NEWS: Registration is now open for EHMA Winter School – Managing Digital Innovation

HFE’s Member, EHMA (European Health Management Association) opened the registrations for EHMA 2019 Winter School on the theme of “Managing Digital Innovation in Healthcare”, taking place on 5th – 7th February 2019 in Kloster Eberbach, Germany.

Are you interested in developing your skills in healthcare management?

Do you want to join top-level coaches and peers in interactive discussion on the

digitalisation of healthcare and its implications for management?

Then join the EHMA Winter School!

 

What will you learn?

  • The impact of digital innovation on health workforce and skill-mix by Prof. Dr. Walter Sermeus, KU Leuven Institute for Healthcare Policy, Belgium
  • A new approach to developing Healthcare Leaders – Taking a global perspective whilst retaining regional and local practice by Dr. Stephen Brookes and Dr. Jill McCarthy, University of Manchester, UK
  • Teleneurology – Integrating neurological expertise through digital innovation by Dr. Axel Kaehne, Edge Hill University, UK

Learn more and register by Friday, 25th January here >> bit.ly/2019WinterSchool

NEWS: Health First Europe welcomes COTEC as new member!

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HFE is delighted to welcome the Council of Occupational Therapists for the European Countries (COTEC) as new member.

COTEC was established in 1986 with the purpose of coordinating the views of the National Associations of Occupational Therapy in Europe. The aim of COTEC is to enable National Associations of Occupational Therapists to work together to develop, harmonise and improve standards of professional practice and advance the theory of Occupational Therapy throughout Europe to best address the social and health issues affecting European citizens. COTEC strives to make Occupational Therapy visible, valued, accessible and available for all European citizens by supporting its members and by collaborating on European level.

COTEC is a non-profit organisation which represents 30 European Occupational Therapy Associations and more than 180,000 Occupational Therapists. COTEC is a regional group of the World Federation of Occupational Therapists (WFOT).

Health First Europe is delighted to welcome COTEC as member and looks forward to working together to advance high-quality health and social care across Europe.

NEWS: Today is the World Mental Health Day, time to foster inclusion through innovative hearing care

According to WHO, around 466 million people worldwide have disabling hearing loss and 34 million of these are children. Unaddressed hearing loss poses an annual global cost of US$ 750 billion. Interventions to identify and address hearing loss are cost-effective and can bring great benefit to patients and the whole society.

On the occasion of the World Mental Health Day (10 October 2018), Health First Europe launches the video campaign #TogetherToHear to raise awareness on the burden of untreated hearing loss across Europe and its impact on social exclusion. Hearing loss and ear diseases have significant social and emotional effects. Exclusion from communication can impact on everyday life, causing feelings of loneliness, isolation, and frustration.

Early detection and intervention are crucial to tackle the adverse effects of hearing loss on a child’s development, educational achievements and social participation. Unaddressed hearing loss can lead to cognitive decline (people with mild hearing loss have nearly twice the chance of developing dementia as people without any hearing loss) and depression, due to the lack of social interaction and engagement in society. The Institute of Deafness and Other Communication Disorders revealed that more than 11% of those with hearing loss also had depression, compared to 5% in the general population.

Hear the voice of your European representatives advocating to foster inclusion through innovative hearing care. MEP Renate Sommer, Anne-Sophie Parent (Secretary General at AGE Platform) – Shelly Chadha (WHO programme for prevention of deafness and hearing loss) and Teresa Amat (President EURO-CIU) join their voices to raise awareness on hearing loss impact and the role of innovative technologies in better managing this condition.

 

Watch the video campaign #TogetherToHear

 

NEWS: WHO calls for action to stem the rise in hearing loss

Some 900 million people could suffer from disabling hearing loss by 2050, according to new estimates released by the World Health Organization on the occasion of World Hearing Day on 3 March.

Currently 466 million people worldwide suffer from disabling hearing loss, 34 million of whom are children. This is up from 360 million people five years ago.

The main reasons for this increase is a growing ageing population and the persistence of risks such as ear and vaccine-preventable infections like measles, mumps and rubella; the use of medicines that can harm hearing such as those used to treat drug-resistant tuberculosis and malaria; and exposure to loud sounds through personal audio devices and in entertainment venues and workplaces.

“Past trends and future projections predict a vast increase in the number of people with hearing loss,” says Dr Etienne Krug, Director of the WHO Department for Management of Noncommunicable Diseases, Disability, Violence and Injury Prevention. “Unless appropriate action is initiated, nearly one in 10 people could have disabling hearing loss by 2050. This will considerably affect their lives and pose a significant cost to health systems. Governments must act now to prevent this rise and ensure people with hearing loss can access the services and technologies they need.”

Disabling hearing loss affects people in many ways. It impacts on a person’s ability to communicate, socialize, learn, work and enjoy life, contributing to poverty, social isolation and feelings of loneliness. In older people in particular, hearing loss is linked to cognitive decline, increasing the risk of depression and dementia. Unaddressed hearing loss costs countries an estimated US$ 750 billion annually in direct health costs and loss of productivity.

Interventions can reduce hearing loss and its adverse impacts

Overall it is suggested that half of all cases of hearing loss can be prevented; in children, this figure is around 60%. This includes by immunizing children against infectious diseases; screening and treating children who suffer from chronic ear infections; promoting safe childbirth to minimize the risk of asphyxia and neonatal infections associated with hearing loss; avoiding the use of particular drugs harmful to hearing; controlling exposure to loud sounds in occupational and recreational settings; and raising awareness about healthy ear care practices through public health campaigns.

Detecting and intervening early when people do have hearing loss helps to minimize the consequences, especially for children. This is achieved through screening programmes. In cases where hearing loss is unavoidable, it is vital to ensure access to appropriate and affordable assistive technologies such as hearing aids and surgically implanted electronic cochlear implants, and communication services like speech therapy, sign language and captioning.

Governments and partners have a key role to play

To stem the rise in disabling hearing loss, WHO supports governments and their partners to:

  • Integrate ear and hearing care into primary health care systems as part of universal health coverage;
  • Raise awareness among the public about the prevention of hearing loss;
  • Ensure services to treat hearing loss, including access to assistive technologies and communication services;
  • Train hearing care professionals;
  • Regulate sound exposure on personal audio devices and in entertainment venues and workplaces;
  • Empower people with hearing loss to overcome stigma and discrimination.

WHO has also initiated development of a global report and related toolkit on hearing, to provide authoritative evidence on the magnitude of hearing loss globally, as well as its prevention, treatment and rehabilitation.

Press release and more information available at WHO website 

NEWS: The Coalition on Hearing loss and Disability launches its Manifesto

The Coalition on Hearing loss and Disability demands concrete actions to tackle hearing loss and improve access to hearing technologies

“Innovative hearing devices, such as cochlear implants, can make a real change in the lives of people with severe hearing loss. We must ensure access to these technologies to overcome any barrier to communication and quality of life”
John Bowis, Health First Europe Honorary President

Health First Europe, the European Federation of Hard of Hearing People (EFHOH), the European Association of Hearing Aid Professionals (AEA), AGE Platform Europe, Euro CIU, the European Hearing Instrument Manufacturers Association (EHIMA), the Ear Foundation and the International Federation of ORL Societies (IFOS) join hands to promote actions to tackle the impacts of hearing loss and improve access to hearing devices.

Our Coalition aims to raise awareness among European policy-makers on the social and economic impact of hearing loss and, therefore, to facilitate the adoption of “ad-hoc” effective policies. For this purpose, today the Coalition presents for the first time the Manifesto on Hearing Loss and Disability: throughout its calls for action, we want to protect the participation of people with hearing loss in their communities as well as stress the need to develop a concrete strategy for hearing care into primary health care system.

In Europe 10% of the total population (52 million people) self-report to experience hearing loss, 73% consult a medical professional, but only 50% are referred to hearing care professionals.

Mark Laureyns, AEA President, remarks that “Hearing loss is a huge problem for the health of Europe’s citizens: this disability puts huge pressure on Europe’s social care systems if left untreated. It is time to act to improve access to innovative hearing technologies and professional hearing care!”

“Together we have produced the Manifesto to ensure that the needs of persons with hearing loss are at the heart of public policies: EU institutions are called to take the lead in ensuring that access to professional hearing care is a right and to develop a European strategy on hearing loss focused on equality, prevention and rehabilitation”, said Marcel Bobeldijk, EFHOH President.

“As Europe’s population ages, the burden of hearing loss will increase. We must act to protect older people’s rights and promote their participation in society!” Anne-Sophie Parent, Sec. Gen. AGE Platform Europe.

Teresa Amat, Euro-CIU President, commented “in line with the principles of the U.N. Convention on the Rights of Persons with Disabilities, the EU should take the lead in ensuring access specify our collective to assistive technologies such as cochlear implants and enhancing participation and inclusion to our group as citizens with full rights in our society”.

You can download the Manifesto and read our calls for action here.

We welcome anyone who supports our goals to promote the Manifesto and to spread our message! Follow our campaign on Twitter and LinkedIn 👂

For more information, please contact: info@healthfirsteurope.org

NEWS: UEHP FACTBOOK – “Private Hospitals in Europe”

On 7 November 2017, HFE joined the conference organised by the European Union of Private Hospitals (UEHP), and hosted by MEP Françoise Grossetête (Vice Chair of the European People’s Party Group) in the European Parliament. This event has been the occasion to officially launch the first edition of the Factbook “Private Hospitals in Europe: Supporting Sustainable Health Systems”, a very comprehensive report authored by Mr Hans Martens, European health expert, which reflects on the place of private hospitals in an evolving Europe of 28 member states.

As highlighted in the very first pages of the report, although Europe’s health systems have common features such as an aspiration to universal coverage and equal access, they are organised in very different ways. Consequently, it has become considerably more difficult to compare system performance across European borders and learn from each other’s best practices. The meeting in which HFE took part served as a learning experience and valuable starting point to reflect more on the current system and future challenges.

As emphasized by Mr Gabriele Pelissero, President of AIOP Italy, private sector combines a positive attitude towards innovation with a strong managerial efficiency. Here comes the need to give space to it in systems where it does not exist yet and to develop more into systems where it already provides its services.

Even though a significant decrease in hospital beds is observed in several EU member states (and OECD), the hospital private sector has increased from 17,56% to 20,45% of total EU beds (from 2007 to 2015) as a 16% progression in a global contracting market. Subsequently, a major challenge lies in the modernization of the provision of healthcare services, including innovation and necessary investment while respecting the strict budgetary constraints of the health systems in each country (Factbook).

The system urges reforms, as pointed out by Mr Hans Martens, author of the study. Sustainability is at the core of the debate. There is clear evidence that inequalities are widely spread across Europe, in terms of money and knowledge. In parallel, there is low awareness on how such inequalities are generated. Private hospitals in Europe do not create inequality, as the payer is generally using the same public health system that provides access to the public hospitals. Inequality is created by the financing system, how payments are made.

Private hospitals, in close collaboration with public hospitals, can offer more choice for patients and shorter waiting times for illnesses, and in many cases provide same or better quality of results than public hospitals for less money. It is thus essential that the system treats private and public hospitals in the same way, on a parity basis, as often underlined during the discussion with stakeholders and public officials, to make European health systems more sustainable and achieve sufficient investment levels to ensure health for all.

Ms Cristina Cartel, UEHP Vice President, called for the development of an integrated, flexible framework where cooperation exists alongside competition as a good incentive for quality.

It is clear that economic and financial pressure will continue to be high in Europe; demographic pressure negatively affects public finances as well as the European welfare state, restricting the investment capacity of the public sector, particularly in health. New models of managing the health sector according to the principles of Value Based Health care (VBHC) may represent the way forward, while exploiting the potential of national health systems, focusing more on patient satisfaction, opening up to higher levels of specialization and transforming repayment systems, ranging from a quantitative approach to quality.

 

Please find the press release below

NEWS: Launch event of the white paper on cancer carers

“It is time to start caring for carers”, MEP Heinz K. Becker

 

On 19th October 2017, HFE joined the launch event of the White Paper on Cancer Carers, organised by the European Cancer Patient Coalition (ECPC) and Eurocarers. Hosted by MEP Heinz K. Becker, the event represented a great opportunity to assess the achievements and shortcomings of the current policy framework with regard to carers and, especially, emphasise their fundamental role for patients, health systems and the whole society.

“I believe in social justice for all, for all generations”, stated MEP Becker (EPP, Austria) as first remark. Cares have numerous responsibilities and need greater attention. They provide 80% of care in Europe but the increasing burden of chronic diseases such as cancer mean that urgent policy action is needed to ensure the sustainability of caregiving. Here comes the imperative to develop a robust policy framework supporting cancer carers, raising awareness on their contribution and vital role, promoting their rights and developing accurate solutions to enhance patient care across Europe.

With populations ageing and cancer prevalence and widespread inequalities increasing worldwide, the White Paper testifies to the relevance of caregiving in patients with cancer and calls for concrete measures to meet carers’ needs.

The sustainability of caregiving depends upon recognition of its value. Across Europe, unpaid family carers and friends are the largest providers of health and social care support. Recognising them provides the Member State with an opportunity to manage the situation of caregiving, rather than be subject to the negative impacts of unsupported caregiving. So far, only twelve Member States have a formal recognition of carers – Austria, Belgium, Denmark, Germany, Finland, France, Ireland, Italy, Luxembourg, the Netherlands, Sweden and the UK -. Gender inequality, the current lack of information and support around cancers, together with the numerous financial and logistical burdens carers experience every day are additional aspects that need to be urgently addressed.

Mr Piet Van Nuffel, Member of the Cabinet of Commissioner Thyssen, emphasised how carers are essential for the whole society for the maintenance of the health system. The European Commission is thus highly committed to develop adequate social and health policies, and support Member States to achieve affordable, sustainable long-term care. In 2016, the Commission introduced the European Pillar of Social Rights, considered as being one of the cornerstones of health and long-term care systems in Europe. As part of the package of initiatives, it has also developed a legislative proposal on Work-Life Balance of Parents and Carer which includes the introduction of 5 days of paid leave for workers caring for a seriously ill or dependent relative.

Carers need flexible work arrangements, appropriate pension rights, training, psychological and financial support, as well as access to public services and national programmes, along with the full inclusion in a patient’s care team. “They are equal members of the care team”, highlighted Ms Charlotte Argyle, Carers Support Programme Manager at MacMillan Cancer Support. In line with this, all tools need to be deployed to develop integrated health and LTC services centered around the needs of the patient and the carer, encouraging the social inclusion and full integration of carers into the healthcare team.

In her closing remarks, MEP Jana Žitňanská (ECR, Slovakia) pointed out that more communication and involvement among health practitioners and policymakers need to exist at both European and national level. A coherent, integrated approach will mainstream caregiving across all major policy areas, and ensure the due recognition of the significant contribution made by carers to our welfare system and the economy. It is thus clear that providing carers with choice and support will ultimately result in giving people with cancer and their carers a proper quality of life.

NEWS: EU proportionality test: Economics vs Health?

On 18th October 2017, Health First Europe attended the meeting hosted by MEP Lieve Wierinck and MEP Peter Liese at the European Parliament. Thanks to the initiative of the Council of European Dentists (CED), the Standing Committee of European Doctors (CPME) and the Pharmaceutical Group of the European Union (PGEU), EU and national stakeholders gathered together to discuss ‘Economics vs Health? An EU Proportionality Test for Health Professions’.

The attendees engaged in dynamic discussion on the European Commission proposal for a Directive on proportionality test before adoption of new regulation of professions, which will have also an impact on the regulation of healthcare professions. Many participants warmly welcomed the Opinion of the ENVI committee, which supports the call for an exemption for health professions from the scope of the future Directive.

The Parliamentary Assistant Mr Remy Petitot, on behalf of MEP Françoise Grossetête, Rapporteur of the Opinion of the ENVI committee, stressed that “healthcare professionals have a public mission to patients (…) and they are already one of the most mobile professions in the European Union”. As it was highlighted by MEP Lieve Wierinck “proportionality is a general principle of EU law and must be respected. No one who has come to the European Parliament today challenges this principle. Instead, we aim to provide answers as to why when assessing proportionality of healthcare professional regulation, we should not use the same principles as for professions that provide services of pure economic interest”.

Irmfried Schwimann, the Deputy Director-General for Internal Market, Industry, Entrepreneurship and SMEs, presented the proposal: she stressed that the future Directive will be linked to the European Professional Qualification Directives and it aims to make more transparent and effective assessments of national rules on professional services.

Overall, the event was a great opportunity to present and discuss stakeholders’ position on this specific dossier. Healthcare professions count around 17 million jobs across the EU (8% of all jobs). It is vital for EU society and all stakeholders to keep on debating and sharing any concerns related to this highly important sector.

NEWS: HFE attends the meeting of the MEPs Interest Group European Patients’ Rights

On 3 May, HFE attended the meeting of the MEPs Interest Group on European Patients’ Rights and Cross-border healthcare focused on “Patients’ Rights have no borders… As well as risks!” to discuss the opportunities and risks of the application of the cross-border healthcare Directive in the European Union.

The idea to encourage a MEPs informal Interest Group on European Patients’ Rights and Cross-border healthcare was launched in May 2015 to fulfil the widespread request from more than 80 civic and patient organizations to the EU Parliament to move towards the institutionalization of the European Patients’ Rights Day as an effective message for European Institutions to put patients’ rights at the forefront of any discussion of healthcare system reform.

The meeting focused on the barriers EU citizens face when looking for medical treatments in another country. As stated by Mariano Votta, Director of Active Citizenship Network, “the biggest barrier is the financial one and as consequence cross border healthcare had only been available to those citizens with the means to afford it.” Furthermore, Mr Votta drew attention to the fact that “there is a need for increasing access to information at a European level, and that every citizen should know the treatment options that are available to them in order to receive the best care possible”. Other obstacles that made patients discard the option of looking for treatment in another European country are represented by language and cultural differences along with fraud and abuse that patients can experience while undertaking treatments abroad. Paul Vincke, Director of the European Healthcare Fraud and Corruption Network, remarked that “a solid cooperation is needed between member states and European Institutions to develop a user friendly communication platform and warning system, which would allow patients to be informed correctly before choosing healthcare services in another EU country”.

To overcome these barriers Mr Aurelien Pérez, Policy Officer within the Unit in charge of Cross border healthcare and eHealth at DG SANTE, described a few initiatives which have been undertaken by the European Commission, such as raising patient awareness on prior authorisation for medical treatment abroad, increasing cooperation between national authorities, and fostering data exchanges and best practices. He emphasised the critical role of the collaboration between the European Commission and European member states in sectors as health technology assessment, rare diseases, creation of European Reference Network and exchange of knowledge. He called on EU member states to strengthen national contact points, and pointed out that “an area that needs to be carefully defined is the process of reimbursements for those who receive healthcare services abroad”. Mr Pérez also drew attention on the fact that some healthcare systems are too complex for citizens that are not nationals of the country in which they are seeking treatment.

In her closing remarks, Ms Sonia Belfiore, Project Manager for the Active Citizenship Network, announced that ACN will soon start an awareness raising campaign in different EU languages to engage in cooperation with governments in a national and local level, and to guarantee that all European citizens are properly informed about their rights to go abroad for care.

NEWS: Healthcare for person with disability – Home and abroad

On 25th January 2017, HFE joined the conference on access to healthcare for persons with disabilities organised by the International Federation for Spina Bifida and Hydrocephalus (IFSBH) in cooperation with the European Patients’ Forum (EPF) and the European Disability Forum (EDF). In this occasion, two reports on “Right to health: reality of persons with Spina Bifida and Hydrocephalus” and “Impact of cross-border healthcare on persons with disabilities and chronic conditions” have been launched, aimed at assessing access to healthcare for persons with disabilities and making concrete recommendations on what still needs to be done..

Both reports show a clear lack of multidisciplinary care for people with complex disabilities, such as spina bifida and hydrocephalus, which limited coverage of mobility devices and continence aids. Moreover, waiting times and limited knowledge are considered the most serious obstacles that European citizens do experience. Despite the Article 25 of the UN Convention on the Rights of Persons with Disabilities which clearly calls on States Parties to recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability, human rights of persons with disabilities and chronic conditions are continuously violated as they struggle to access appropriate and affordable healthcare in their community. According to the report on Right to health: reality of persons with Spina Bifida and Hydrocephalus, only 17% of patients affected by Spina Bifida and Hydrocephalus (SBH) have a multidisciplinary clinic in their area and the 29% find access to care very difficult. The worst case scenario is in Poland, followed by Portugal. Moreover, the financial coverage of treatment and assistive products for patients with SBH is grossly insufficient.

As emphasised by Ms Ruta Udraite (IF Member), persons with SBH need an integrated system to deliver complex multidisciplinary care, where patients can see all the specialists without the need to get various appointments for different specialists at different locations. The existence of multidisciplinary care is a way of prevention of medical complications, costly surgeries, negative attitudes and stigmas. It may also impact people’s satisfaction with the care they receive.

What also needs to be tackled is the low use and low awareness across Europe on the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare. As highlighted by IF research findings, the 85% of the European population has never used cross-border healthcare. Provision of healthcare is and should be considered by all EU Member States as an area of shared competences. Therefore, more involvement of representative organisations together with a wider EU guidance on the National Contact Points are crucial to enhance the impact of EU legislation on patients with disabilities and chronic conditions in all European countries.

In line with this, Mr Laurent Louette, Communications Officer at the European Patients’ Forum (EPF), introduced the audience to the new campaign on access to healthcare entitled ‘Universal health coverage for all’, aimed at raising awareness and contributing to make the access to care a reality for EU patients by 2030.

MEP Nessa Childers (S&D, Ireland) pointed out that there are 8 million people with disabilities across Europe and much more actions need to exist to meet the needs of vulnerable groups. Financial burden of medical tourism, lack of information as well as a language barrier have all been invoked as reasons for not seeking care in another EU Member States. EU policy makers need to urgently tackle the lack of EU-level measures to ban discrimination against persons with disabilities in access to health and analyse the impact of its cross-border healthcare legislation on patients with disabilities.

Mr Martin Rutherfurd, legal officer at the Directorate on Cross border healthcare and eHealth at DG SANTE, highlighted “How the cross-border Directive represent both a codification of jurisprudence and a new set of legislation”. However, people also need to bear in mind other social security regulations while seeking treatment abroad.

‘Disability knows no borders, no boundaries; it’s time to streamline what EU does’, said MEP Diane Dodds (UK) in her closing remarks. Much more communication, involvement and coherence among health practitioners and teams need to exist. A multidisciplinary approach along with a major awareness on the Directive on cross border healthcare will positively impact people’s lives, by developing more accessible and sustainable health services, and making all citizens with disabilities fully exercise their right to health both home and abroad.

NEWS: Don’t Brexit on rare disease patients – The case of primary immunodeficiencies

On Tuesday 24th January 2017, Health First Europe attended the 8th PID FORUM organised by the International Patient Organisation for Primary Immunodeficiencies (IPOPI) in the European Parliament to discuss the impact of Brexit on patients affected by rare diseases in both the EU and UK.

As highlighted by MEP Seb Dance (S&D, UK) in his introductory notes, Brexit symbolises the withdrawal of a key Member States in Europe that has and will have inevitable impact in many areas, especially in the healthcare sector. Over time, ‘the United Kingdom has developed an advanced level of medical research which has made positively outcomes for patients and job seekers. This does not have to be lost in two years of negotiations’, pointed out MEP Dance. On the contrary, networks are important and need to be strengthened among EU Member States, sharing new recommendations and practices.

In line with this, MEP Zorrinho (S&D, Portugal) declared that it is the right time to reinforce connections across Europe, dealing with citizens’ rights and being aware of correct priorities to guarantee the best assessment of treatment and care.

Mr Johan Prevot, Executive Director at IPOPI, shared a comprehensive presentation on what primary immunodefinciencies are and how the European Union supports them, favouring mobility and supporting developments of rare diseases’ plans. IPOPI is highly committed to raise awareness on this matter and influence the reality after Brexit. In this regard, a new set of recommendations both in the UK and EU will be developed and launched soon to support future discussions and ensure that PID care does not suffer from the Brexit.

Dr Siobhan Burns, Reader and Consultant in Immunology, presented his work at the University College London Centre for Immunodeficiency where multicenter trials are conducted for gene therapy for PIDs. Gene therapy has been supported by EU funding for the past 15 years. Here comes the need to keep the focus and ensure the UK participation in the H2020 Framework Programme. According to the British perspective, the challenges of Brexit are numerous, such as the access to clinical trials for patients, the disruption to current academic collaborations and networks, the lost opportunities for training doctors and the impact on recruitment for patients. Furthermore, the level of uncertainty, the increase of medication costs and employment difficulties for EU nationals are additional political challenges that may result from Brexit, as stated by Ms Sarita Workman, specialist sister in Immunologic Research at the Royal Free Hospital.

For all these aforementioned reasons, health care agreements need to be maintained to ensure the best quality of care for patients. More investment in cross-border healthcare along with more cooperation and sharing of best practices are key elements to strengthen the collaboration between health practitioners and policymakers. As underlined by Ms Susana Lopes da Silva, doctor at the Hospital Lusíadas in Lisboa, education and networking are crucial elements to maintain the bonds with the UK for the best interest of patients.

While it is clear that ‘Brexit will lead to market and currency fluctuations and will have an impact on patient community’, as stated Ms Amanda Box, CEO at the European Haemophilia Consortium (EHC), it is time to reinforce solidarity and community in shaping the upcoming agenda on Primary Immunodeficiencies at EU level. In this frame, as a basis for further Brexit discussions and future negotiations, new recommendations will be developed, sent to several MEPs and shared with different interested parties.

NEWS: Community care – centerpiece of health policies

Brussels, 3 June 2015 – Today the Latvian Presidency in collaboration with Health First Europe encourages supporting and investing in the development of policies to improve care for patients specifically in community settings. Launching the “Declaration for Making Patient – Centered Community Care a Reality,” the Latvian Presidency promotes the importance of patient-centered care for all citizens in Europe.

The declaration encourages all stakeholders to focus on supporting Member States to:

  • Increase preventive care in the community
  • Facilitate access to innovation for patients in the community setting
  • Support training of healthcare professionals in the community
  • Promote integrated care across all points of patient care
  • Strengthen the governance of integrated care

Launching the declaration, Secretary of State of the Ministry of Health Ms. Solvita Zvidriņa remarked:

“EU has an important role to play in supporting Member States to implement better and smarter healthcare policies that put the patient at the center of care in all settings. Promoting quality and better care in the community and smarter use of healthcare services will help to ensure greater health and wealth for all in Europe.”

To ensure genuine shifts away from treatment-driven systems towards preventive care, policy frameworks on community care at EU level should be implemented that would help to enable citizens, carers and innovation to work together towards a common goal of citizen well-being.

To read the Declaration, click here.

For further details, please contact:

Amanda Massey

Executive Director

info@healthfirsteurope.org

+32 (0)2 626 1999

NEWS: Health First Europe attends the 9th European Patients’ Rights Day

On 12 May, HFE attended the 9th European Patients’ Rights dedicated to sustainability of healthcare systems with a specific focus on the burned of chronic diseases. Organised by the Active Citizenship Network (ACN), the 9th edition of the European Patients’ Rights Day represented a moment to reflect and discuss on the current state of the European Charter of Patients’ rights launched in 2003 and to outline the future ACN actions particularly the establishment of a European Parliamentary interest group on European Patients’ Rights and Cross-Border Healthcare.

Active Citizenship Network is an umbrella association of about 100 civic organizations from 30 countries aimed towards developing an European Active citizenship. In 2013, ACN launched the European Charter of Patients’ Rights to guarantee a “high level of human health protection” (Article 35 of the Charter of Fundamental Rights of the European Union) and to assure the high quality of services provided by the various national health services in Europe.

The 9th European Patients’ Rights Day Primary brought together patients organizations, health professionals, the European Commission and representatives of the European Parliament to reflect on the role and the responsibilities of policymakers and health stakeholders to make healthcare systems sustainable and efficient, and to create an integrated approach able to balance cost reduction, social equity and quality of care.

MEP Borrelli (EFDD, IT) and MEP Pittella (S&D President, IT) who supported the event, engaged themselves as members of new EP Interest Group on European Patients’ Rights and Cross-Border Healthcare and pointed out that patients’ rights, as stated in the Charter, are non-negotiable and universal values to be guaranteed to all the European citizens.

Mr Martin Seychell, Deputy Director General for Consumers and Health at DG Santé gave a broad overview of the key figures on the challenges of chronic diseases and patients’ rights in the framework of EU. The European Commission approach on chronic diseases is at the same time holistic, in the sense that main chronic diseases’ problem can be tackled in same way, and specific as the treatment of chronic disease might require personalised care to meet patients ‘needs. He announced that the Commission is currently working on a report on patients ‘rights in the European Member States to be published in October.

The 2 panels discussed the role of different actors in developing sustainable healthcare systems and the role of prevention and innovation in sustainable healthcare systems. The first panel reflected on how to avoid further infringements on patients’ rights due to indiscriminate national budget reductions which, in some cases, have turned the right to the right treatment and dignity for chronic patients into a privilege. In order to tackle this problem, the European Commission is currently assessing national healthcare systems to propose and provide social equitable solutions for reform. As stated by MEP Pedinici, “We cannot change the current economic situation, but we can reduce the cost connected to bad management and the waste of resources”. The second panel focused on the research of more effective and smarter approaches to the prevention and treatment of chronic diseases and to the preservation of “life with dignity” for patients. Innovation remain a critical element of all healthcare reforms.

In his closing remarks, Mr. Mariano Motta, Director of Active Citizenship Network, stated that the “sustainability of healthcare systems is a common good to be safeguarded, but protection of patients’ rights should not be overlooked.” Therefore, he called for the institutionalization of the European Patients’ Rights Day as an effective message for European Institutions to put patients’ rights at the forefront of any discussion of healthcare system reform.

NEWS: Health First Europe attends the 5th Primary Immunodeficiencies Forum

On 4 November, HFE attended the 5th Primary Immunodeficiencies (PID) Forum organised by International Patient Organisation for Primary Immunodeficiencies (IPOPI). Chaired by MEP Dr. Cristian Busoi (EPP, RO) and MEP Dr. Boleslaw Piecha (ECR, PL) the meeting reflected on the development of a comprehensive framework of care and policy to deal with PIDs at the European level.

PIDs represent a group of more than 250 genetic rare disorders which affect the human immunity system. IPOPI is the Association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency (PID) patients worldwide.

The 5th Primary Immunodeficiencies Forum brought together patients, health professionals, patient organizations, representatives of the European Parliament, the European Commission, and industry to hold a debate on the challenges facing patients with PIDs in Europe and define a common and concrete pathway to better address PIDs.

Mr. Johan Prévot, Executive Director of IPOPI, gave a broad overview of the definition of PIDs and patients’ needs. He pointed out the urgency to have a comprehensive framework for PIDs, “there is a need for a macro-social approach for these conditions” and he suggested building a bridge between policy and care. He reminded participants how early diagnosis can insure a very high quality of life to PIDs patients, but unfortunately PIDs are not easily to diagnose and in the European Member States there is poor knowledge of these conditions.

Given the specificity and need of access to the most modern technologies to treat these diseases, he also remarked on the crucial role of innovation and research to treat these diseases. Genetic screening, newborn screening and genetic therapies can facilitate early diagnosis and improve patients’ quality of life and the development of an efficient and well organized European Health Technology Assessment system is a priority.

Dr Mahlaoui as a doctor specialised in PIDs identified the main medical challenges of PDIs in evaluating outcomes of new research on therapies, improving treatments and care, creating an European register to measure therapy improvement and outcomes, establishing an European Reference Network of highly specialised healthcare providers which represents a clear added value for the European Union and will help to provide affordable, high-quality and cost-effective healthcare to patients with conditions requiring a particular concentration of resources or expertise.

Finally, Ms. Jose Drabwell gave an overview of the PIDs at the international level. She emphasized the unacceptable difference of treatments between continents, countries and hospitals in the same city. Based on her professional and personal experience, she stressed the economic burden of PIDS for the national health systems. In her opinion the situation can improve only developing and incentivising the already existing home therapies, which might represent an improvement in patients` life and cost reduction for the national economies.

In the closing remarks, the chairs MEP Dr. Cristian Busoi (EPP, RO) and MEP Dr. Boleslaw Piecha (ECR, PL)MEPs offer their time and their support to keep working on PIDs and pushing for European legislation which puts patients’ interest at the centre.