems can embrace digital health, the role of patients and his hopes for the Congress.

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Registration is OPEN for our EPF Congress 2021, and we’re granting FREE registration to patient advocates and health NGOs who register before 1 September. All programme and registration details can be found at www.epfcongress.eu.

Jul 27, 202111:16
World Brain Day with EMSP's Emma Rogan

World Brain Day with EMSP's Emma Rogan

Today, we’re discussing World Brain Day, which takes place every year on 22 July. This year’s theme is Stop Multiple Sclerosis. MS is a neurological disease impacts every aspect of a person's life, with effects ranging from cognitive impairment to significant physical disability.

To help us learn more about the condition and this year’s World Brain Day, we speak with Emma Rogan from the European Multiple Sclerosis Platform, on the pod today. Emma joined EMSP in 2014 and works on Campaigns and External Engagement, outreach to young people with MS and supporting her great team on other EMSP initiatives.

A message from the European Multiple Sclerosis Platform (EMSP):

Stand with the 1 million+ people with MS in Europe. Use the #WorldBrainDay on the 22nd July, sign up to the EMSP newsletter on EMSP.org and get active in our campaigns to ensure quality care for people with MS in Europe and across the world.

On the 22nd July, EMSP is launching a more interactive and functional MS Barometer platform where people can compare country scores and learn key pieces of data. Visit https://msbarometer.eu/

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Registration is open for the #EPFCongress2021 on the digital transformation of healthcare. The event is free for EPF members and we're offering free registration to patient advocates and health NGOs before 1st September. All registration and programme details available at epfcongress.eu. 

Jul 20, 202124:54
PERISCOPE Monthly Talks #4 - Economic Impact of COVID-19 with CEPS' Daniel Gros

PERISCOPE Monthly Talks #4 - Economic Impact of COVID-19 with CEPS' Daniel Gros

On this month's episode of the PERISCOPE Monthly Talks, we take a look at the economic impact of the COVID-19 pandemic and understand the positives and negatives of Europe’s actions.

Our special guest today is Daniel Gros who has written several articles and thought pieces regarding the financial and political impacts of the pandemic since last year. He is a Member of the Board and Distinguished Fellow at the Centre for European Policy Studies (CEPS). Prior to joining CEPS, Daniel worked at the IMF and at the European Commission as economic adviser to the Delors Committee that developed the plans for the euro.

For more information about the project, please visit the PERISCOPE website.

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REGISTRATION IS NOW OPEN for our virtual EPF Congress 2021, taking place on 26-29 October. The event will focus on the digital transformation of healthcare to highlight the added value of patient partnerships.

Registration is FREE for EPF Members and we’re granting free registration to patient advocates and health NGOs before September 1st so reach out to us at congress@eu-patient.eu for your free registration code.

Jun 28, 202112:16
World Continence Week with WFIPP's Mary Lynne Van Poelgeest
Jun 17, 202116:07
Medication-Related Patient Safety with Tjaša Zajc
Jun 15, 202116:49
Impact of COVID-19 on Liver Patients (COBALT Study) with Dr Gautam Mehta
Jun 08, 202116:26
International Day of Action for Women's Health with Europa Donna

International Day of Action for Women's Health with Europa Donna

28 May is the International Day of Action for Women’s Health, celebrated every year to address the multiple causes of disease and death that affect women all over the world.

Today’s episode features a discussion with Barbara Klein, the Communications Officer for Europa Donna - The European Breast Cancer Coalition, to help us better understand the reality of breast cancer and what it means to have access to quality health care for European women.

May 28, 202121:59
PERISCOPE Monthly Talks #3 - Modelling Vaccination Roll-Outs with Dr Raffaele Bruno

PERISCOPE Monthly Talks #3 - Modelling Vaccination Roll-Outs with Dr Raffaele Bruno

Last month, we discussed the importance of data for forecasting, particularly with the European Covid-19 Forecast Hub and today we’ll focus on modelling vaccination rollouts and the requirements for non-pharmaceutical interventions during the COVID-19 pandemic.

To help understand the modelling of vaccination roll-outs, we’ve invited Dr. Raffaele Bruno, who recently co-authored an study in NATURE on “Modeling vaccination rollouts, SARS-CoV-2 variants and the requirement for non-pharmaceutical interventions in Italy”.

Dr Raffaele Bruno is the Director of Infectious Diseases (PoliClinico San Matteo) and a Professor of Infectious Diseases, University of Pavia.

If you don’t recall or are a first time listener, the PERISCOPE project was launched in late 2020 and investigates the broad socio-economic and behavioural impacts of the COVID-19 pandemic, in order to make Europe more resilient and prepared for future large-scale risks.

For more information on PERISCOPE, visit www.periscopeproject.eu

May 25, 202109:52
World IBD Day with EFCCA's Isabella Haaf
May 18, 202116:46
European Mental Health Week with MEP Alviina Alametsä
May 10, 202118:23
Patient-Reported Outcome Measures (PROMs) in HIV R&D with EATG

Patient-Reported Outcome Measures (PROMs) in HIV R&D with EATG

On today's episode of the EU Patients' Podcast, we catch up with our member, the European AIDS Treatment Group (EATG), to discuss patient advocacy within the HIV community.

EATG has recently published a research document called “PROMs in HIV research and development: analysis of community needs and engagement”. The purpose of the work is to describe the current use of PROMs in HIV research and development as well as to inform an advocacy agenda to guide the use and development of PROMs, highlighting the role of communities living with or affected by HIV.

To help provide greater insight on the use of patient reported outcome measures (PROMs) for the development of new HIV medicines,  we’ve invited the main author of the research document, Kevin Moody and Alain Volny-Anne, who is a member of EATG and participant in the development of the work through the EATG PROMise Task Group.

Founded in 1992, the European AIDS Treatment Group (EATG) is a network of 150 members from 45 countries in Europe. They are a patient-led NGO that advocates for the rights and interests of people living with or affected by HIV/ AIDS and related co-infections and represent the diversity of more than 2.3 million people living in Europe. To learn more about EATG, visit their website www.eatg.org 

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for more information about the European Patients' Forum (EPF), visit our website: www.eu-patient.eu 

Apr 27, 202115:32