The future of brain, mind and pain advocacy, Nov 2020

The future of brain, mind and pain advocacy, Nov 2020

THE BRAIN, MIND AND PAIN INTEREST GROUP MEETING REPORT
10 November 2020

On 10 November 2020, the MEP Interest Group on Brain, Mind and Pain (BMP) organised a virtual event on the future of BMP advocacy. Given the current context, which is increasingly impacting the healthcare policy landscape, the main objective of the event was to identify and leverage public health priorities and actions for those affected by neurological and chronic pain conditions. The event also sought to provide an overview of the Interest Group’s new policy direction, and was an opportunity to launch a set of appendices to update the group’s central policy document – the Book of Evidence. It also aimed to gather feedback on its Roadmap to Change, which is a plan for action for the next two years.

The virtual meeting brought together key stakeholders from the BMP community, other disease specific groups and relevant third-party organisations. High level policy makers also attend, including: Dr Bente Mikkelsen – World Health Organization, Mr Stefan Schrek – European Commission, Katarzyna Ptak – European Commission, MEP Isabel Wiseler-Lima (Luxembourg, EPP), MEP Cristian Busoi (Romania, EPP), MEP Tilly  Metz (Luxembourg, Greens/EFA) and MEP Marisa Matias (Portugal, GUE/NGL). MEP Sirpa Pietikäinen (Finland, EPP) and MEP Kateřina Konečná (Czech Republic, GUE/NGL) also shared their input and sent video messages.

The opening plenary was an opportunity to better understand and discuss the place of BMP disorders in non-communicable disease policy, as well as their position within the EU health and research priorities post-pandemic. Following this session, three parallel breakout sessions took place that allowed for more interactive discussions focusing on the core themes of the Interest Group: stigma, access and patient empowerment.

 

Key take-aways and outcomes

During the event, there were a number of cross-cutting issues that were identified as key priorities for the Interest Group over the next two years. These issues are as follows:

  • The low awareness of the true burden of BMP disorders is the biggest challenge that the community is facing across all three thematic areas, highlighting the importance of ensuring recognition of the burden of these disorders, as well as the need for more resources and effective policies.
  • Given that BMP disorders are responsible for the largest disease burden among non-communicable diseases, the Interest Group should expand its advocacy efforts and raise awareness around the integration of BMP health into EU / global priority areas in NCDs.
  • Covering the healthcare needs of people with BMP disorders during the COVID-19 recovery is more critical than ever, and the Interest Group must ensure that these needs are addressed and part of the COVID-19 recovery plan across the EU, benefitting at the same time from the increased EU budget for healthcare.
  • Uniting and strengthening the voice of the broader community, as well as developing new synergies with patient/public health organisations, policy and decision-makers, medical societies and other relevant stakeholders will be key to overcome the challenges that people living with BMP disorders are currently facing.

 

Stigma: Getting those affected by BMP disorders re-integrated in society and back to work post-pandemic

  • Although stigma, discrimination and isolation of people with BMP disorders are reportedly high under normal circumstances, the COVID-19 pandemic has worsened the situation for many patients, and highlighted the need for coordinated action to overcome these issues.
  • The lack of understanding, awareness and recognition was identified as the main challenge faced by people living with BMP disorders, and was seen as being connected to the under-estimation of BMP disorders prevalence and impact. The invisibility of the conditions reinforces their devastating impact on people, their families and carers.
  • Participants discussed the impact of gender bias on stigma and isolation of people with BMP disorders, as well as the need to consider more specifically the role that gender differences play in brain and mental health and how it can be addressed.
  • Adopting policies and implementing actions that strengthen the social inclusion of people with disabilities and patients suffering from BMP conditions through improved access to flexible employment and education opportunities should be a priority area for the BMP Interest Group.
  • Education and awareness of employers, younger generations, policy-makers and healthcare professionals to reframe the economic and societal impact of BMP disorders are essential steps towards ensuring greater social inclusion of people with BMP disorders.

Access: Building forward better – creating more resilient health systems post-pandemic to ensure equitable and timely access to treatment, services and support

  • The underfunding of treatment, services and support represents the main challenge that the BMP community is experiencing in the area of access. In order to overcome this, the Interest Group could facilitate more consensus on the models of care which are cost-effective.
  • To overcome challenges in access, the Interest Group should also continue advocating for neurology / chronic pain-related action plans to be integrated into broader health strategic frameworks.
  • Working together with medical societies is key for generating evidence on the burden of BMP disorders, as well as the lack of workforce to support patients. Where evidence already exists, it is important to ensure that it is used as cohesively and efficiently as possible.
  • Partnerships with the medical community are also essential to address the low awareness of BMP disorders among healthcare professionals, and advocate for better training and continuous education programmes.
  • Digital solutions can support healthcare delivery across all stages of the patient pathway by facilitating more personalized treatments, ensuring better access to care and measuring health outcomes.
  • Improving timely access based on patient preferences and reforming patient care pathways to support better health outcomes should be prioritized in the future plans of the Interest Group.

Patient empowerment: Ensuring the digital transformation of healthcare in the EU promotes patient empowerment

  • In order to address the lack of trust among BMP patients in the area of data governance, the Interest Group should advocate for increased patient involvement in the discussions led by the European Commission around a regulated data framework, which should respond to the needs of the BMP patients and encourage the adoption of self-management solutions.
  • Health literacy improvement and the quality of patient information on BMP disorders should be addressed by the Interest Group through identifying best practices on patient empowerment, and launching awareness raising campaigns and educational programmes with a focus on the needs of BMP patients . This could strengthen structured dialogue and enable collaboration with healthcare professionals.
  • The equitable access to digital health literacy will be essential in empowering BMP patients. The Interest Group should advocate for the new ways of interactions that are being developed, such as telemedicine, to not exacerbate the existing inequalities, but encourage meaningful and tangible engagement.

 

Next steps

Based on the feedback received during the event, the BMP Interest Group has finalized the Book of Evidence appendices, as well as the Roadmap to Change, which are now published here.

Starting 2021, the Interest Group will develop and share with all members, partners and relevant stakeholders a detailed project plan and timelines for further activity across the three thematic areas.

In the meantime, as part of its Training Initiatives for Neurology Advocates [TINA], the European Federation of Neurological Associations has created a series of e-learning modules, which aim to quickly upskill patient advocates on how they can effectively advocate in a virtual world A first module on ‘EU Advocacy for the BMP Community’ is available now and provides an overview of how the EU institutions work, how patient groups can influence policy-makers of get involved on EU level. Further modules will be released in the coming weeks. To sign up, visit: www.efna.net/elearning

 

WANT TO LEARN MORE ABOUT US? HERE’S HOW.

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Read our key messages document.

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Read our Book of Evidence (or download it now and read it at your leisure! )

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More information in your language

DG SANTE
Read a statement of support from Anne Bucher, Former Director-General DG SANTE.

EU Commission



The Interest Group is funded through unrestricted grants from Merck, Grünenthal, Teva, Novartis, UCB, Lundbeck, Roche, Ipsen and Pfizer.

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