SAFE Working Conference and General Assembly 2018

SAFE Working Conference and General Assembly 2018

SAFE held this year’s Working Conference and the General Assembly in Berlin, Germany. The event was very well attended, with over 100 delegates and representatives of SAFE’s industry partners.

The hosting organisation was the Stiftung Deutsche Schlaganfall Hilfe, SAFE’s member organisation from Germany, whose President, Michael Brinkmeier presented their latest projects to the auditorium. SAFE President Jon Barrick and ESO Board member Heinrich Audebert gave presentations on how the Stroke Action Plan for Europe 2018-2030 was created, including the overarching recommendations on the seven domains, from Primary Prevention to Life After Stroke.

The working conference was dedicated to updating our members on the current projects and presenting plans for the next period, until 2020 and beyond.

Stroke Support Organisation Faculty Tool was completed just before the SAFE’s annual gathering and SSOFT Project Director, Victoria Brewer gave a wrap up, summarizing the achievements and giving recommendations for future use and increased engagement.

You can access the complete Working Conference Agenda here.

On Friday, 30th November, SAFE had a General Assembly. Three new Board members were elected: Grethe Lunde from Norway (Norsk forening for slagrammede (NFS)) as a North Cluster Representative, Chris Macey from Ireland (Irish Heart Foundation) as Treasurer and Marina Charalambous from Cyprus (Cyprus Stroke Organisation) as Board Member at Large.

Two new organisations were ratified and became full SAFE members: Porážka.sk from Slovakia and CEREBRUM from Czech Republic.

SAFE awarded stroke support organisations from the following countries: Turkey, Spain, Serbia,Croatia, Portugal, Iceland and Cyprus for their work in fighting stroke, supporting survivors and their families and building the patient voice during 2018.

In addition, SAFE Annual Report and Strategy were discussed, as well as the upcoming SAFE political activities at EU level.

 

 

Podcast #3 – Three-dimension view on stroke

Podcast #3 – Three-dimension view on stroke

Stroke can happen to anyone, anytime. We spoke with Hrvoje Jurlina, MD, who has a unique perspective on stroke, being a medical professional, a young stroke survivor and a caregiver who recently lost his father to stroke. Hrvoje Jurlina is the Second Vice-President of Croatian Stroke Society, which is a SAFE member.

Please click on the picture below to access the audio file.

Stress-induced effects on heart blood flow differ for men versus women

Stress-induced effects on heart blood flow differ for men versus women

First published on ScienceDaily.com

Some patients with coronary artery disease have inadequate blood flow to the heart muscle during periods of mental/emotional stress. This condition — called “mental stress-induced myocardial ischemia” (MSIMI) — is related to the severity of plaque buildup in the coronary arteries in men but not women, reports a study in Psychosomatic Medicine: Journal of Biobehavioral Medicine, the official journal of the American Psychosomatic Society. The journal is published in the Lippincott Portfolio by Wolters Kluwer.

Mental stress-induced myocardial ischemia occurs in both men and women, although younger women tend to have more of this phenomenon. While MSIMI is linked to worse cardiovascular outcomes in both sexes, there may be sex differences in the mechanism through which stress can trigger MSIMI, according to new research by Viola Vaccarino, Md, PhD, and colleagues, of Emory University School of Public Health and School of Medicine, Atlanta.

Heart Response to Stress Linked to Coronary Plaque Severity in Men, but Not Women

The researchers examined the sex-specific association between coronary plaque buildup (obstructive coronary disease) assessed from angiograms and MSIMI in 276 participants — 141 men and 135 women — with recent myocardial infarction (heart attack). The study targeted young and middle-aged adults (under age 61). All participants underwent conventional stress testing to evaluate myocardial blood flow in response to a physical or pharmacological challenge (either an exercise stress test or a pharmacological stress test) .

The patients also underwent a mental stress test, which evaluated myocardial blood flow in response to a stressful situation (a public speaking task). Based on a reduction in myocardial blood flow during this stressful challenge, 17 percent of patients were classified as having MSIMI.

Women had a higher rate of MSIMI (20 percent) than men (15 percent). Twenty-seven percent of patients had conventional stress-induced myocardial ischemia (CSIMI). Only 10 percent of patients had both MSIMI and CSIMI.

In both men and women, the presence of CSIMI was associated with greater obstructive coronary disease severity. For each one-unit increase in severity score, the likelihood of CSIMI increased by about 50 percent, after adjustment for other factors.

In contrast, the presence of MSIMI was associated with more severe plaque buildup only in men: for each one-unit increase in severity score, the likelihood of MSIMI nearly doubled. For women, MSIMI was unrelated to obstructive coronary disease severity.

“There is growing evidence that psychosocial stressors may promote the development and progression of cardiovascular disease in susceptible individuals,” according to the authors. However, the relationship between MSIMI and obstructive coronary disease, which means blockages in the major coronary arteries supplying blood to the heart muscle, has been unclear. Women are more likely than men to develop myocardial ischemia without coronary obstruction.

The results support the hypothesis that MSIMI may develop via different mechanisms in women versus men. Consistent with previous findings on sex differences in heart disease, it may be that MSIMI in women mainly reflect abnormalities other than blockage of the coronary arteries, such as malfunction of the smaller coronary blood vessels (microcirculatory dysfunction).

The sex differences may have important implications for understanding sex-specific vascular effects of psychological stress in general and the mechanisms of MSIMI in particular, since most previous studies of this issue have focused on men. Dr. Vaccarino and colleagues conclude, “These results suggest that MSIMI must be driven by alternative mechanisms especially among women, and provide motivation for further research to understand sex-specific mechanisms for the effects of mental stress on myocardial ischemia and long-term outcomes.”

Story Source:Wolters Kluwer Health. “Stress-induced effects on heart blood flow differ for men versus women.” ScienceDaily. ScienceDaily, 26 November 2018. <www.sciencedaily.com/releases/2018/11/181126154101.htm>.

Angels Initiative: Overall winner of this year’s EFPIA Health Collaboration Award

Angels Initiative: Overall winner of this year’s EFPIA Health Collaboration Award

On November 22nd, 2018 EFPIA (The European Federation of Pharmaceutical Industries and Associations) announced winners of this year’s Health Collaboration Award. The overall winner is the Angels Initiative project.

With over 80 entries received from across Europe, The Health Collaboration Awards gives an opportunity to showcase collaborative projects that have benefitted the lives of patients across Europe. Giving her reaction, EFPIA Director General, Nathalie Moll said “As we seek to address the challenges faced by patients and our healthcare systems, partnership and collaboration will be key. No one sector has all the answers and by putting patients at the heart of projects, pooling our resources and expertise and finding new, innovative ways of addressing health needs it is amazing what we can achieve. The entries and winners of this year’s Health Collaboration Awards are fantastic examples of that approach and I hope will provide food for thought and inspiration to us all.”

SAFE is proud to be part of the Angels Initiative project, providing critical information to stroke patients when they most need it, already in the stroke unit. SAFE’s contribution to this amazing project started in May this year simultaneously in 12 European countries: Spain, Serbia, Poland, Czech Republic, Latvia, Croatia, Macedonia, Greece, Ukraine, Georgia, Hungary and Turkey.

In selected hospitals in these countries, stroke patients and their carers will be provided with information on stroke and important next steps on their path to recovery. The patient-focused materials are made of five brochures, including a list of national, regional and local stroke support organisations, with their contact details, in order that patients and carers can access further support in the months and years following their stroke. The information provided in the brochures are kindly provided by the Stroke Association UK and then translated to all project languages, applying the information standard procedure for the translation.

About EFPIA

The European Federation of Pharmaceutical Industries and Associations (EFPIA) represents the pharmaceutical industry operating in Europe. Through its direct membership of 36 national associations and 40 leading pharmaceutical companies, EFPIA’s mission is to create a collaborative environment that enables our members to innovate, discover, develop and deliver new therapies and vaccines for people across Europe, as well as contribute to the European economy. Our vision is for a healthier future for Europe. A future based on prevention, innovation, access to new treatments and better outcomes for patients.

About Angels Initiative

Every 30 minutes a stroke patient who could have been saved, dies or is permanently disabled, because they were treated in the wrong hospital.
Angels Initiative is building a global community of stroke centres and stroke-ready hospitals, working every day to improve the quality of treatment for every stroke patient.
The goal is to get 1500 stroke-ready hospitals around the world by May 2019.
For more information about Angels Initiative, please visit www.angels-initiative.com

 

 

Stroke Support Organisation Faculty Tool Completed as #SSOFT Module 6 goes live today

Stroke Support Organisation Faculty Tool Completed as #SSOFT Module 6 goes live today

Brussels, 21st November 2018 – As the second biggest killer in the world, the response to Stroke needs an army of advocates to ensure  the message that it is preventable, treatable and beatable is implemented. SSOFT is an excellent tool to educate people on the principles of stroke advocacy. It will strengthen their ability to advocate for better stroke prevention, treatment and after care. This module is vital as a contribution to effective public campaigning. We believe that SSOFT will provide inspiration for future stroke advocates to make a real-life change, says Jon Barrick, SAFE President.

The sixth and final eLearning module of the Stroke Support Organisation Faculty Tool (SSOFT) is published today at the following address www.ssoft.info, thus marking the completion of this innovative eLearning tool on stroke support organisation and the principles of stroke advocacy.

The SSOFT’s sixth module focuses on the skills and principles around developing effective public advocacy campaigns.

SSOFT’s development and execution was successfully led by Victoria Brewer, SAFE Project Director, who stressed from the beginning of the project that the members of the SAFE had to be central to the whole process. SAFE members have been actively involved in the development of the content by either testing the modules, providing cases studies or sharing their experience in interviews. These examples have brought much of the content to life by providing real world cases studies of how the knowledge contained in the modules can be applied.

“The opinion of the people who test the program [has been] important. Therefore, SSOFT is exactly what should be: a tool ‘for our members by our members’.” Nenad Nikolić Moždani Udar, the Serbian Stroke Association

The release of the final module marks a significant stage in SSOFT’s development with this stage of development being completed. SAFE is currently exploring future expansion options for SSOFT

“I hope that the tool will never be truly “finished” but remain a live environment that always adapts to the latest developments and experiences.” André de Rosa Spierings, National Board member of Hersenletsel, Netherlands.

About SSOFT’s 6th module

SSOFT’s sixth module focuses on the skills and principles around developing effective public advocacy campaigns. The module is broken down in to five bitesize sections, which cover:

6.1 Public advocacy – focuses on the role of public engagement in advocacy & how to dispel stroke myths to drive change.

6.2 Stroke Community & Mass Campaigning – covers how to build a stroke community & campaign to a large audience

6.3 Publicity – demonstrates how to manage publicity by engaging with print & broadcast media

6.4 Traditional Media – helps learners to understand the role of traditional media &and learn how to work with journalists & editors

6.5 Social Media – examine the role of social media in bringing momentum for change.

About SSOFT

SSOFT is an innovative online eLearning advocacy tool being developed by Stroke Alliance for Europe (SAFE), in partnership with the European Stroke Organisation (ESO).

“I think this is just the beginning; …. I envisage this resource as further strengthening the European stroke patient network and in time the global stroke patient network.” @BelsonSarah

This online learning platform provides knowledge and training on how the creation of effective advocacy activities and campaigns to deliver positive change at a local and national level on stroke prevention, treatment and care. The eLearning platform includes six modules that provide information on:

Module 1: Stroke Support Organisations (SSOs)

Module 2: Making Change Happen

Module 3: Use of Evidence

Module 4: Role of Patient Voice

Module 5: Health & Care System Advocacy

Module 6: Public Advocacy

The modules and learning environment are accessible via the SSOFT website through a simple registration process. Visitors to the website can also learn more about SSOFT, SAFE and ESO, find their nearest SAFE Stroke Support Organisation (SSO) as well as hear from SAFE members about their experiences.

For more information, please send an email ssoft@safestroke.eu or visit www.ssoft.info

Acknowledgments

SAFE would like to take this opportunity to thank and acknowledge the contributions made by those who have helped in the development of SSOFT and module 6.

Stroke Alliance for Europe Board, who have been involved at every stage of development of this module.

The Peer Reviewers for module 6:

  • Stiftung Deutsche Schlaganfall-Hilfe (Dr Markus Wagner)
  • World Stroke Organization (Anita Wiseman)
  • Irish Heart Foundation (Chris Macey)
  • Different Strokes Charity (Austin Willets)
  • Hellenic Alliance/Action for Stroke Support Organization (Dr Hariklia Proios)
  • Macedonian Stroke Association (Dr Anita Arsovska)

Our members who have shared their experiences and knowledge in the video interviews used within the module:

  • Adam Siger – Fundacja Udaru Mózgu, Poland
  • Anita Arsovska – Macedonian Stroke Association
  • Chris Macey – The Irish Heart Foundation, R.Ireland
  • Hrvoje Jurlina – HDPMU Croatian Stroke Society, Croatia
  • Francesca Romana Pezzella – ALICe, Italy
  • Jon Barrick – Stroke Alliance for Europe (SAFE)
  • Mara Cochetti – ALICe, Italy
  • Nenad Nikolić – Moždani Udar, Serbia
  • Pnina Rosenzweig – Neeman Association for Stroke Survivors, Israel

Our member and partner organisations who have collaborated in the development of the module content:

  • World Stroke Organization
  • European Stroke Organisation
  • Stroke Association UK

And all those who participated in the User Acceptance Testing of module 6.

We would also like to thank the project sponsor Bayer Healthcare who have supported this project through an education grant.

About SAFE

The Stroke Alliance for Europe (SAFE) a non-profit-making organisation formed in 2004. It is the voice of stroke patients in Europe, representing a range of patient groups from 30 European countries.

SAFE’s goal is to decrease the number of strokes in Europe by advocating for better prevention, access to adequate treatment, post-stroke care and rehabilitation.