Dates for your diary

Please also refer to the Events page on www.epposi.org for regular updates.

Welcome to new members

We are pleased to welcome the following organisations as members of Epposi:

New Epposi Board

The following Board Officers were elected at Epposi’s 2011 AGM:

The full listing of Board members can be viewed here.

Epposi Secretariat welcomes new staff member

Epposi is pleased to welcome Vanessa Roelandt as our new office manager and knowledge co-ordinator. Vanessa was previously office manager at The European Network of Science Centres and Museums (Ecsite).

Vanessa can be contacted at office@epposi.org

Advanced Innovation Programme updates

AIP Chronic Conditions Management

Epposi presented its second stage research findings on chronic conditions management and sought open inputs for its new Optimal Chronic Care Model at a stakeholder conference in Brussels on 22 November, which attracted almost 70 representatives of patients’ organisations, academic sciences, medical technology and pharmaceutical industries, payers, healthcare professionals, carers and employers, and observer partners in the EU institutions and national ministries. Read more

A white paper outlining the commonalities and more importantly the gaps in the current management of chronic conditions in 10 EU countries, across five disease areas (cardiovascular, diabetes, neurological, COPD, musculoskeletal and cancer diseases) will be published in March 2012.

Other priorities for 2012 are:

Awareness-raising for the model:

• Roll-out of communication-raising activities to engender “awareness-acceptance-evangelising” of the model among all stakeholder groups – particularly in the context of the European Year of Active Ageing and the EU reflection process on the holistic management of chronic conditions
• Peer-reviewed journalistic opportunities to highlight the work of CCM programme.

Applying the model to the control groups identified in 2011 and to test it “in situ” across various stakeholder groups:

• Application of “an optimal chronic care model” to rare disease, serving as one of the research control groups
• Identifying the most relevant aspects of the model to be implemented: community (informal care-givers); employment and working life
• Mapping potential stakeholders interested in the implementation process (different pilot groups within different settings)
• Establishing benchmarks and monitoring processes.

Read the full 2012 Work Plan.
See all upcoming  AIP-CCM activities.

AIP Health Technology Assessment

Following the outcomes of expert and stakeholder meetings in 2011, the programme for 2012 will focus on how to effect attitudinal as well as systemic change in order to build a framework for a societal benefits approach to HTA, which can take better account of smaller, specific patient groups across Europe, as well as the needs of the wider populations.

As a first step, a taxonomy needs to be created to ensure all stakeholders are ‘speaking the same language’ before work can begin to map the best (and interesting) HTA societal benefits practices in Europe today, conduct pilot studies and develop a full framework.

Take part in our survey

Help us build the taxonomy for a societal benefits approach by taking part in our survey to give your perspective on 6 key HTA definitions where there is currently little or no multi-stakeholder consensus. The survey is anonymous, only your stakeholder category is required for evaluation purposes.

The survey is open until 11 March but please take part now so we can include your contribution in the discussion of the interim results in our webinar on 23 February.

Other key actions in 2012 will be to:

• Map the best (and interesting) HTA societal benefits practices in Europe today against the definition developed in 2011 of a societal benefits approach to HTA
• Select four countries as pilots for case studies on a societal benefits approach to HTA, conduct the studies and analyse the results
• Develop the framework
• Reach consensus between stakeholders on the ideal framework
• Simulate the framework in live labs
• Develop a workable template for implementation of a societal benefits approach.

Read the full 2012 Work Plan.
See all upcoming AIP-HTA activities.

AIP Innovation In Healthcare

Building on the work carried out in 2011, we will focus in 2012 on utilising the co-creation approach to innovation in healthcare. Epposi will examine practical ways to render European innovation policies complementary to and conducive towards market uptake by the end user of innovative products and services.

Key activities in 2012:

• Mapping of best practice case examples: The discovery and examination of several areas that have successfully used a more community-based approach to healthcare innovation than traditional policy and practice.
• Development of a series of business models based on best practices which are scalable and transferable: using these example areas to see what works and what still needs further improvement, we will design and develop an "ideal".
• Designing rules for a co-creation infrastructure from a local to a European level.

Read the 2012 Work Plan.
See all upcoming AIP-INNO activities.

AIP Rare Diseases

Rare disease activities within Epposi are structured as the Epposi Rare Diseases Interest Group (AIP-RDIG).

Given the cross-cutting impact of the Interest Group, its main mandate will be to:

• Suggest project topics (focused on medium- to long-term impact) and possible collaborative programme partners
• To address rare disease issues horizontally across Epposi's existing Advanced Innovation Programmes (AIPs). In particular, how and where to include rare disease elements in the design and planning of the outline model for AIP-INNO, AIP-HTA and as a control group in the 2012 roll-out of AIP-CCM.

In 2012, Epposi will also work vertically to address the specificity of rare disease challenges from a multi-stakeholder perspective on a case-by-case project basis.

A minimum of two rare disease policy areas will be investigated for discrete pilot projects, such as the impact of ageing (rare disease patients who go on to develop age-related chronic conditions and how to diagnose and manage these co-morbidities) and on neo-natal screening.

Read the 2012 Work Plan.
See upcoming AIP-RDIG activities.

Improving how we communicate – short survey

We want to improve the way we communicate with our members and stakeholders. Please help us by taking part in this short survey (approximately 3 minutes) so we can gain a better sense of how you use our website and social media outlets for information and updates so we can enhance how we engage with you.

Meet Epposi at...

Come and see us at the following European Commission conferences where Epposi will have a stand:

Rare Disease Day

29 February 2012 marks the 5th International Rare Disease Day, coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organising awareness-raising activities converging around the slogan "Rare but strong together".

Launch of E.S.PKU Benchmark Report
'Closing the Gaps in Care'
Wednesday, 29 February 2012, European Parliament
12.00 – 14.30

To mark World Rare Disease Day on Wednesday 29 February, the European Society for PKU (E.S.PKU) alongside MEPs Esther de Lange and Antonyia Parvanova have the pleasure to invite you to the launch of E.S.PKU’s Benchmark Report – 'Closing the Gaps in Care', which compares access to and quality of care in five European countries: the UK, Spain, Sweden, the Netherlands and Poland.

Please register by Friday 17 February by e-mail to schauvet@webershandwick.com
For more information on E.S.PKU: www.espku.org

If your organisation has any relevant activities or publications that you would like us to publicise, please send details to office@epposi.org.

We look forward to collaborating with you all in 2012.

Epposi Secretariat
21 rue Marie-Thérèse
B-1000 Brussels, Belgium
Tel: +32 (0)2 503 1307
Fax: +32 (0)2 274 1759
office@epposi.org

About Epposi
Founded in 1994, Epposi is an independent, not-for-profit, partnership-based and multi-stakeholder think tank based in Brussels, Belgium.

Our goal is to work at the "cutting edge" of European health policy-making, providing members and the wider public with high quality independent research, capacity-building, knowledge exchange and dissemination with the aim of bridging the gap between innovation and improved public health outcomes.

In order to fulfil our mission and build on our established, unique, citizen-centric and multi-constituency approach, Epposi enables consensus-driven, equally-weighted outcomes between the different stakeholder groups of its membership: patients' organisations, science and industry.

Epposi is open to members from EU-facing umbrella patients' organisations, commercial enterprises and their related trade bodies, research institutes, professional and business federations. Associate membership is open on nomination to NGOs representing a broad range of civil society interests, foundations and international organisations which support the Epposi ethos and are active in human healthcare.

If you do not wish to receive further information from Epposi, please e-mail office@epposi.org with ‘Unsubscribe’ in the subject line.