EUSEM Call for patient representatives with an interest in Emergency Medicine

Our friends at the European Patients’ Forum (EPF) have kindly asked to assist in their quest in search for patient representatives with a particular interest or experience in Emergency Medicine and who would be interested in participating in the following project:

“The European Society for Emergency Medicine (EUSEM) is currently working on a project to define an initial set of Quality Indicators for Emergency Departments in Europe. They will soon conduct a Delphi process that aims to define European wide quality standards for Emergency Care in the Emergency Departments. 

They are currently looking for patient representatives with a particular interest or experience in Emergency Medicine who can therefore provide an informed perspective.

The expected workload will not be onerous. The selected participant will receive a list of the items (50, in total) and will be asked to choose those quality markers which she/he regards as most important for the Emergency Departments. Every participant will have the possibility to select the 20 most important markers and to grade those for importance by rating them. This selection will be sent to the EUSEM office where it will be anonymized for further analysis”.  

If you know a patient representative with a particular interest or experience in Emergency Medicine who could be interested in participating, please don’t hesitate to contact policy@eu-patient.eu.

Thank you

 

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Breaking Depression – 1 in 4 people will be personally affected by mental health problems, such as depression, during their lives

About this project

Janssen, together with EUFAMI and GAMIAN are developing practical resources to help people living with depression and family carers to have productive conversations with their doctors. In order for these to be useful, we want to understand the real-life experiences of people living with depression.

To do this, we are interviewing people living with depression, family carers and healthcare professionals. The topics that will be discussed with people living with depression include:

  • The first time your loved one talked about depression with a doctor or specialist
  • Your experience of your loved one’s diagnosis
  • Treatment and symptom management
  • Advice you have for others in these situations

How would the interview work?

  • The virtual interview will be no longer than 1-hour and will take place w/c 19 July (exact date is still TBC). It will likely take place via phone, unless you have a specific preference for an alternative platform.
  • The interview questions will be shared ahead of the call.
  • You will be interviewed in English by a representative from Langland, a communications agency based in London supporting Janssen with the project roll-out. The call will be recorded for the purpose of insight gathering and notetaking. The recording will be deleted 6 weeks after the interview.
  • The insights gathered from the interview will inform the educational resources we will create. All responses you provide will be anonymised and will not be attached to identifiable factors, such as your name or profession.

If you are interested in participating in this project please read the invitation attached to this email carefully and contact EUFAMI Executive Director Mr John Saunders directly by Friday 17th September 2021 at executive.director@eufami.org.

This is an important project and your help and involvement will be greatly appreciated.

For further information please see here.

 

 

 

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EUFAMI will be virtually present at the upcoming ECNP congress

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GAMIAN-Europe calls for concrete action to empower those affected by mental ill health

Empowering people affected by mental ill health is beneficial to individuals and their carers. It is also crucial for developing more patient centered, efficient and cost-effective health systems.

This is the key message of a comprehensive Call to Action launched by GAMIAN-Europe today.
The Call, developed with the direct input from a variety of leading EU-level and national (mental) health stakeholders, addresses what can be undertaken concretely to overcome the current pervasive disempowering attitudes and behaviours towards people affected by mental ill health.

GAMIAN-Europe, a patient-driven organisation advocating the rights of those affected by mental ill health, developed this Call as one of its priorities as the huge prevalence and impact of mental health conditions cannot be overlooked: 11 % of the European population experience mental disorders every year. The proportion of national health budgets devoted to mental health ranges between 4% to 13% across the EU.

Mental health conditions go hand in hand with substantial costs and consequences impacting on individuals, families and carers, health and social systems, the economy and society as a whole. As a consequence, there is an obvious need to address these conditions in the most effective and appropriate way. Empowered patients, managing their own care and treatment, can help address this need.

While the notion of and need for patient empowerment has gained ground for physical health conditions in recent years, this is not generally the case for those affected by mental ill health. Likewise, when it comes to physical health, patients are generally viewed as sufficiently competent to self-manage their treatment and care – as opposed to those affected by mental health problems. The Call therefore underlines that most people with mental ill health, most of the time, do have the competence to self-manage their treatment and care.

Clearly, perceptions and services should be changed to reflect the need for more empowerment and patient involvement in the field of mental health. The Call to Action urges the various different categories of stakeholders involved to take appropriate action to effect progress in their specific areas of expertise.

The Call to Action has already been endorsed by some 25 EU-level and national (mental) health-related organisations as well as by a number of MEPs. GAMIAN-Europe is now warmly inviting all interested organisations to also endorse the Call, as widespread support for its principles and recommendations will stimulate and facilitate implementation across the EU.

The Call to Action is available here: https://www.gamian.eu/wp-content/uploads/GAMIAN_Call_to_action_Final.pdf

Introduction of the Call and list of endorsers: https://www.gamian.eu/call-to-action-2609/

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HORIZON EUROPE Project – Running in the FAMILY

Horizon Europe recently funded the project named ‘Running in the FAMILY – Understanding and predicting the intergenerational transmission of mental illness’, which will officially start on Oct 1st 2022. The Project will receive nearly 11 Mio Euro funding with a project duration of 5 years (Grant Agreement No 101057529).

Mental illness runs in families. The FAMILY consortium aims to improve the life of mentally-ill persons with novel prediction models that are based on better understanding the mechanisms of intergenerational transmission of mental illness. The objectives are to improve causal understanding and gain prediction power from the family context by the innovative combination of statistical modelling of genetically informed designs, causal inference, multimodal and multilevel normative prediction, and molecular mapping, brought by world-leading neuroscientific expertise of the consortium, and address key bioethical and social issues raised by the concept of intergenerational risk

transmission and risk prediction. FAMILY will bring together the largest existing human (epi)genetic and neuroimaging datasets from both within-family population cohorts and familial high-risk offspring studies, as well as utilise innovative animal models to shed light on pathways underlying intergenerational risk transmission. FAMILY will focus specifically on risk for mood and psychosis symptoms and diagnoses. In-depth causal analyses of how and when risk for mental illness occurs will help identify early risk and resilience factors and predict who is likely to be diagnosed or develop symptoms of mental illness. Advanced insights can uncover new targets for the development of preventive strategies to break the intergenerational cycle of mental illness and to support strengths and resource building. An immediate benefit will be to open direct translational perspectives to mental health care professionals by providing new (family-based) risk prediction tools for the early identification of adults and children at risk and to deliver ethical guidelines to guide its implementation. This will accelerate preventive and treatment intervention in vulnerable families and help target resilience strategies to prevent the transition from health to disease despite high familial risk.

EUFAMI is proud and excited to be part of FAMILY, together with research groups from the Netherlands (Erasmus Medical Centre Rotterdam, Radboud University Medical Centre), UK (University College London), Germany (Leibzig Institute for resilience Research, Concentris), Switzerland (Zurich University,; Vaudois University Medical Center, Lausanne), Letvia (Letvia University, Riga), Italy (University of Perugia, Perugia), Norway (Norwegian Institute of Public Health), Spain (Fundacio privada Clinic per a la Recerca Bomedica Barcelona, Fundación Investigación Biomedica Hospital Gregorio Marañón, Madrid), and Denmark (Region Hovedstaden) and with the European Society of Child and Adolescent Psychiatry (ESCAP).

EUFAMI (and ESCAP) will support FAMILY by seeking active engagement of family members, patients, and mental health care professions in research studies on the social and ethical consequences of risk prediction in clinical practice. Also, EUFAMI will support FAMILY with dissemination through the established communication channels focusing on clinical, scientific and policy making stakeholders. Through the collaboration with EUFAMI, FAMILY will have access to 38 family organisations in 26 countries throughout Europe.

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General Meeting 2022

EUFAMI Annual General Meeting took place virtually on Saturday 11th June 2022.

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