EFNA, Alzheimer Europe and Gamian-Europe launch important Call to Action on Patient involvement in Brain Health

On 12 May 2022, Alzheimer Europe, the European Federation of Neurological Alliances (EFNA) and the Global Alliance of Mental Illness Advocacy Networks – Europe (GAMIAN-Europe), organised a webinar on ‘Patient involvement in Brain Health: Safeguarding the future of Brain Health for patients’. The meeting aimed to underline to the brain health community why engaging patients in the discussion on brain health is crucial.

To date, patient involvement has largely not been used to a satisfactory degree in research into brain health and innovation, meaning there has been relatively little impact on patient care and diagnosis. The patient community needs precision medicine in the prevention and diagnosis of brain diseases. To achieve this goal, those working in the fields of neuroscience, neurology and psychiatry need to cooperate further, align themselves more closely and transform their framework, in a similar way to what has been done in oncology.

The meeting of 12 May was opened by Joke Jaarsma, President of EFNA. The keynote speech was delivered by Guendalina Graffigna from the Università Cattolica del Sacro Cuore, Milan, Italy. Prof. Graffigna discussed “The impact of patient involvement in research, policy and practice”, emphasising that “Patient Engagement can (and should) be achieved in many different settings in Brain Health: from the engagement in research for drug development, to the engagement in policy making, in health technologies assessment, in co-designing healthcare plan and interventions, in shared decision making about therapy and in self-management and treatment adherence.”

Orla Galvin, Executive Director of EFNA then presented a call to action, issued by the three host organisations, Alzheimer Europe, EFNA and GAMIAN-Europe, highlighting the need for improved patient involvement in brain health in Europe. It states that in order to safeguard the future of brain health for patients, it is imperative that all stakeholders ensure the priorities, needs and expertise of those living with brain disorders are considered and included. It calls on all stakeholders to be accountable for patient involvement and shared decision making; specifically, on national and EU governing bodies to develop and, where developed, to implement policies to ensure early and meaningful engagement and involvement of patients to:

  1. promote a human rights based approach in all policies and research affecting people living with brain health conditions
  2. prioritise patient needs in research agenda setting
  3. review funding proposals for research
  4. access, review and report on access to diagnosis, therapeutic intervention and care pathways
  5. support access to and design of clinical trials, and the design and use of patient reported outcome measures
  6. support approval processes for therapeutic interventions
  7. contribute, with industry, to patient-centric design in research, development and commercialisation
  8. optimise data sharing for patients and society.

You can read the full call to action, and endorse it, here.

Following Dr Galvin’s presentation, there was the first of two roundtable discussions, “What matters most to patients? Involving patients in research prioritisation”. The session was moderated by Nigel Olisa, Executive Director of GAMIAN Europe, who introduced patient advocate Helen Rochford-Brennan first, to give the patient perspective. Helen Rochford-Brennan focused on the importance of ensuring meaningful non-tokenistic involvement, stating “If we do not have input in decisions it is not patient involvement. Patient Involvement is not a tick box exercise.” She also noted that “Public Involvement is very important for people with dementia because it makes us visible and reduces stigma. Involvement in research has given me hope and a sense of purpose.” Finally, she reminded researchers that public involvement participants do not exist merely to endorse their existing opinions, but rather should be partners in research, who are truly listened to and whose opinions impact outcomes.

The three panellists in this roundtable were Georg Starke, École Polytechnique Fédérale de Lausanne, Stefan Schreck, DG SANTE, European Commission and Frédéric Destrebecq, European Brain Council, Brussels. Each gave his perspective on the topic, with Dr Starke emphasising that “medical research on neurotechnology and brain health should prioritize patients’ needs to uphold its Hippocratic ideal: to work for the benefit of the sick, to cure them or at least ameliorate their condition.” There was ample opportunity for some lively and interesting discussion in the Q&A session, before the webinar moved to its 2nd and final roundtable session, titled ” Improving the way we involve patients in brain health”, moderated by Jean Georges, Executive Director of Alzheimer Europe.

The patient perspective was delivered, this time, by Erik van der Eycken  and panellists included Nathalie Bere, Patient Engagement, European Medicines Agency (EMA), who noted that “the insightful experiences and perspectives of patients living with a particular condition are a vital element within medicines development, assessment and approval.   Ensuring that patients views are systematically captured, in a meaningful way, will ultimately result in more patient-relevant outcomes.” Up next, were panellists MEP Alex Agius Saliba and Monica di Luca, Former President of the Federation of European Neuroscience Societies (FENS). Monica di Luca shared details of the European Brain Research Area (EBRA) project and pointed out that the project “clearly  highlighted that public patient engagement requires increased attention. It is the role of the scientific community to engage with civil society since the first steps of research projects’ development and to educate the next generation of neuroscientists in this direction.” Jean Georges thanked the panellists and patient representative and moderated the short Q&A session. The event was then closed by Joke Jaarsma.