REPORT - PACTeupatientaccess.eu/fls/PACT_report_Feb20.pdf · REPORT EU collaboration in health for better access: Taking stock and looking to the future Andrey Kovatchev Biljana Borzan

REPORT

EU collaboration in health forbetter access: Taking stockand looking to the future

Andrey KovatchevBiljana BorzanCristian-Silviu BuşoiKarin KadenbachKateřina KonečnaLieve Wierinick

Hosted by:

Wednesday

20 February

15.00 - 19.00

European Parliament

Room 6Q1

EU collaboration in health for better access:Taking stock and looking to the future

Welcoming participants, Susanna Palkonen (Chairperson, Patient Access Partnership (PACT)) underlined the importance of the event, bringing many stakeholders together and looking at the future of health policy at EU level. According to a recent Eurobarometer survey, 70% of Europeans would like to see more EU cooperation in the field of health1. Given current concerns about the political ‘rollback’ of EU involvement in health after the European elections, and the next Multiannual Financial Framework 2021-2027 (MFF, EU budget for the future), it is crucial to advocate so health is a priority topic for the EU. Against this backdrop, this meeting is the first of a series of events planned by PACT in 2019 (elections year). While it is true that health systems are mainly within the competence of the Member States (MS), the EU has an important role to play in bringing all players together, address common challenges, setting up guidelines and facilitate the exchange of good practice and expertise. There are huge differences between and within MS in terms of access to healthcare, and cooperation will help address these.

1 http://www.europarl.europa.eu/pdf/eurobarometre/2018/oneyearbefore2019/eb89_one_year_before_2019_eurobarometer_en_opt.pdf

©European Union 2019 – EP/photographer

http://www.europarl.europa.eu/pdf/eurobarometre/2018/oneyearbefore2019/eb89_one_year_before_2019_eurobarometer_en_opt.pdf


Keynote speaker Anne Bucher (Director General DG SANTE, European Commission) provided an optimistic outlook with respect to the Commission’s achievements and future plans in the field of health. She stated that access to healthcare is a right; all humans are entitled to healthcare and it is a political responsibility deriving from the solidarity inherent in EU membership. Apart from that, a healthy population is an economic necessity as well. Health is a core European value enshrined in the EU Treaty; it is also an explicit part of the European Pillar of Social Rights and very much part of the debates surrounding the Sustainable Development Goals. Goal number 3 refers to achieving Universal Access to Health (UAH) by 2030; however, health inequalities across and within MS are still striking.

Ms Bucher stated that the Commission has made an effort to act on a number of issues related to access to healthcare at two different levels: the first related to increased cooperation with the MS, the second to generating more information to increase understanding and awareness of policy makers.

With respect to the first, the European Semester is playing an important role; reform priorities have provided a good framework to bring about change, focusing on accessibility, sustainability and resilience of health care systems. Results are visible, such as reduction in waiting times (Latvia and Malta), reduced out-of-pocket (OOP) expenses (Lithuania) and



expanding entitlement of access to healthcare for the whole population (Cyprus). Concrete change is facilitated by the use of the European Structural and Investment Funds (ESIF) and complemented by the “State of Health in the EU” cycle which helps to identify strengths, weaknesses and best practices; the combination of practical political recommendations for reform, supported by funding has worked well; synergy between policy and financing instruments is proving to be effective. In order to increase dialogue and coordination, the Commission has also set up the Steering Group on Health Promotion and Disease Prevention, where representatives of national health Ministries meet and select the topics they want to address. This is linked to a ‘Best Practice Portal’ where discussions with the wider health community are taking place, resulting in a more intense dialogue on required changes.

This increased policy dialogue has been supported by analytical work, for instance the ‘State of Health in the EU’ initiative, which has generated useful comparative information. In terms of health promotion and prevention the Commission is focusing on concretely improving access to vaccinations. At the end of last year, the Council adopted the Commission’s proposal for a Recommendation on strengthened cooperation against vaccine-preventable diseases.

Another example is the proposed HTA Regulation which is currently being discussed by the co-legislators. This can lead to a better and more efficient use of resources, and would have a direct link to access to medicines and care.

Another example of Commission action on healthcare access is the Directive 2011/24/EU on patients’ rights in cross-border healthcare. The focus in this mandate has been on the transposition and implementation of this important piece of legislation; progress has been made, particularly with respect to the creation of the European Reference Networks (ERNs) which virtually link experts and care providers in highly specialised healthcare units across the EU. The aim is to improve diagnosis, treatment and outcomes for patients with rare diseases by making the expertise travel to the patient and not vice-versa. Furthermore, the Commission has worked in the emerging field of digital health, publishing a communication and a recommendation to securely share Electronic Health Records (EHR) across Europe focusing on the development of systems which empower citizens and help countries to exchange patient data. The infrastructure is difficult and complicated but small steps forward are being made.

With respect to the new MFF, Ms Bucher emphasised that a significant investment for work in the area of health has been secured. Even if there will be no increase in the volume of financing, there will be more synergy between existing instruments e.g. the ESIF, the Health Programme and ESF+, InvestEU and the digital Europe programme. There will also be more synergy between national health programmes and EU Action on Health health and healthcare feature quite prominently in Horizon Europe (HE) .

Ms Bucher concluded by recognising the demand from EU citizens for the EU level to do more in the area of health and underlining her confidence in the Commission’s ability to respond, building on its achievements to date.


Introduction panel: Universal access to health care and access through inclusion

The first speaker, Ann-Isabelle Von Lingen (Policy Officer, European AIDS Treatment Group) stated that we have the tools and the experience to eliminate of HIV as a public threat. The reduction in the number of newly reported cases in some European cities show that it is feasible. Yet in 2017, there were 160.000 new HIV diagnoses in the European region (ECDC-WHO data) out of which 25.000 are in the EU/EEA area. 53% of persons diagnosed were at advanced stages of infection. Moreover, HIV disproportionally affects stigmatised groups and with the expansion of the epidemic in the Central and Eastern European region (80% of new HIV cases), hepatitis and tuberculosis are common among people living with HIV.

It is clear that a lot remains to be done, such as addressing the persistent stigma and discrimination of people living with HIV, the restrictive regulations and punishing laws pushing communities to the margins, discriminatory practices and lack of resources barring access to prevention services/programmes, testing, treatment and care, as well as quality of life. Harm reduction and other combined prevention programmes are not at scale needed. Clearly, the SDGs commitment to make HIV (and TB and viral hepatitis) history as a major public health threat and leave no one behind in Europe is not yet becoming a reality. The Commission’s recent reflection paper on the SGDs is very disappointing in this respect.



Ms Von Lingen made the case for European collaboration on HIV: in the past, this has galvanised action across governments and private health, civil society sectors by giving political profile to the epidemic. It has also promoted strategic approaches focusing on key populations and locations facing significant challenges. Moreover, it has fostered evidence and rights- based policies and civil society involvement in policy development.

The benefits of EU cooperation are obvious; health therefore should be positioned as a political project for the EU, with – inter alia - a focus on the social aspects of development (reducing inequalities, sustainable health systems), a budgeted action plan reflecting the SDGs targets, coordination with MS and agencies (also beyond the EU), coherence and coordination between EU policies and actions and international collaboration. Furthermore, it should advance prevention, outreach, decentralised services and integration, always involving the communities affected. It should support evidence and rights- based policies, strengthen epidemiological

surveillance, and address the funding gap. Finally, a sound indicator should be set, aligned with the goal of elimination of HIV, viral hepatitis and tuberculosis

The second speaker, Dorota Sienkiewicz (Policy Coordinator, EuroHealthNet) stated that large inequalities in health status and (healthy) life expectancy continue to exist across population groups and within EU countries, both by gender and socio-economic status. These are linked to many factors, including differences in exposure to health risk factors and in access to health care. Most EU countries have endorsed, as major policy objectives, the reduction of inequalities in health status and the principle of equal access to health care based on need.

According to the 2014 Commission Communication on effective, accessible and resilient health systems, access to healthcare must address the levels of resources being invested in a health system in terms of population coverage. Other crucial elements relate to affordability of healthcare, costs to users (cost-sharing and OOP) and the basket of care and availability of/proximity to care (distance, waiting times). In addition, account should be taken of issues related to discrimination and stigmatisation at the point of care, levels of health literacy and people’s capacity to cope and recover (community/networks support).


UAH and timely access to affordable, preventive and curative health care (a key principle of the European Pillar of Social Rights) should remain central to policy action. However, UAH alone may not suffice: despite the fact that health care coverage is (nearly) universal in many European welfare states, the distribution of access/resources still varies by social group.

Access to health and equitable health distribution can be affected/modifiable to a great degree by public policy beyond the health system — including by policies related to income protection, education, employment and costs of other basic services, goods, and transport. Good examples of EU level action include the European Pillar of Social Rights and its accompanying Scoreboard, the healthcare strand of the EU Social Open Method of Coordination and the European Semester Process.

As for the future, Ms Sienkiewicz noted that the budget post-2020 envisages greater links between various current instruments. However, to ensure a Health in All Policies/Health in All Funds approach, strong collaboration and coherence mechanisms will be required. Finally, Ms Sienkiewicz underlined that the future, also in health care provision, is digital; the digital transformation of health and society can be seen both as an opportunity and a threat if not distributed equally.


Elisabeth Kasilingam (Managing Director, European Multiple Sclerosis Platform (EMSP)) closed the introductory session by briefly introducing her organisation, underlining its main focus on advocacy and awareness-raising campaigns. Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. To this date, there is no cure for MS.


EMSP is a pan-umbrella organisation of MS societies which gathers and provides knowledge and expertise to relevant stakeholders impacting on the lives of people affected by MS. It encourages high quality research and the dissemination of high-standard, evidence-based information to influence positive decision making. EMSP’s flagship projects aim to improve quality of life of people with MS as well as access - to healthcare, to employment -to ensure that they receive high quality equitable care and are enabled to remain active in society.

Ms Kasilingam described EMSP’s various flagship projects and focused specifically on the MS Barometer 2015, which is a comparative survey of the national situation in up to 28 European countries. Data are collected by the national MS societies; it is a benchmarking tool outlining the disease management in different countries, highlighting the gaps and areas for improvement. This tool allows national MS societies to influence decision-makers on the identified areas of concerns. The comparative survey also allows the identification of best practices to make recommendations in countries of same socio-economic level.

The latest edition includes a comparison between the results deriving from the two clusters of Western and Eastern European countries, compared with the data obtained in 2013, outlining developments. The Barometer focuses on four main priority areas: access to treatment and care, research and data collection, employment for young people and patient empowerment. The findings reveal an urgent need to improve access to early diagnosis, personalised treatment and multidisciplinary care. These goals can be met through increasing the number of healthcare professionals specialised in MS, encouraging sustained collaboration between health care professionals, access to and systematic evaluation of innovative medical technologies (from diagnosis devices to therapies), and providing support for carers. It also highlights the need for more public funding to boost MS research and data collection and the need to enable young people with MS to complete their studies, steer clear of social isolation and achieve good quality employment. Patients should be included in the policies and practices that affect them. Lastly, Ms Kasilingam called for better, real-world evidence data, which can support better health outcomes.

Panel discussion: What have we achieved in improving equal access to quality healthcare?

Moderator Nicola Bedlington (Secretary General, European Patients’ Forum) introduced the session as an opportunity to reflect on the work of PACT during the past few years in putting access to healthcare in the focus of health policies at EU and international level. This work can serve as a basis for the agenda of the next mandate of the MEP Interest Group on Access (MEP IG) following the 2019 EU elections. She recalled that many efforts have been made by the current MEP IG, with meetings on topics such as the access dimension of the European Semester Process and the Country Specific Recommendations, the Commission’s ‘Health at a Glance’ report, the proposed HTA Directive and others. The MEP IG was also instrumental in creating a pilot project to develop an access measuring instrument, with the support of


the European Commission (EC). Ms Bedlington reminded the audience of PACT’s 5 A’s in relation to access to healthcare – Availability, Affordability, Accessibility, Appropriateness and Adequacy.

Lieve Wierinck MEP (ALDE, Belgium) described herself as a patient, caregiver and politician – which is why she joined the MEP IG. From her own experience she is aware that some medicines, not even the most innovative or costly ones, are not widely available across the EU. This is unacceptable as every patient has the right to the best care. She warmly welcomed the creation of the ERNs (as part of the Cross-border Directive) as a real and very positive achievement by the Commission - the pooling of knowledge and expertise for the benefit of people affected by rare disorders is a major step forward in terms of better access. This is a concrete example of the EU’s added value. The free movement of health professionals is another good example; gathering knowledge abroad and sharing it with other health care professionals upon return can only benefit patients. Regarding sharing knowledge across MS, Ms Wierinck would welcome the creation of what she would call ‘ERASMUS Med’ for healthcare professionals.

Sylvain Giraud (Head of Unit Performance of National Health Systems, DG SANTE, European Commission) began his contribution by highlighting the importance of PACT as organization and recalling his support to it from its creation. He then proceeded to inform the audience of the three different levels where progress has been made in terms of EU policies on access to healthcare. The first relates to linking access to health care to the broader EU policy agenda: the Semester Process now analyses access-related issues in a more systematic way and the 2014 Communication – on effective, accessible and resilient, health systems - remains the basis for the Commission’s approach. A second level where progress was made relates to the increased visibility of this topic by measuring and knowledge brokering. The Commission’s “State of Health in the EU” and other publications have helped put this issue in the public eye. Also, the framework for measuring access, developed within the pilot project with the European Parliament support, will support the gathering of evidence-based information. A third level


supports the transformation of health care systems to make them more accessible. Solidarity is an important EU-level value, and while it is the responsibility of the MS to organise their health care systems, they all subscribe to the principle of accessibility. While UAH is largely a reality across the EU, access issues remain. Therefore the Commission proposes to work on improving the situation by means of joint actions, the Health Programmes, knowledge sharing, the work of the Expert Panel on Better Ways of Investing in health and structural support by means of the ESIF, which will finance projects on a number of themes. The interventions financed by the ESIF are an expression of concrete EU support without interfering with the principle of subsidiarity.

Asked upon what he would like the Commission to achieve by 2025, Mr Giraud replied that many of the ongoing activities are ‘part of the DNA’ of the Commission and the Commission will continue to deliver to meet the expectations of citizens, who indeed call for continuation of actions on health at European level. This can happen through development of common policies and cooperation mechanisms and through the analysis of what that means for healthcare, as well as for the functioning of the internal market and free movement of patients, healthcare professionals and products. Health is part of addressing macro-economic coordination with all the important considerations on sustainability of public finances, implications of demographic ageing etc. The Commission will continue to provide information in a standardised and comprehensive way.

Stefan Staicu (Health Attaché, Romania) underlined that efforts have been made to improve access and provided examples of positive EU level action, e.g. the current Health Programme, initiatives on pharmaceutical products, the Medical Devices Regulations as well as a number of relevant Council Conclusion (e.g. on patient safety (2016), strengthened cooperation (2018) and European Parliament reports (e.g. on AMR(2018)). However, much remains to be done, including the implementation of existing access initiatives.



The 2011/24/EU directive directly refers to healthcare and is a positive example of legislation that benefits patients; it has also had positive results for rare disorders and e-health, and the current proposed HTA Regulation also stems from this piece of legislation. However, citizens are not sufficiently aware of the rights granted by this Directive. Which is why the Romanian Presidency is planning an Informal meeting of Health ministers (Bucharest, 14-15th of April) to address concrete achievements in the area and identify where is lagging behind. Access will be widely addressed in the context of patients’ mobility with rare diseases under 18 years old and in the framework of the Directive but also with regards to effective ways to improve patients’ access to medicines.

Mr Staicu underlined that the Romanian Presidency intends to focus on health from the UAH perspective. The Presidency programme contains a number of events related to this theme, such as the June e-health Digital Week, which will look at the access of patients to digital health care services. There will be a meeting of governmental experts on vaccination coverage improvement and vaccine hesitancy. Patient safety in primary care and vaccination will also be addressed at the Public health Working Party at senior level. A meeting of CMO/CNO/CDO will also be organised with regards to patient’s safety from the medical profession’s perspective. Last but not least, there will be a seminar of Governmental experts on exchange of best practices for early detection and cancer screening.

While the delivery of healthcare services remains the competence of the MS, the EU can and should complement actions at national level to ensure consistent and equal access for all citizens. The EU compares well with the rest of the world; however, there still are many differences in terms of access and equality.

Responding to questions, Mr Staicu highlighted that Romania has indeed benefitted from EU action on innovative medicines - many medicines have been added to the list for reimbursement. This is an example where EU-level action has made a difference. However, there are 28 different healthcare systems in the EU, interacting with stakeholders in different ways. There is no “one size fits all” solution and differences in access will probably exist as long as systems are different.

Panel discussion: What are the future priorities towards better access to healthcare for patients?

Moderator Stanimir Hasardzhiev (Secretary General, PACT) briefly introduced the session, intended for participants to discuss the key priority areas for cooperation in health, based on lessons learned and past achievements; the discussion will inform the agenda of the MEP IG on its new mandate following the 2019 EU elections.

Karin Kadenbach MEP (S&D, Austria) underlined that she has witnessed a shift in focus during her two terms of office as a MEP. At the start of her mandate 9 years ago the focus was on health and environment as crucial topics for all citizens. Over the years, this focus has changed to more social questions, relating to jobs and income security. The financial


aspects have become the main preoccupation of political positions. This shift needs to be reversed: we need to focus on what can be done about health issues. Discussions should be about prevention, health promotion, diagnosis, treatment, cure and care rather than focus on the EU internal market.

Elizabeth Kuiper (Executive Director Public Affairs, EFPIA) also speaking on behalf of COGIR, EUCOPE, MedTech and Medicines for Europe, stated that multi-stakeholder cooperation is needed across the EU to ensure that patients have access to high-quality and affordable medicines. PACT was set up with this aim at the start of the current Parliament and Commission term and EFPIA and other industry associations have strongly supported this initiative from the start.

Current discussions on HE highlight how science is changing and how patients are benefitting; public private partnerships – like the IMI – can make a huge difference. Currently, the IMI is a partnership of the Commission and pharmaceutical companies only; extending this partnership to the IT and medical devices sectors also, would be helpful to patients.

Ms Kuiper also referred to the importance of the European Semester Process in addressing access to healthcare; while this was started as a policy tool to help address the financial crisis, it is now a broader instrument, having an impact on society, health systems, science and innovation. The need to continue to focus on health systems reform and capacity building is a real priority and the ERN’s are a useful example of how expertise and knowledge can be pooled and shared; what might work for rare diseases could work in other areas as well.

Sharing of knowledge – regional, national, international - is the key to change. In this respect, the importance of data cannot be underlined strongly enough, not just for technology experts but also for patients. Interoperability of registries (between MS, between agencies) and sharing of data is essential for technological advance and innovation. Sharing of best practices in day-to-day medical practice is another priority, and strongly related to involving patients in decision making. The EU has a strong role to play in this, which can also support the development of sound financial models.

Coming back to the importance of multi-stakeholder involvement and cooperation, Ms Kuiper also stated that European discussions sometimes seem fragmented. Relevant discussions take place in the Council or Parliament but stakeholders are not always at the table. EFPIA, supported by 28 organisations organised a Health Summit last November, with the aim to come forward with a set of recommendations for EU-level health activities. While it is clear that the main competence for health services delivery and access remains at a MS level, a recent Eurobarometer survey indicated that 70% of EU citizens wants the EU to focus more on health care. The Health Summit focused on common relevant topics and came forward with a shared vision on the future of health, consisting of ten concrete recommendations. One of these (number 5) addresses the need for the establishment of a ‘solution-platform’, a Forum for better access to health innovation, in order to drive care and make progress2.

2 https://www.euhealthsummit.eu/

https://www.euhealthsummit.eu/


Sasa Jenko (Head of Public Health and Health Services Research sector, DG RTD, European Commission) stated that within the Commission, there is a close collaboration on health matters, as current challenges to healthcare systems need to be addressed in a comprehensive way. Current healthcare models are not prepared for ageing, the resulting shift to increasing prevalence of chronic diseases and the need for long term care professionals; they are based on acute rather than on chronic care. These are complex issues to address but it is our responsibility to ensure that citizens get timely access to quality healthcare.

Research can contribute toward the development of more adaptive and appropriate health care provision; it can support innovations across the board in areas such as prevention, diagnosis, treatment and training and reflecting in quality, outcomes, costs as well as access.

Ms Jenko underlined that people are at the centre of all the Commission’s policies. She provided a number of examples of innovations that stem from research with added benefits for patients, such as new surgical approaches, hand-over toolboxes from primary to secondary care professionals and new integrated care models. She also voiced her firm belief that all biomedical innovations – from basic to clinical science - need to be accessible to all patients as they are the principal beneficiaries. Moreover, research should aim to contribute to health care services becoming more resilient, accessible, sustainable and comprehensive. HE is currently being discussed; a budget of 7.7 billion euros is being proposed for this Programme’s health cluster. The sustainability of healthcare systems and the competitiveness of the health and care industry will certainly be amongst the priorities of the Programme. Other cross cutting issues relate to digitization and personalisation of health care and people-centred solutions for integrated approaches.

Ceri Thompson (Deputy Head of Unit, H3 e-health, well-being and ageing, DG CONNECT, European Commission) first outlined the European challenges in the field of health, i.e. the pressure on health budgets due to ageing population and prevalence of chronic diseases, unequal quality of and access to health care services and shortage of health professionals. Digital applications and data have the potential to improve health as they can contribute to efficient and integrated healthcare systems, personalised health research, diagnosis and treatment as well as prevention and citizen-centred health services.

Research has shown that 90% of European citizens agree to concede access to their health data (which requires interoperable and quality health data); 80% agree to share their data (provided privacy and security are ensured) and 80% agree to provide feedback on the quality of treatment. In general, the EC supports the transformation of health and care in the digital single market by securing access and exchange of health data, pool health data for research and personalised medicine and development of digital tools and data for citizen empowerment and person-centred healthcare, as set out in its Communication on the Digital Transformation of Health and Care adopted in April 2018. A concrete example of this work is the Commission’s recommendation on an EHR exchange format. This builds on previous work and provides the guiding principles governing the secure access to and exchange of


EHRs across MS borders, and a baseline set of technical specifications for the first health information domains for cross-border exchange of data. It also proposes to take this work forward with a Joint Coordination Process involving MS, the EC and relevant stakeholders. In terms of guiding principles, the recommendation includes the need for the format to be citizen-centric, data protected and cybersecure by design. The EC encourages MS to develop systems based on consent.

Mr. Steffen Amann (Director of Professional Development, European Association of Hospital Pharmacists - EAHP) briefly introduced his organisation, which has as overarching goal to provide better outcomes for patients by including hospital pharmacists in multidisciplinary teams in order to ensure the best use of medicines for patients.

Access is a broad and complex concept; for hospital pharmacists this amounts to having access to any treatment that involves a medicine. Medicines are not always available or licensed; hospital pharmacists try to find solutions for these situations, for instance by preparing these themselves, tailoring doses for children or other special patient groups and working toward improving access. On other occasions, medicines may be available but not effective, as it is increasingly the case with antibiotics. Therefore, EAHP calls for increasing the uptake of antibiotic stewardship (ABS) multidisciplinary teams, that include hospital pharmacists, in order to efficiently fight AMR. In this sense, hospital pharmacists can offer valuable knowledge and proposals for keeping drugs safe, also in light of the EU Pharmacovigilance Directive.

Hospital pharmacists contribute to medicine safety by carefully interacting with direct supply chains to avoid the insertion of falsified medicines into the therapeutic pathway. In terms of the future, Mr. Amann recommended that hospital pharmacists be fully involved in hospitals in order to efficiently contribute to the best care outcome and patient safety. Moreover, EAHP is working to put in place an EU-wide common training framework for hospital pharmacists with the aim of ensuring comparable levels of specialised knowledge and skills across the EU.


DISCUSSION

The Cross-border Directive:

Despite the legal framework of patients having access to health care in another country, this possibility seems to be relatively unknown to EU citizens. This needs to be addressed to make sure we get the best out of it. On the other hand, reinforcing health systems at a national level in parallel is very important. The ERNs represent a useful example of cross-border cooperation and economies of scale.

Better implementation of knowledge:

Research has provided us with a sufficient knowledge base of what works in addressing access. However, what about the implementation of this knowledge? How can this process be accelerated, and put in place? It could be useful to try and synergise all the funding mechanisms and see what can be implemented at MS level. There should be partnership in health systems and research, responding to unmet needs. There are many good ideas and initiatives but ultimately, implementation will depend on MS’ support and willingness.

Digitalisation of health care:

• In Bulgaria, pharmacists recently protested the EU’s legislation for verification of medicines, to stop falsified drugs from entering the system. In many cases, pharmacists do not even have computers, internet connection or the required tools to verify medicines. This is just another example of the huge differences between MS.

• There are great disparities and lack of investment is an issue. Still, there is merit in digital initiatives coming from the EU level, if only because of their potential for the future.

• The future holds much promise for a greater role for patients in monitoring their health and playing a bigger role managing their healthcare.

• It will be important to involve patients directly and formally in the joint coordination process, proposed for the implementation of the EHR format as their involvement can ensure user-friendliness as well as relevance.

• The EHR format is welcomed in principle but patients must have the opportunity to opt out of the system; data protection has to be in place as citizens will not want sensitive information to be shared.

• It was remarked that the ‘future has not arrived where the people are’. Data sharing will need to be addressed with great care, and multi-stakeholder discussions will need to take place to ensure good and open communication about what this entails. Trust in the system will be indispensable. The EU’s broader digital plans for Europe do include digital training and skills in the front line.


Harmonising systems?

• When talking about the 5 A’s and a case of a patient on the ground, there are huge complexities. Knowledge, spectrum of medicines, systems vary; access to health records vary. How to guarantee that the outcome is the same for the same medical need in country X and country Y? Can we synchronise the systems?

• There will always be regional differences; systems will never be totally synchronised or harmonised. Cultural differences also come into play. Patient choice and empowerment is important. Obtaining the most effective treatment in Europe under the specific local circumstances should be the objective. However, it would be good if clinical assessment could be harmonised and the 28 different systems can learn from each other. The proposed HTA Directive is a concrete and important example. We can also learn from each other in terms of health infrastructure.

A comprehensive approach to access:

Today’s discussion had a strong focus on medicines, treatment and care. However, all different facets of access should be contemplated. For instance, physical access in terms of transport. Moreover, there should be more attention to prevention and health promotion. Access is more than just treatment.



CLOSING REMARKS:

Susanna Palkonen concluded the meeting by introducing PACT’s Statement on the Future of Health in the European Union. She presented it, as the result of intense internal consultation and the involvement of over 20 organisations. It urges the EU institutions to continue and strengthen its focus on health, on EU cooperation and to this end, to appoint a Vice-President for Health in the future Commission. The Statement can function as an advocacy tool for PACT and its partners as well as for the future Interest Group on Patient Access to Healthcare. Ms Palkonen invited participants to sign the Statement at the meeting, or otherwise, to do so after having consulted their organisations.

In conclusion, she reiterated the need for an ambitious EU health agenda and a clear commitment of MS to sustain collaboration in the area of health. The fact that three Commission DG’s, among a great variety of other stakeholders participated in this meeting and committed to working together, is a meaningful start.


http://eupatientaccess.eu/fls/Final_Statement_3pages.pdf

http://eupatientaccess.eu/fls/Final_Statement_3pages.pdf

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REPORT - PACTeupatientaccess.eu/fls/PACT_report_Feb20.pdf · REPORT EU collaboration in health for better access: Taking stock and looking to the future Andrey Kovatchev Biljana Borzan