THE BRAIN, MIND AND PAIN INTEREST GROUP MEETING REPORT
15 June 2021
On 15 June 2021, the MEP Interest Group on Brain, Mind and Pain organised a virtual working session entitled “Achieving health equity after the Covid-19 pandemic”. The event’s main objective was to understand the long-term impact of the Covid-19 outbreak on different population groups affected by BMP disorders, and to define and frame the inequalities and challenges they experience. The working session was attended by EU policy-makers, healthcare professionals, patient organizations and industry representatives.
Attendees were welcomed by Ms Joke Jaarsma, President of the European Federation of Neurological Associations (EFNA). Ms Jaarsma highlighted in her opening remarks that the Covid-19 pandemic has further strained health inequalities within the EU and its Member States, impacting deeply people living with BMP disorders. Ms Jaarsma also underlined the need to urgently address these inequalities, touching upon the complexities of healthcare disparities and the required political commitments.
Mr Joop van Griensven addressed the audience for the last time in his capacity as President of Pain Alliance Europe (PAE). Mr van Griensven discussed, in more detail, the impact of Covid-19 on BMP patients and vulnerable groups, highlighting that the aftermath of the pandemic will be a critical point in ensuring that those living with life-limiting conditions are not socially excluded and are meaningfully involved in all policy discussions. Mr van Griensven also took the opportunity to look back at the past nine years, and reflect on the long way that the Interest Group has come from its launch to present times.
Following these introductions, Ms Donna Walsh, Executive Director of EFNA and Ms Deirdre Ryan, Presidential Candidate of PAE presented the results of two recent surveys that looked at the impact of Covid-19 on those living with neurological and chronic pain in Europe. The two surveys had similar findings, with almost 45% neurological patients and 48% chronic pain patients experiencing difficulties in receiving appropriate care during the pandemic. Additional respondents’ concerns and fears included long waiting times to see specialists, the impact on mental health/social isolation, medicine shortages or increased use of digital technology. Based on these results, EFNA and PAE presented their key conclusions and recommendations to policy-makers.
After the initial presentations, the audience was provided with the EU institutional perspective by Ms Katarzyna Ptak-Bufkens from the European Commission and the Interest Group’s co-chair, MEP Tilly Metz (Greens / EFA, Luxembourg). Both representatives stressed their personal and professional interest in the topic. Ms Ptak-Bufkens referenced some of the Commission’s ongoing complementary policy tools to address health inequalities, including the European Pillar of Social Rights and Action Plan, and the Health Systems Performance Assessment (HSPA), highlighting that a ‘one size fits all’ solution is impractical and that tools should serve the national and subnational context and help those most vulnerable. MEP Metz welcomed Ms Ptak-Bufkens’ remarks while strongly emphasising the importance of putting non-communicable and chronic diseases, such as BMP disorders, at the forefront of future-proofing and building resiliency of European healthcare systems.
Following the opening plenary, three parallel workshops allowed for a more interactive discussion on the Interest Group’s core themes: stigma, access and patient empowerment. Inspired by the design thinking methodology, these key themes were “matched” with different population groups prone to experiencing healthcare inequities: younger and older people, vulnerable groups impacted by geographical disparities, and women with BMP disorders. Based on desk research and interviews with patients from each population group, patient personas were developed and their experiences were discussed during the workshops.
Participants at the workshops were then asked to identify which of the challenges experienced by the personas were the most feasible to solve. Attendees also contributed to the discussions and co-decided the right level of engagement and the resources needed to address them.
Through this exercise of gathering insights from different players in the healthcare arena and promoting a co-decision approach, the challenges experienced by people with BMP disorders were better framed, and this will ultimately contribute to identifying more person-centred solutions.
#1: “Covid-19 and the future of ageing: intergenerational connections” (stigma, discrimination and isolation)
Participants in this workshop agreed that the most solvable challenge in the short term for ageing patients was the lack of public awareness of BMP disorders, highlighting that better information, including via improved digital literacy, could contribute to increased social inclusion. Moreover, a better understanding of BMP disorders among the general public and policy-makers would help prevent stigma and discrimination on a day-to-day basis. In the participants’ opinion, addressing this challenge should happen at EU level and be driven by patient organisations, with the support of multiple stakeholders to amplify impact, while ensuring coordination and resonance at local level. For this to become a reality, patient voices and their testimonials should be at the heart of any solution. At the same time, the Covid-19 pandemic should serve as a wake-up call to policy-makers to strengthen healthcare systems and ensure no one is left behind.
#2: “Addressing access challenges and geographical disparities experienced by vulnerable groups across Europe” (access to treatment, services and support)
At the beginning of the workshop, Mr Stanimir Hasardzhiev, Secretary-General of the Patient Access Partnership (PACT), delivered a presentation on “Addressing access challenges and geographical disparities experienced by vulnerable groups across Europe”. Mr Hasardzhiev also took the opportunity to provide a brief introduction to PACT, and the organisation’s Model Access Solutions initiative, which seeks to identify and promote selected evidence-based, workable solutions for better access to healthcare.
During the workshop, participants discussed the geographical disparities and access challenges that people living with BMP disorders experience, and identified the lack of appropriate information on the disease and its management as the most solvable challenge in the short term. Participants have highlighted that in order to address this unmet need, no legislation changes are necessary. Moreover, patient organisations at national level can take the lead and ensure that patients have access to relevant information, thus supporting them in making informed decisions that will ultimately improve patient outcomes.
#3: “Empowering women with BMP disorders and carers in the aftermath of Covid-19” (patient empowerment)
Ms Peggy Maguire, Director General of the European Institute of Women’s Health, opened the workshop with a presentation on “Health Promoting Gender Equity in EU Health Policy”, and referenced figures and studies highlighting the gender gaps in BMP research in Europe, including women’s under-representation in clinical trials. Ms Maguire concluded her presentation by sharing a snapshot of recent policy developments on the topic.
During the workshop, participants agreed that in order to improve patient empowerment among women with BMP disorders, the lack of communication with healthcare professionals was the most solvable challenge to address in the short term. Based on the discussions, there was a consensus that healthcare professionals were too quick to incorrectly diagnose depression and mental health problems among female patients. Participants noted that to achieve a feasible and pertinent result, beneficial both in the short and long term, raising awareness and educating healthcare professionals is crucial. Through activities at local level, such as educational workshops and awareness-raising campaigns, communities can tackle the stigma that women’s health is somehow lesser. These interventions should be based on a multi-stakeholder approach with cross-sectional cooperation from policy-makers, healthcare professionals, patients and those most vulnerable.
Based on the identified challenges, the Interest Group will now look to assess how EU-level action can help to support the advancement of the priority issues identified. Best practice interventions in the wider healthcare space will be sought via desk research and a call for solutions. Shortlisted solutions will be presented and discussed with key stakeholders at the next meeting of the Interest Group that will take place on 19 November, and will form the basis of the MEP Interest Group’s direction/workplan in 2022.
The co-chair of the Interest Group, MEP Jarosław Duda (EPP, Poland) closed the event by calling for attendees to take all the ideas discussed forward in order to address the complex needs of people with neurological and chronic pain disorders in Europe. MEP Duda noted the importance of raising awareness of BMP disorders to reduce stigma and discrimination, highlighting the need to move towards increased health equity in a post-Covid world.
Before concluding the event, EFNA awarded Mr Joop van Griensven the Lifetime Achievement Award for his tireless work and support in raising awareness and improving the lives of those living with chronic pain.