Report: TINA Autumn Academy – Bucharest, October 2018

The Future of Healthcare in the EU – Towards more sustainable healthcare organisations

Day One – Monday, October 15th 2018
Focus on: Advocacy in Europe

 

On 15-16th October, the EFNA Autumn Academy of the Training Initiatives for Neurology Advocates [TINA] took place. 30 participants from neurology patient groups from CEE countries gathered in Bucharest to discuss the future of healthcare in the EU in the context of the upcoming EU elections, as well as how patient groups can achieve better financial sustainability.

The meeting also announced the launch of the Romanian Neurological Disorders Coalition, to ensure a better representation of those affected by these conditions. Patient groups involved include Multiple Sclerosis, Parkinson, Alzheimer, Epilepsy, Myasthenia Gravis, Stroke, Huntington, Dystonia and Spinal Muscular Atrophy.

Donna Walsh, EFNA Executive Director, opened the meeting and welcomed the participants to Bucharest for the first edition of the Autumn Academy. She explained that these trainings for neurology patient advocates started in 2016, with editions having already taken place in Romania, Spain, Poland and the Netherlands. As Romania has been one of the most active patient communities and expressed great enthusiasm for these education and empowerment initiatives, EFNA decided to organise the Academy in Bucharest – inviting all interested organisations from CEE countries to join. Given that the focus of the event was to discuss the future of healthcare in the EU, she began by asking participants to briefly outline their priorities in terms of health policy. These included access to treatment and services, increased awareness, eradication of stigma, sharing of best practices and cross border collaboration/learning, better social supports incl. a focus on carers, etc.

After this introduction, Donna Walsh introduced Mihai Calin, Political Advisor at the Romanian Ministry of Health. Mihai apologised, on behalf of Ms Rodica Nassar, Secretary of State in the Romanian Ministry of Health, for being unable to attend. Mihai explained to the participants what holding the Presidency of the Council of the EU means, focusing on the word “obligation”, as this is not something optional for the member states. The Presidency is rotating, each member of the EU holding to presidency for exactly 6 months (January-June; July-December). Currently, the Presidency is being held by Austria, with Romania being next in line, starting in January 2019.

Mihai emphasised that the strategy and work plan of Romania is not finalised but he shared with the attendees the priorities of Romania. The general theme of the Presidency is ‘the citizen’, the life of citizens and their quality of life. For health, the general theme is Access to Healthcare for all European citizens. Romania is looking at continuing to build on current priorities and to close open legislative files. Therefore, one of its objectives is to adopt the directive on EU Cooperation in HTA before the current mandate ends.

Donna Walsh asked Mihai Calin what patients could do to get more involved in shaping the priorities of a member states during the Presidency of the Council of the EU. Mihai explained that every country should have consultations with its citizens. For example, at the beginning of the year in Romania there was a consultation that involved the civil society to see assess priorities. Mihai acknowledged that not many NGOs were present, one of the reasons being also the lack of communication. The conclusion was that it is not always easy for NGOs and patient groups to have their voice heard but they need to make themselves visible and to knock at the doors of authorities, both with their issues but also with possible solutions to them. It is important to do this as many times as it is necessary, until their voice is heard. Mihai also emphasized that working with other groups and speaking with one voice does help, policy-decision makers are more responsive to coalitions than to being approached individually by each single disease representatives.

To check the priorities of the current Council Presidency, Austria, please click here
The Romanian calendar and priorities will soon be available here.
You can see the full list of upcoming Presidencies here.

 

Donna thanked Mihai Calin and the Romanian Ministry of Health for the intervention and welcomed the next speaker, Marius Tudor, Project Manager at the European Public Health Alliance (EPHA).

Marius thanked the organisers for the invitation and briefly introduced EPHA, and its work on the future of health in the EU and beyond. Health is a human right and the EU should take an active role in protecting it.

Furthermore, Marius added that there are many reasons why the European Union should take more actions on health. The most important ones refer to the common challenges to Europe’s health systems that require common action. Challenges include antimicrobial resistance (AMR), increase in chronic diseases, obesity, health inequalities, air pollution, etc. Every euro invested in public health gives an average return of €14 to the economy. Every additional average year of life expectancy is worth a boost to GDP of up to 4%.

Marius explained that at the moment, €413 million has been allocated for the health strand. In comparison with the Third Health Programme (2014-2020), the funding for the health policies has been cut by 8%. This represents less than 0,05% of the total EU budget in the new proposal. This is worrying, as budget should reflect priorities.

It has been also reported by the European Commission that in order to strengthen EU actions in the area of health, other financial instruments such as the European Regional Development Fund, Horizon Europe, Digital Europe, etc. will also provide some funding for health policies. The EU claims that the structure will facilitate the new synergies between different EU financial instruments thus potentially strengthening health policies and providing additional funding. However, there is no coordination foreseen to ensure that health aspects are not side-lined by other competing interests.

Therefore, EPHA advocates for a new European Commission that will make health a priority and assess the impact on health of EU policies. Moreover, the funding dedicated to health should double, from €413 million to €826 million. In addition to this, the EC Steering Group on Health Promotion and Disease Prevention should be scaled up with meaningful involvement of health civil society. This is extremely important as more involvement from patient groups would lead to empowering people to take control of their health and well-being.

After Marius’ presentation followed Donna Walsh who emphasized the need for neurology to rank higher on the list of global health priorities. Donna’s message was that all advocacy should be positioned within the context of global priorities – she referred to the Sustianable Development Goals (SDG), in particular SDG3: Ensure healthy lives and promote well-being for all at all ages. To read more about the SDG, please follow this link.

Donna also mentioned non-communicable diseases and how, despite neurological diseases being the largest cause of DALYs (10.2% of global DALYs in 2015) and the second-largest cause of global deaths (9·4 million, equivalent to 16.8% of global deaths), they are often not included visibily in this category. Therefore, she called for increased awareness and understanding of the nature, prevalence and impact of neurological diseases and, for the community, to be unified in approach as ‘neurology’ – which is also one of the many reasons EFNA conducts these training initiatives, both at national and at regional level.

In her presentation, Donna introduced the work of EFNA in the advocacy field. She referred to the Brain, Mind and Pain Interest Group and the thematic areas for the 2019 – 2024 mandate. These are:

  1. Eradicating stigma, isolation and discrimination
  2. Equitable access to healthcare services and treatment in Europe
  3. Promoting patient involvement and engagement

For EFNA the upcoming EU elections represent an opportunity to update EFNA’s policy documents, to develop key messages and advocacy kits, as well as to find new champions to support its work. You can find out more at www.brainmindpain.eu

The presentation of Donna was followed by lively discussions with the participants after which the first day of the meeting was closed.

 

Day Two – Tuesday, October 16th 2018
Focus on: Funding and Fundraising in Europe

Donna Walsh welcomed back all participants and made a short recap of the previous day. Afterwards, she explained the structure of the second day, focused on funding mechanisms and a fundraising workshop that are aimed at providing everybody with further insight on what is available and how they could increase their chances of applying and securing funding.

The opening presentations of the day were given by Frederic Destrebecq, Executive Director at the European Brain Council and Carla Finocchiaro, Founder of CF consulting, who has high-level expertise in identifying, coordinating and managing projects under the European Union health grant opportunities

The focus of the two interventions was on the importance of brain research, how patient groups can better advocate for increased funding and, most importantly, how can they get in involved in research consortia.

Fred Destrebeq’s presentation was built around the opportunities to exemplify how patient groups can influence and benefit from EU funding. The presentation started with an introduction of the European Brain Council, followed by the societal and economic impact of brain disorders: there is a strong need to act now. The cost of brain disorders is over EUR 800 billion a year, with no cure being available for most brain disorders. Therefore, EBC is advocating for increased Brain Research in the current and future programmes. Brain health needs to be tackled in a integrated manner; basic and clinical research need to benefit from increased support and funding opportunities need to be optimised.

Furthermore, Fred briefly introduced the H2020 programme, with a focus on health (to be further discussed by Carla Finocchiaro) and the budget foreseen for 2021-2024, that is only EUR 7.7 billion – too low in the context of the current pressing challenges. EBC welcomes the increased Horizon Europe budget but believes it is insufficient to address the societal challenges related to health research. Therefore, EBC recommended to redistribute the proposed budget of Horizon Europe in order to make more funding available for health research.

Furthermore, it is crucial that the next Framework Programme includes specific objectives aimed at accelerating brain research and providing tangible solutions to patients living with mental or neurological conditions. In light of this, EBC highlighted the importance of adopting a mission related to the brain and including “Brain research” and “Developing novel treatments for improving the lives of patients living with mental or neurological conditions” as key priorities under the area of intervention “Non-Communicable and Rare Diseases”. To read EBC’s response, please check this page.

Fred also introduced the EBRA project, that will start on 1 November. EBRA will gather the brain research community at large, the major brain research initiatives and the relevant stakeholders to foster networking: identify synergies and leverage on critical resources among projects); outreach research community, patients public and policy makers and regulators. The project will also look into developing practices /guidelines and aligning strategies and develop global initiatives.

The presentation ended with a strong emphasis from the European Brain Council on the priceless role of patients in any research project. Patient groups need to:

  • Build a compelling case to support advocacy: ensure that research priorities address actual patients’ unmet needs.
  • Harvest on your success: make yourselves known and engage w.research consortia.
  • Collaboration is key to success hence the need to partner with .other organisations (EFNA, EBC,…).

Carla Finocchiaro shared with the participants her knowledge on how to be part of a H2020 project, how to join/form a consortium, what is the evaluation criteria and how patient groups can be part of a project-life cycle.

In H2020, Carla mentioned some of the grant opportunities in the Excellence in Science pillar that could be accessed by patient groups, such as:

  • Marie Skłodowska Curie actions
  • Opportunities for training and career development
  • Research infrastructures (including e-infrastructure) •
  • Ensuring access to world-class facilities

There are other funding opportunities, for example, the ones part of the societal challenges or the industrial leadership. Further details on the structure and the subcategories can be found in Carla’s presentation, that all participants have received.

Carla continued her speech by giving a very clear introduction of the actors with an EU project and continued with explaining how a consortium is formed. A research consortia must be complementarity in terms of expertise, disciplines, backgrounds, countries representation and organisation types (e.g. academia, hospitals, researchers, industry, media, citizens & patients…….). Patients play a key role and all patient groups must know how valuable they are as an asset.

Furthermore, Carla walked participants through the H2020 Health programme and explained both how to read the programme, but also how the award criteria are arranged. There are 3 criteria: excellence (clarity and pertinence of the objectives; credibility of the proposed approach), impact and implementation (effectiveness of the Work plan and complementarity).

An important piece of information for the attendees was that they can also become evaluators. Carla explained what becoming a reviewer means, how the EC chooses its experts and how they can become experts themselves. Further details on this can be found on the EC website.

Regarding the lifecycle of the project and the involvement of patients, Carla explained what patient involvement can bring:

  • ensure relevance to the call
  • expert involvement
  • added value
  • optimise ethics & safety
  • design of protocols
  • recruitment and follow-up
  • communication
  • promotion and implementation of research outcomes
  • ensure impact through real benefits from «user» involvement
  • sustainability of outcomes

In order for patient organisations to register their organisation on the Participant portal of the Commission and include their data they will need to go on this portal. She also said she would circulate a template that patient organisations could use to advertise their interest and expertise in being involved in EU research consortia.

Contact details of the National Contact Points, as the main structure to provide guidance, practical information and assistance on all aspects of participation in Horizon 2020 can be found here.

Donna Walsh thanked Fred and Carla for their interventions and introduced the next speaker, Rosa Castro, Senior Policy Advisor at Milieu and Project Manager of the ESI Funds for Health project.

Rosa started her presentation by introducing the ESI Funds for Health project, in the framework of the European Structural and Investment Funds. She explained how the ESI funds work and how it can support health:

  • To complement the existing knowledge on the ESIF 2014-2020 investments in the health sector
  • To assess how these can contribute to implementing EU health policy goals (particularly reducing health inequalities and supporting structural reforms)
  • To further develop capacities of the relevant actors in EU Member States and regions to support the effective and consistent implementation of ESIF for health.

Rosa also explained how the European Structural and Investment Funds are used to invest in local and regional projects to contribute to a healthy European economy. The main beneficiaries are EU Member states, but that doesn’t mean there are no opportunities for patient groups.

The current ESI Funds are negotiated for the 2014 – 2020 period, with 2021 – 2027 negotiations in progress. Member States choose priorities and specify their objectives. In this context, it is important to have a close collaboration with the authorities and highlight the challenges of the patients the organisations represent, Rosa reminded participants.

In the ESI Funds there is no specific health-related thematic objective in 2014-2020 but investments are possible through several thematic objectives :

  • Thematic objective 1: strenghtening research and innovation
  • Thematic objective 2: e-health
  • Thematic objective 9: access to healthcare

Rosa gave some concrete examples of projects that have been funded by the ESI Funds focused on dddressing health inequalities and supporting structural reforms –de-institutionalisation. A list of all projects can be found here.

The conclusion of this presentation was that a variety of interventions and projects are possible and involving patients has been identified as a key success factors. Rosa advised attendees to make their voice heard to the local/regional/national authorities and look for partnership in such future projects.

One important factor is that projects need to relate to the programming in each country or region (for European Regional Cooperation Interreg projects).

The day continued with the interactive workshop of Peter Gustafik, from PCDS. Here participants were invited to think about what makes a successful fundraiser and ideas for novel approaches to fundraising. His slides have been circulated to all participants.

 


Presentations from the meeting are available to download here

For any questions or further details, pariticipants are welcome to email either Donna: executivedirector@efna.net or Andreea: Andreea.antonovici@afectiuni-neurodegenerative.ro

 

Share this article

Share this! Tweet this! Share this!