THE BRAIN, MIND AND PAIN INTEREST GROUP MEETING REPORT
Friday, 19 November, 10.00-13.00 CET, hosted via Conference+
Missed this event? Watch the full recording here
On 19 November 2021, the MEP Interest Group on Brain Mind and Pain (BMP) hosted a virtual event entitled “Turning principles into action: best practice in reducing health inequities”. The event’s main objective was to discuss how the Interest Group can advance meaningful policies and interventions to address the drivers of health inequity, whilst taking a practical look at examples of best practices that can be scaled up and applied to these disease areas. The event was attended by EU policymakers, healthcare professionals, patient organisations and industry representatives.
Ms Sandra Gallina, Director General for Health and Food Safety (DG SANTE), addressed the audience and presented the European Commission’s commitment to reduce health inequity and promote sustainable wellbeing across all EU Member States. Moreover, she thanked the MEP Interest Group for shining light on such an important topic that directly and indirectly affects society.
Sir Michael Marmot, Director of the University College London Institute of Health Equity. sent a supporting message, focusing on the impact of the Covid-19 pandemic on health equity and the further strain it placed on the existing fragile systems. Sir Marmot noted the importance of recognising the underlining social determinates of health and outlined the actions and mechanisms that should be taken to address them through “building back fairer”.
Panel Debate: Advancing meaningful policies and interventions to address drivers of health inequity
|Moderator: Anya Sitaram
During the discussion, Dr Nicole Valentine highlighted that social and economic policies cause health inequalities. Referencing a pre-Covid-19 pandemic Report on Health Equity Status, published by WHO Europe, she noted that many European countries had stagnated or made very little progress with regard to social protection. WHO is now developing interventions on how to address inequalities through a “multilevel” approach, which means not only addressing social inequalities, but also inequalities in health and the barriers that communities and community organisations face in accessing the correct services.
Ms Dorota Sienkiewicz stated in her intervention that health inequality between and within Member States results from adopting downstream solutions instead of systemic changes that could offer the best value for what can be offered across Europe. Under the Third Health Programme, a EuroHealthNet Joint Action on Health Equity in Europe was funded and research carried out within this context found that many countries included some reference to health equity in a legislative document. However, this was not seen to be translated into coordinated, coherent action across policy levels Ms Sienkiewicz highlighted that political mandates on health equity need to come from an executive level, with all actors working together to reach a common goal.
Ms Astri Arnesen and Ms Nadia Malliou shared their experience with BMP disorders. Ms Arnesen began by sharing her family history and personal experience with Huntington’s disease, focusing on stigma and its impact on patients and their families and carers. Moreover, she noted the “invisibility” of BMP disorders that impact how society reacts to these diseases, including from an
employment perspective. Ms Nadia Malliou echoed Ms Arnesen’s points, further stating the unique and important narrative of the patient’s perspective. As a chronic pain patient, she explained the challenges she has faced during the pandemic with regard to access and the high cost of treatment.
MEP Sirpa Pietikäinen (FI, EPP) highlighted during her intervention the importance of understanding the patients’ needs, highlighting that only those who are impacted with constant pain can understand the psychological effects of this on a day to day basis. Ms Pietikäinen explained that health inequalities still exist in Europe today, especially with regard to correct and timely diagnosis, further noting the importance of developing a roadmap for neurological and chronic pain at a European level.
Presentation of best practices in the areas of stigma, access and patient empowerment
In advance of the annual conference of the Interest Group, the Group launched a call for examples of best practices in the fields of neurological and chronic pain. The best practices focused on the three priority thematic areas of the Interest Group (stigma, access and patient empowerment) and had to address specific challenges of the patient community. The assessment of each proposal was made by a Selection Panel composed of a multi-stakeholder group with extensive expertise and professional experience in policy and advocacy.
Before the presentation of the best practices, each thematic area was introduced by a high-level speaker, including Ms Astri Dentler, Member of Cabinet of Commissioner Dumbravka Šuica, Ms Marta Andreykiv Senior Director, Global Market Access at Teva, and MEP Frances Fitzgerald (IE, EPP).
The selected best practices under each thematic area are as follows:
Stigma, discrimination and isolation
- Federación Española de Párkinson (FEP) (Spanish Parkinson’s Federation) developed and implemented an awareness campaign campaign called “#TagOnAPositaveLebal”, which sought to raise awareness of the importance of a patient’s emotional and psychological health.
- The ME/CFS Netherlands Foundation’s best practice brought together young patients with ME suffering from extreme fatigue and healthy peers. Through a community service internship that both groups undertake, they address discrimination and stigma whilst showing that ME patients have a meaningful contribution to society.
Access to treatment, service and support
- MS21 is an initiative supported by Merck, aiming to gain real-world, actionable insights into unmet needs in managing multiple sclerosis (MS), from the perspective of healthcare professionals (HCPs) and people living with MS.
- ‘Plain Talking’ is an awareness campaign initiated by European Pain Federation (EFIC), targeting both clinicians and people living with chronic pain. As part of the campaign, a Health Literacy Working Group is working to increase awareness about the concept and impact of limited health literacy.
- The ADHD Women Project is the initiative of two patient organisations from Belgium and Germany, empowering women living with a neurological condition to engage more effectively in shared decision-making.
To find out more about the selected best practices, please click here.
Interactive discussion on presented best practices and next steps
Participants at the event had the opportunity to have an open discussion on the presented best practices and also the importance of the patient voice at a European level, especially in reinforcing primary healthcare systems and ensuring patients are empowered and meaningfully involved from day one of diagnosis.
Ms Astri Arnesen further noted the importance of health literacy and using the patient voice to develop inclusive healthcare services that address patients’ unmet needs. Ms Brona Fullen (EFIC) highlighted the inclusion of health literacy as a critical topic in the EFIC curriculum for 2022 to allow all healthcare professionals to develop core skills that ensure appropriate communication with chronic disease patients.
Representatives from the Spanish Parkinson’s Federation and MC/CF Netherlands discussed their ongoing work to influence change nationally and highlighted that these initiatives could be replicated on a larger scale.
The discussion concluded with Mr Tadeusz Howrot, Senior Advocacy Advisor for EFNA, noting the WHO upcoming Intersectoral Global Action Plan on epilepsy and other neurological disorders 2022 – 2031. The Plan has a 10-year global implementation phase, which includes the European Region, with a target for all countries to have at least one functioning awareness-raising campaign for advocacy programs in neurology. Mr. Howrot stated that this would be an excellent tool for neurological advocacy, and it will be critical to engage governments to make sure patients are involved in designing such programs.
The co-chair of the Interest Group, MEP Tilly Metz (LU, Greens/EFA), closed the event by calling for a more holistic approach in the fight against health inequalities and the need for independently collected data to create targeted policies and better understand health inequalities across the EU Member States. MEP Metz also noted how health inequalities range from stigma, isolation and discrimination to improving education and information as well as gender equality, highlighting the need for specific mandates to address social health inequalities during Covid and beyond.
The event was concluded by Ms Joke Jaarsma, President of EFNA. Ms Jaarsma noted the critical points raised during the event, including the importance of social determinants in health, the need for tailored treatments, and the importance of hearing the experiences of patients.