‘Value – Patient Preferences and Perspectives’; Pan-European workshop in Lisbon

EFNA’s 2018 pan-European workshop took place at the Champalimaud Foundation in Lisbon on April 17th and 18th under the topic of: Value – Patient Preferences and Perspectives.

The agenda explored patient engagement in Health Technology Assessment across Europe, with a focus on the most Patient Relevant Outcome Measures and how these can be better integrated and reflected in the decisions taken to reimburse new treatments.

Donna Walsh (EFNA Executive Director) opened the event by discussing EFNA’s ongoing project on neurology patient engagement in the HTA process.

“The first phase of our research shows that in many countries, there are channels for patient engagement. However, the literature doesn’t tell us whether this engagement has any real impact on the final decisions taken. The lack of transparency, perceived conflicts of interest and no voting rights for patients – really limit our ability to be real influencers in HTA.”

“However, it is really important that real engagement happens in neurology because many of these disorders are chronic – but fluctuating – and so it is very difficult to illustrate ‘cost effectiveness’ using current approaches,” she continued, “We also have to remember that the most burdensome symptoms are often the secondary symptoms – like pain, fatigue, sexual dysfunction and so on. And many of these primary and secondary symptoms cannot be directly measured and must be assessed using questionniares or interviews with patients.”

She asked the upcoming speakers to consider how we can ensure that we are valuing what matters most to patients.

This was addressed by Dr Iñaki Gutierrez Ibarluzea (Vice-Chair HTAi & Knowledge Manager, Osteba, Basque Office for HTA, Ministry for Health, Basque Government) who spoke about value beyond cost effectiveness and shared some excellent examples.

The afternoon session explored how the HTA framework might be adjusted for more patient-centric innovation.

Prof. António Vaz Carneiro (Head of the Centre for Evidence Based Medicine & International Consortia for Health Outcomes Measurement [ICHOM], Cochrane Portugal) discussed ‘Developing and Integrating Patient Relevant Outcome Measures’ while Prof. Mondher Toumi (Professor of Public Health, Aix-Marseille University) spoke about Value Added Medicines.


Day Two of the workshop featured a joint session hosted by EFNA with the European Brain Council (EBC). This was moderated by John Bowis (former British Conservative MP and MEP).

Patrice Boyer (Vice-President, European Brain Council) presented the Value of Treatment for Brain Disorders project and posed the question ‘How do we foster a new paradigm in value based, innovative, patient-centred healthcare?’

This was followed by views from

  • Flora Giorgio (Head of Sector Health Technology Assessment, European Commission), representing the European Policy-Maker
  • Nuno Silverio (Director of Market Access & Governmental Affairs, Merck), representing Industry
  • Donna Walsh (EFNA Executive Director) representing the Patient and
  • Maria do Céu Machado (President, INFARMED – National Authority of Medicines and Health Products) representing The National Regulator

Participants were then given a tour of the remarkable Champalimaud Foundation- a private biomedical research foundation. It was created according to the will of the late entrepreneur António de Sommer Champalimaud, in 2004. The building, designed by the architect Charles Correa, seeks to raise architecture to the level of sculpture, sculpture to the level of beauty and beauty to the level of therapy – in order to honour the centre’s work.

The workshop finished with a group exercise; mapping next steps for our Training Initiatives for Neurology Advocates (TINA), with feedback on TINA initiatives to date and an assessment of the current training/capacity building needs of neurology patient groups.

This event was open to neurology patient advocates from across Europe with no cost to participate.

EFNA’s next TINA event takes place on July 6th and 7th in Berlin, as a satellite to the FENS Forum. The topic will be ‘Science for Advocates’. Registration will open on Friday, May 25th. Check our website then for more!