All posts by Laurent Louette

European Society of Radiology: Involving Patients for Better Safety

The European Congress of Radiology (ECR) took place in Vienna from 1-5 March 2017 providing a platform to discuss strategies towards improved patient safety and quality of care. Patients and healthcare professionals exchanged views on best practices in patient involvement.

The 4-day ECR 2017 congress gave the opportunity to participants to join in three sessions organised by the European Society of Radiology’s Patient Advisory Group (ESR-PAG) – a platform bringing together patients and imaging professionals – to discuss developments in the field of medical imaging to the benefit of patients in Europe.

Best Practices in Patient Involvement

The first breakout session Improving patient safety and quality of care in clinical radiology explored how audit measurements and standards can improve patient safety and quality of care. Speakers presented concrete examples of best practices on implementing these standards in the radiology department:

  • Dr Barry Kelly, chair of the ESR Audit & Standards subcommittee, underlined the need to analyse and audit all partners involved, including doctors themselves, whose working conditions and training can have an influence on patient safety.
  • Erik Briers, (The European Prostate Cancer Coalition – Europa Uomo), focused on the patient journey through the various radiology departments, suggesting that information tailored to the different levels of literacy should be proposed, together with procedures on how to handle questions from patients and next of kin or carers.
  • Dr Dominique Carrié, a radiologist from Toulouse, France, presented the patient satisfaction questionnaire prepared by the ESR-PAG. He underlined that “assessing patients’ needs and concerns is crucial to practice radiology closer to the patient”.

The last session focused on Big data – data management, standardisation, access and protection, detailing its importance for personalised medicine in radiology.

Prof. Peter Mildenberger, chair of the ESR Professional Issues and Economics in Radiology Subcommittee, provided an overview of European developments. He pointed out that while new developments in medical imaging offer new opportunities, it could also generate a lot of different and more sophisticated work than conventional x-ray or CT (computed tomography) scans.

Nicola Bedlington, Secretary General of the European Patient’s Forum (EPF) and co-chair of the ESR-PAG, presented the patient perspective on big data and noted the increasing drive to improve collection and use of patients’ data in order to achieve better, more sustainable healthcare and advance health research. She highlighted that “the only way to do this in a meaningful and valuable way is together with patients”.

Finally, the EuroSafe Imaging Café “Together for Patient Safety” came down as a popular place for informal discussions and networking between patients and professionals. The Café was notably the occasion to promote the new information leaflet about the ESR-PAG aiming to raise awareness and promote quality and safety in medical imaging.

All the recorded ESR-PAG sessions are available in podcasts on ECR Online.

5 Questions to the European Congenital Heart Diseases Organisation (ECHDO)

Every month we put the spotlight on one of our members. Today, we are delighted to catch up with the European Congenital Heart Disease Organisation (ECHDO), who recently joined EPF.

  1. What’s on the top of your agenda?

Our main objective is to bring congenital heart disease (CHD) associations together. Our members have a wealth of experience in overcoming the challenges faced by new, growing or long-established organisations, including raising funds, registering as a legal body, recruiting volunteers and staff, setting up events, and running campaigns. By connecting our members together, we create a platform for exchange supporting the growth of CHD patient organisations.

Another core objective is to support local CHD associations in setting up national coalitions in countries where such a network does not exist yet. By supporting the development of national CHD organisations, we help raise awareness of the condition and ultimately provide greater support to patients. We also collaborate with scientific associations, such as the Association of European Pediatric Cardiology (AEPC) and help patients and families with information regarding their health care, especially when they have to travel abroad.

  1. Why does your organisation exist?

Our agenda is to share information and experience in order to improve access to the best possible care and treatment for all people affected by congenital heart disease in Europe. Our organisation exists to bring European congenital heart disease organisations together in order to share best practices on the many challenges faced by CHD patients. Our organisation also provides the opportunity to submit joint proposals for European projects.

  1. What is your biggest achievement as an organisation?

We are very proud of having contributed to the setting up of national coalitions of CHD patients, such as “AICCA”, the Italian GUCH (Grown-Ups with CHD) Association and Beating Hearts Malta (BHM).

Sharing expertise and knowledge with many different CHD associations, for instance by organising major European conferences can also be considered a main achievement, as it eventually helped growing the patient organisations and in turn, supported the patients and/or carers in their everyday lives.

  1. What is for you the key benefit of your organisation’s involvement in EPF?

Being an EPF member brings a lot of benefits:

  • We can connect with other umbrella organisations;
  • We receive information and training about patient empowerment;
  • By getting together under the umbrella of EPF, we are able to influence European policy-makers and make our voice heard at the EU level.
  1. What are your main challenges?

Many people do not even know about the existence of congenital heart disease. One main misconception is that heart disease occurs only at a later stage in life. More education is required when it comes to the general population.

International Parkinson’s Community Get Together

Each year, Parkinson’s organisations and individuals across the world observe 11 April as World Parkinson’s Day. This year’s World Parkinson’s Day is a landmark anniversary, as the date marks 200 years since Parkinson’s was recognised as a health condition.

The #UniteforParkinsons campaign was developed by two charities, the European Parkinson’s Disease Association (EPDA – EPF member) and Parkinson’s UK. Both organisations aim to position World Parkinson’s Day as a platform to grow an active global Parkinson’s community that can collectively advocate for change in the treatment and management of the condition.

The campaign is aimed at Parkinson’s stakeholders across the world, including:

  • People affected by Parkinson’s (patients, carers and family members)
  • local, national, regional and international Parkinson’s organisations
  • charity supporters and foundations
  • healthcare professionals
  • members of the research community
  • policymakers and decision-makers (both national and EU)
  • pharmaceutical industry companies.

Already supported by dozens of Parkinson’s organisations around the world, this campaign needs the support of as many countries, individuals and organisations as possible. By speaking together with one voice on 11 April, patient organisations will unite across the world to make it clear that 200 years without a cure is too long.

To this end, the campaign is calling for everyone to use the hashtag #UniteForParkinsons on 11 April – to share their experiences, campaigns and best practice, as well as their hopes and plans for the future.

To find out more about how you can support the campaign – both online and offline – and access a number of campaign resources, visit and/or email Resources are available in English, French, German, Italian, Spanish and Welsh.

Make sure you visit – the official #UniteForParkinsons media partner – in the lead up to 11 April to get inspired and stay up to date with all the latest campaign news.

Continue reading International Parkinson’s Community Get Together

EPF VIDEO – Our Members, Our Compass!

The feedback from our members is the backbone of our work. The new EPF video will tell you all about our consultation processes, and how we can support our members growing, for better patient advocacy in the EU.

The short and animated video explains in just 2 minutes the special relationship EPF has with its members. Their feedback is vital to us; our work and credibility rely on it. The video illustrates the democratic consultative processes we use to collect our members’ concerns, comments and use them as our baseline for our policy positions and advocacy work. It ensures our message is strong and representative of our membership. It is the backbone of our work.

The video also develops on the benefits of being a member of EPF. Demonstrating that by sharing their expertise, our members enable us to influence decision makers in Brussels, giving their concerns a clear voice to play a central role in shaping European policies.

Have a look here on our YouTube channel and on our other social media handles. Like it, leave a comment and share it amongst your network!


Contact person:

Laurent Louette,

Transition to Adult Care – Role of the Pharmacists

Transition to adult care involves a wide range of stakeholders from hospital and health managers, health professionals, pharmacists, young patients and their families. The European Pharmaceutical Students Associations explains the crucial role of pharmacists in that regard.

There is a very low awareness and understanding of the Transition issues amongst many healthcare professionals in Europe. When confronted with the topic at the 13th Autumn Assembly of EPSA (European Pharmaceutical Students Association) the majority of the pharmaceutical students were confused and surprised to learn about the patients struggles. The topic was presented by a representative of the EPF Youth group, during the workshop entitled ‘Transition to Adult Care and its Psychological Impacts on Young Patients.

The workshop was part of the Educational program of the event and achieved 3 important results:

  1. During this interactive session the audience recognized that transition may represent a problem for young patients.
  2. The audience regarded the role of pharmacists in the transition process and suggested that the figure of the pharmacist can work along with doctors when talking to patients on topics like treatment and drugs.
  3. The pharmaceutical students shared their own perspectives, the realities in their respective countries, exchanged ideas and provided positive feedbacks. The outcome was an agreement that pharmacist need to be trained to be able to effectively talk to patients especially young ones.

The attendees were also presented some best practices that have been already implemented in different European countries. Such practices aim to tackle the lack of coordination among stakeholders who are in charge of ensuring that the process takes place as smoothly as possible. Thus a team made up of different professional figures, e.g. pediatric and adult primary care doctors, nurses and educators is deemed crucial when supporting young patients who move to the adult-centered health care.

Another point in common to projects/programs presented is that they are designed to equip young patients with skills and knowledge. The aim is to support the patients in taking control over their condition and to better self-manage. The figure of psychologist is also recognized essential to avoid any detrimental psychologic implications in bewildered young patients which often lead to low rates of adherence to specific treatments or drop-outs. But most importantly, the best practices suggest that transition is successful when young patients can share fears and doubts to other peers and are able to have access to the right information that allow them to live this delicate process efficiently and comfortably.

The workshop follows up on the roundtable the Youth Group hosted in Brussels last March which saw the involvement of different stakeholders ranging from healthcare professionals and patient organizations to MEPs and representatives of the academic world. Transition was defined as the process that young patients with chronic conditions go through when moving from child-centered to adult-centered health care systems and was identified as a major problem in the context of access to healthcare. Thus, it was recognized prominent importance on this year’s EPF agenda. Specifically, the rationale behind this workshop was the need to identify and limit the psychological issues that may arise during the process. When poorly managed, the transition can also result in lack of trust in health professionals and in the healthcare system.

‘EACH of Us Campaign’ – Debunking Myths about Mental Health

1 in 4 adults will experience mental health problems. EPF member Mental Health Europe set up a campaign to end stigma and raise awareness of mental health.

Each of us is part of the solution – Let’s end mental health stigma together’ so goes the tagline of the awareness-raising campaign run by Mental Health Europe (MHE). Focusing on 10 myths about mental health problems, MHE has developed a campaign to debunk prejudices and stereotypes by providing simple figures and facts. The campaign will also encourage people to share their own story with mental health to inspire others to openly talk about it. “Our aim is to change people’s minds and misconceptions about mental health problems, which are way more common than we think”, says MHE’s Communications Officer Ophélie Martin.

The appealing tagline ‘Each of Us’ recalls that each of us may experience mental distress at some point in life. In this regard, figures show that 1 in 4 people may encounter a mental health problem during their lifetimes, and 1 in 5 adolescents is affected by at least one psychological problem in any given year.

The objective of the campaign is to make people understand that having mental health problems does not mean that one cannot or should not participate in life and society. In fact, what MHE aims is to achieve a Europe where people with mental health problems live as full citizens and have full access to appropriate services and support. To this end, the campaign is a long-term project and is expected to evolve throughout the years. Hopefully, with the involvement of policy makers, stakeholders and civil society, goals such as implementing raising-awareness trainings in schools, universities and businesses will be achieved.

Finally, being a European initiative, ‘Each of Us’ complements already existing national anti-stigma campaigns and gives to the topic a different dimension. A European perspective will be particularly useful to encourage more exchange of best practices and dialogue at European level.

EPF supports the campaign and hopes that joint efforts will help to change minds across Europe and to improve the lives of people with mental health problems.

If you want to know more about the campaign and get involved, visit the website. Some of the campaign’s material is already available in different languages. You can also support the campaign only by sharing your own picture and using the #Eachofus hashtag

For more information about Mental Health Europe click here.


Contact person:

Sara Gayarre, Communications Intern.

An Englishman in Brussels

For three months Laurence Woollard represented the EPF Youth Group within our Secretariat. Now that his time in Brussels comes to an end, let’s look in the mirror and ask him about his experience, in a video interview.


On the 30th of June, the EPF secretariat will say goodbye to its EPF Youth Group representative, Laurence Woollard. From learning experiences to lifelong memories, Laurence tells all in a small video interview. Watch it on our Youtube channel, and let us know what you think!


‘Young Patients: Ready, Brilliant and Able to work!’

On Friday 20th May 2016, youth leaders from the EPF and European Multiple Sclerosis Platform (EMSP) co-hosted a workshop at the European Youth Event (EYE) in Strasbourg.


The main objectives of the workshop were to raise awareness about the importance of employment for young people with chronic conditions and to promote workplace adjustments.

Simon Duncan, a representative from the Boingboing Community Interest Company based in the UK, shares his thoughts and perspectives on the session and how he has overcome stigma as a wheelchair user when applying for jobs…

Why did you attend EYE 2016?

I was interested in seeing how people from different cultural backgrounds approach issues, such as bullying and youth unemployment.  I wanted to share my knowledge with others and try to find solutions to common problems together.

Why did you register for our workshop?

Unemployment for young people with chronic conditions is a huge issue in the UK and across the world. Take a university graduate with a chronic condition and/or disability for example; it is really demoralising that they find it almost impossible to enter the workplace at a level equivalent to their education and experience because of their health.

I wanted to gauge the extent of unemployment for those with chronic conditions throughout Europe and see if, by sharing experiences, we could come up with some potential solutions at a policy level to make the hiring process fairer and more accessible.

Have you experienced stigma when attending a job interview and/or in the workplace? How did you overcome this?

Yes, I have experienced stigma on different occasions during the hiring process. There was one interview in particular where I was clearly rushed on a test and my verbal answers were overlooked, which impacted on my overall confidence and performance. When I requested feedback, the HR representative was highly dismissive and disrespectful.

I overcome experiences like this in different ways. Firstly, I tend to find work mainly through referrals and connections. If people already know me and my skills, then they are more likely to hire me. Secondly, I do not work a standard 9am-5pm job. This enables me to circumvent the common issues that come with having a disability because I can choose my own hours, such as attending medical appointments.

Lastly, when I consider potential employers, I look to see if they are an equal opportunities employer or a member of an employment scheme, such as Two Ticks (when employers in Great Britain agree to take action regarding the employment, retention, training and career development of disabled employees).

Once I get into a role, I work as hard as I can to show that hiring me was a good decision and any stigma, whether covert or overt, was unwarranted.

What recommendations would you make to employers and decision-makers to improve the situation?

I would like improved transparency within the interview process. It should be overseen by a senior member of staff that has no vested interest in who is hired. They could write a report that details why one person was recruited over the other and make this freely available to all the candidates.

Changing the perception of young people with chronic conditions and/or disabilities is vital. Instead of viewing this as a weakness or potential cost to the company, employers should consider it as diversifying the work force and having staff who are highly adaptable and resilient; a result of living with a chronic condition and/or disability.

I would also like further clarity on the equal opportunities policy from different employers to find out if it is just a hollow gesture or if they truly deliver on their supposed ideals.


To download the full workshop report, please click here.


Contact person: Valentina Strammiello, Programme Officer,

Self-Care a Game-Changer for Chronic Diseases Prevention – EHP Recommendations

Chronic diseases are responsible for 86% of all deaths in the EU. Only 3% of health budgets are devoted on prevention activities. Time for a change, calls the European Health Parliament.

It is no news that more action is required to tackle the issues associated with changing lifestyles, an ageing population and increasing rates of chronic disease.  The related economic burden of chronic diseases is pressuring health systems around the world towards more efficient and more productive healthcare delivery.

The European Health Parliament’s Prevention and Self-Care Committee has taken on the challenge to address the above issues, by integrating self-care and preventive measures into multi-stakeholder solutions, incorporating the wider community.

Increasing efforts already exist to drive reductions in preventable chronic diseases.  However, there is still a major fundamental barrier that urgently needs to be addressed in order to ensure that these solutions are sustainable in the long-term – the allocation of appropriate funding.

The European Health Parliament’s Prevention and Self-Care Committee seeks to tackle this important barrier; for which the solution is not simply an increase in funding, but a sustainable solution, with tangible benefits both for the investor and for the patient.

The 12 young professionals composing the Prevention and Self-Care Committee of the EHP worked on a series of recommendations bringing innovative ideas to the table, at the EU, Member-States and community level.

EU level

  • Creation of EU-wide standards for performance of healthcare systems, with focus on patient and societal outcomes
  • New Joint Action on Self-Care and Prevention
  • Setting up an Interest Group on Self-Care and Prevention within the European Parliament
  • Slovakian and Maltese EU Presidencies to include recommendations around self-care and prevention in their upcoming priorities

Member States level

  • Break down the silos and ensure a ‘Prevention in All Policies’ approach
  • Increase budgets allocated to public health and prevention
  • Implement incentives for employers to promote self-care and prevention policies in the work place
  • Incentivise population to make positive choices and promote healthy habits

Community level

  • Creation of an investment fund for the implementation of self-care and prevention policies
  • Public-private partnerships to explore the scaling up of successful pilots on self-care and prevention
  • Patient organisations and healthcare professionals to raise awareness of the role played by self-care in the prevention of lifestyle related diseases.
  • Healthcare professionals to embrace and advocate for self-care

The current burden imposed by chronic diseases on European healthcare systems is unbearable. There is still time to change the tide, however Europe must quickly transition from a reactive system of acute healthcare and curing of already established diseases, to being proactive in preventing such illnesses.  Self-care, in the form of preventive measures, will play a fundamental role in this change.

The European Health Parliament is a platform of 55 young professionals from across Europe, who are working together over 6 months, with the aim of changing the future of healthcare in Europe. The European Health Parliament is an initiative founded by 5 external partners, Politico, Google, College of Europe, EU40 and Johnson&Johnson. More info at


Contact person: Laurent Louette, Communications Officer,