2014 – THE IBTA YEAR IN REVIEW

By 12th January 2015IBTA News

In 2014 our successful activities included:

(1) SERVING THE INTERNATIONAL BRAIN TUMOUR PATIENT AND CARER COMMUNITY AT SCIENTIFIC CONFERENCES, MEETINGS AND HIGH-LEVEL INITIATIVES

In 2014, the IBTA either exhibited at, participated in and/or provided a plenary or breakaway session speaker at a significant number of important brain tumour and cancer scientific conferences and meetings such as:

  • American Society of Clinical Oncology (ASCO)
  • Society for Neuro Oncology (SNO)
  • British Neuro Oncology Society (BNOS)
  • European Association of NeuroOncology (EANO)
  • Asian Society of Neuro Oncology (ASNO)
  • Britain Against Cancer (BAC)
  • European Organisation for Research and Treatment of Cancer (EORTC)
  • European Society of Medical Oncology (ESMO)
  • European Society of Pathology (ESP)
  • European Brain Council (EBC)

To date – over the nearly ten years of the IBTA’s existence - we have delivered more than 50 plenary and breakaway presentations describing the brain tumour and cancer patient/carer perspective at numerous scientific conferences as well as providing articles for publication in a number of journals and magazines.

In 2014, we also participated in a wide range of high level international initiatives regarding brain tumour and rare cancer patient advocacy issues.

These initiatives include:

  • The European CanCer Organisation (ECCO) Patient Advisory Committee (PAC)
  • Rare Cancers Europe (RCE)
  • Council of the British Neuro Oncology Society (BNOS)
  • European Patients Academy on Therapeutic Innovation (EUPATI)
  • European Society of Medical Oncology (ESMO) Cancer Patient Working Group (CPWG)
  • James Lind Alliance Neuro-Oncology Priority Setting Partnership (JLA N-O PSP)

In 2014, the IBTA visited ten countries and 19 cities in the course of its advocacy and awareness-raising activities.

OUR IMPACT. This sustained level of determined advocacy and awareness-raising activity provided networking and communication opportunities with thousands of stakeholders in the international cancer arena and significantly increased exposure of the challenges of brain tumours from the patient and caregiver perspective. Participating in such a wide range of initiatives and conferences gave a voice in these arenas to brain tumour patients and carers which would not exist had the IBTA not engaged in this work.

(2) EUROPEAN COMMISSION EXPERT GROUP ON CANCER CONTROL

IBTA Chair and Co-Director Kathy Oliver was appointed as alternate to fellow advocate Jan Geissler (from the chronic myeloid leukaemia/CML community) to represent Rare Diseases Europe (EURORDIS, of which the IBTA is a member) on the European Commission’s new Expert Group on Cancer Control.

The first meeting of the Expert Group was held in Milan in September 2014 and opened by EU Health Commissioner, Tonio Borg, and Italian Minister of Health, Beatrice Lorenzin. The Expert Group, chaired by the Commission, brings together representatives from Member State national authorities as well as representatives from patient groups, scientific and medical associations specialised in cancer, organisations working on cancer prevention, and industry.

OUR IMPACT: Together with the other members of the Expert Group, Kathy and Jan will assist with drawing up legal instruments, policy documents, guidelines and recommendations on cancer control, at the request of the Commission. The Expert Group will also, upon request, help prepare guidelines on cancer data including epidemiology, cancer screening, quality assurance and information on cancer prevention, clinical cancer research, as well as for cross-cutting themes related to cancer. Kathy and Jan - working at the very heart of European health policy decision-making - will be focussing on the challenges of rare cancers like brain tumours and CML with the goal of improving treatment, support, information and outcomes.

(3) PRINTING AND DISTRIBUTING 12,000 COPIES OF BRAIN TUMOUR MAGAZINE

In 2014 the IBTA printed 12,000 copies of a 114-page edition of Brain Tumour magazine (for the fifth year running) and distributed it for free to contacts in 109 countries. Brain Tumour magazine was also provided free to thousands of delegates at various major national and international brain tumour and cancer conferences in numerous countries around the world.

Digital copies of Brain Tumour magazine can be found here:

2014

2013

2012

OUR IMPACT. Based on feedback we receive from readers, Brain Tumour magazine is highly valued by all stakeholder groups. In 2014, we published 12,000 copies of the fifth annual edition of the magazine. The bulk of these were sent for free to recipients in 109 countries. The remainder were given out at major brain tumour and cancer conferences around the world.

The IBTA magazine helps unite the brain tumour community, bringing together stories of endurance and hope, scientific discoveries and noteworthy events, patient and caregiver perspectives - all in one lively publication. The magazine publicises the many issues involved in living with this disease and highlights the challenges facing all of the people on this journey.

Readership of the magazine is extremely diverse, comprising brain tumour patients, carers, medical and allied healthcare professionals, representatives of the pharmaceutical industry, regulators, key opinion leaders, politicians, members of professional societies, constituents in other disease specific patient organisations, etc.

Brain Tumour magazine is unique and even reaches parts of the developing world where, we are told, it especially brings comfort, inspiration, knowledge and hope to readers who would otherwise have little or no access to brain tumour information and support.

Here are some comments from our subscribers:

“I’ve been browsing IBTA’s annual magnum opus this weekend and as before have found this to be a comprehensive, informative and carefully balanced piece of work. Warmest congratulations…on such a brilliant, high impact publication.” (CEO of a brain tumour charity)

“Just wanted to congratulate you and the team on a great edition of the IBTA magazine, the articles are all really interesting and great to see so many people worldwide working on such an important disease.” (physiotherapist treating brain tumour patients)

“It’s really worth reading and highly valuable.” (assistant professor of neurosurgery)

“I enjoyed reading the many interviews of colleagues, patient and caregiver commentary, and discovering the large number of countries that have brain tumor programs and philanthropic efforts. It was a real eye opener for me; I had no idea programs existed in so many countries. You should be very proud of what you have accomplished.” (neuro oncologist)

“Your magazine is a tremendous source of information and HOPE for me…thank you and the IBTA for being there for us brain tumour patients.” (brain tumour patient)

“Thanks for compiling and distributing these newsletters and the recent "Brain Tumour" magazine. My daughter has an astrocytoma diagnosed last year, after collapsing at work. Your work empowers us through knowledge and reminds us that we are not alone. Thank you!” (Carer to a brain tumour patient)

(4) IBTA e-NEWS – OUR MONTHLY ONLINE NEWSLETTER

We also produced twelve editions of the IBTA e-News in 2014 which was sent electronically each month to over 6,000 highly relevant contacts around the globe. Our e-News reports on the latest developments in the international brain tumour community and beyond, encompassing the same breadth of readers as for the IBTA magazine.

In the second half of 2014 the IBTA e-News underwent a complete re-design and we engaged the services of a professional e-News editor to oversee the compilation and the distribution of the e-news.

OUR IMPACT. A survey of our entire e-News subscription database was undertaken in December 2014 to gauge reactions to the new-style IBTA e-News. Feedback was overwhelmingly positive. The IBTA e-News links members of the international brain tumour community and features the latest treatment advances, conference information, human interest stories and IBTA news.

“…this is one of my favourite reads – the blending of the patients and science is really important as it captures the essence of what the brain tumour field is about. As a scientist that is very inspiring and helps to keep us focussed on the kind of research that will ultimately help patients who are unfortunate to suffer these diseases.” (neuro oncologist)
“It is an excellent newsletter and I look forward to receiving it each month.” (pharma company representative)

“I find it an invaluable service.” (brain tumour patient)

“Your publication has more value to me because it is not limited to the USA updates.” (brain tumour patient)

“Continue your good work. I am so happy the IBTA exists.” (carer/former carer)

“I love it. I find it the most positive, comprehensive BT information. Thank you for focusing on the facts and not the ‘emotional/dark side’ of BTs, there are plenty of other websites and avenues for people to do this.” (carer/former carer)

“Great source of information put together by very committed and knowledgeable people. Thank you!

I appreciate having the IBTA e-News as I don’t know where else I would get this information with such detail…It gives us hope for the future with the promising results in research that are happening. My daughter is 29 years old with GBM…” (carer)

(5) THE FIRST WORLD SUMMIT OF BRAIN TUMOUR PATIENT ADVOCATES - PUBLICATION OF THE OFFICIAL REPORT

In 2013, the IBTA organised the First World Summit of Brain Tumour Patient Advocates in San Francisco, California which brought together for the first time more than 60 participants from 20 countries. A report of this ground-breaking event was completed in 2014 and a digital copy of the Summit report can be found online here http://issuu.com/ibta-org/docs/ibta-summit-report-2013 .

OUR IMPACT. The Summit provided participants with the opportunity to share challenges and solutions and to discuss their passion for improving outcomes for brain tumour patients around the world. On returning to their home countries, Summit participants were able to introduce new concepts, new practices and new energy into their work as a result of what they learned at the meeting from fellow advocates. One advocate was so inspired by the Summit that she went back to her home country and established the only national brain tumour support organisation in her region. Another advocate was inspired to set plans in motion for organising a major project highlighting the importance of encouraging more doctors to specialise in neurosurgery in her home country where there is huge unmet need in terms of surgical treatment for brain tumours.

The IBTA’s First World Summit of Brain Tumour Patient Advocates was consistently rated “very valuable” and “very relevant” by participants.

Comments included the following:

“Great overview of the international community.”

“We have a lot of [new] ideas to explore”

“I felt humbled by both the vast knowledge available and the struggles of many. This summit has forged my resolve to do as much as I can for the advocacy of brain tumour patients.”

“All participants brought valuable information to the table.”

“So grateful for all the information.”

“Hoping there will be more [Summits] in the future.”

“Very useful.”

“We might be from different countries and continents. But what binds us and brings us together is our common quest to understand everything that we can about brain tumours and share our acquired knowledge with those less privileged. Thank you s much for inviting me to be a part of the Summit and welcoming me into the warm and hearty family of the IBTA. I hope to take back my learnings [to India] and the amazing work that people are engaged with across the world and see how we can modify and localise them for our patients/survivors/caregiver and volunteers back home.”

6) INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK AND THE WALK AROUND THE WORLD FOR BRAIN TUMOURS

During 2014 we also attracted (non-financial) support from over 160 brain tumour and cancer-related organisations for the seventh edition of our two awareness-raising projects: the International Brain Tumour Awareness Week and the Walk Around the World for Brain Tumours

OUR IMPACT: The Walk Around the World for Brain Tumours creates a sense of family and bonding amongst the community of patients, carers and families. This sense of camaraderie and a common purpose transcends national boundaries and cultures and broadens individual circumstances so people feel part of a larger group rather than bearing the stresses and strains of their individual journeys alone. The International Brain Tumour Awareness Week fosters a similar sense of unity amongst the community. Countries in which there were no brain tumour awareness-raising activities prior to the existence of the IBTA now proudly organise sponsored and unsponsored walks, conferences, media releases, art shows and other activities as part of the "Walk" and "Week" events.  Coverage of the Week and Walk is provided in Brain Tumour magazine.

(7) SOCIAL MEDIA PRESENCE

In 2014, and responding to current trends in digital communications, the IBTA stepped up its social media presence by establishing a new Facebook page (https://www.facebook.com/theIBTA ) and increasing its Twitter traffic (https://twitter.com/theIBTA ). We regularly post messages on treatment advances, breaking brain tumour news and other subjects for the international brain tumour community on both sites and have established a sold online following.

OUR IMPACT: The IBTA Facebook page is now an important forum for engaging with our supporters from around the world, keeping them informed of our activities, such as participation in meetings and conferences, and alerting them to breaking news about brain tumours. It has also become a highly effective channel for promoting our key awareness raising campaigns: “Walk Around The World for Brain Tumours” and “International Brain Tumour Awareness Week”. In the past year we increased Total Page Likes five fold. Key metrics such as Post Reach and People Engaged have tracked higher throughout the year, with a major spike in activity experienced during the International Brain Tumour Awareness Week campaign.

Our Twitter account @theIBTA continues to experience high growth, with the number of Followers increasing by 51% year on year to now exceed 1,240. We are also seeing consistent engagement with Twitter users (measured by number of retweets, mentions and favourites). Weekly Total Views often exceeded 1,500 with a high of 3,404 attained during International Brain Tumour Awareness Week. We are regular contributors to brain tumour related Twitter events, such as #BTSM (brain tumour social media) and #BrainTumorThursday.

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