CODE officially launched in Germany at the German Cancer Congress 2018, event report published

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On Thursday 22nd February 2018, the Collaboration for Oncology Data in Europe (CODE) was formally launched in Germany at the German Cancer Congress 2018 in Berlin. The event was entitled “Access to real-world cancer data: challenges and opportunities to improve patient care and financial sustainability across Europe.”

Keynote speaker Professor Frank Griesinger, Director of the Department of Haematology and Oncology at Pius-Hospital Oldenburg, provided a clinical perspective on the importance of having access to data to inform treatment decisions and the challenges that are faced by oncologists in Germany today. He stressed that “real-world data is very important and helpful because it is more representative of a broad spectrum of patients”.

Dr Ashley Woolmore, CODE Lead, outlined the mission for this project and said, “CODE aims to create an efficient, pragmatic way to gain powerful insight that can help improve access to care and to be a catalyst for further clinical research”.

The event also saw active engagement between the event participants and the panellists:

  • Professor Christian Burke (Medical Director at University Hospital Ulm)
  • Professor Dirk Arnold (Head of Department Oncology in the Section of Haematology & Palliative Care at Asklepios Klinik Altona)
  • Tino Sorge (Member of Bundestag and Health Committee; Rapporteur for eHealth and Health Economy at Conservative Parliamentary Group)
  • Professor Herbert Rebscher (Managing Director of Institute for Health Economics and Healthcare Research; former CEO of DAK)

Please click here for a full report of the event in English.

Please click here for a full report of the event in German.

Report of CODE Spain Launch event “Advances and Challenges of Information in Oncology” published in English and Spanish

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On Tuesday 28th November 2017, the Collaboration for Oncology Data in Europe (CODE) was formally launched in Spain at the “Advances and Challenges of Information in Oncology” event in Madrid.

Maria Luisa Lara, Country Lead CODE Spain, introduced CODE and the Oncology Data Network (ODN), highlighting that the project had been specifically developed to help meet the challenges identified by the different speakers. The data collated by the ODN will allow the oncology community to have access to up-to-date information on the use of medicines in the treatment of cancer patients, helping them in their decisions about prescribing treatments in an age of increased personalisation.

The participants heard presentations from:
• Ruth Vera, President of the Spanish Society of Medical Oncologists (SEOM)
• Noema Paniagua (General Director of the Spanish Association Against Cancer, AECC)
• Ricardo de Lorenzo y Montero (President and General Director of De Lorenzo Abogados)
• Esther Holgado (Associate Member of the Foundation for Oncology Excellence and Quality, ECO Foundation)
• Jesús Galván Romo (Vice President of the Spanish Society of Health Informatics, SEIS)

The speakers were followed by a panel of experts in the field of health management, moderated by Ignacio Para Rodriguez-Santana, President of the Bamberg Foundation:
• Cristóbal Belda (Director of R&D and Innovation at HM Hospitales)
• Enrique Grande (Head of Clinical Research at MD Anderson Foundation, Spain)
• Jesús Castellano (Director of Analysis and Process Design, D.G. Health Information Systems, Madrid Health Service)

Please click here for a full report of the event in English.

Publicación del Informe del evento de presentación de CODE España “Avances y Retos de la Información en Oncología”

El pasado 28 de noviembre de 2017 se presentó oficialmente en España la iniciativa CODE (Collaboration for Oncology Data in Europe) en el evento “Avances y Retos de la Información en Oncología” en Madrid.
Maria Luisa Lara, Country Lead de CODE en España, presentó CODE y la red ODN (Oncology Data Network). Los datos recogidos en esta red permitirán a la comunidad oncológica conocer el uso de medicamentos en los tratamientos de pacientes oncológicos, maximizando el conocimiento en el corto plazo y proporcionando conocimiento a los clínicos para favorecer una prescripción de tratamientos más adecuado a cada paciente.

En el evento se contó con la participación de varios ponentes:
• Ruth Vera (Presidenta de la Sociedad Española de Oncología Médica, SEOM)
• Noema Paniagua (Directora General de la Asociación Española Contra el Cáncer, AECC)
• Ricardo de Lorenzo y Montero (Presidente H y Director General De Lorenzo Abogados)
• Esther Holgado (Miembro Asociado de la Fundación ECO)
• Jesús Galván Romo (Vicepresidente de la Sociedad Española de Informática de la Salud, SEIS)

Posteriormente tuvo lugar un panel de expertos, moderado por Ignacio Para Rodríguez-Santana, presidente de la Fundación Bamberg, en el que participaron:
• Cristóbal Belda (Director de I+D+i de HM Hospitales)
• Enrique Grande (Responsable Investigación Clínica de Fundación MD Anderson, España)
• Jesús Castellano (Director de Análisis y Diseño de Procesos, D.G. Sistemas de Información Sanitaria. Servicio Madrileño de Salud)

Por favor, pinche aquí para acceder al informe completo del evento.

CODE to be formally launched in Germany at the Deutscher Krebskongress 2018 in Berlin

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The Collaboration for Oncology Data in Europe (CODE) is being formally launched in Germany at the 33rd Deutscher Krebskongress in Berlin from 21st to 24th February 2018.

The launch event, titled “Access to real-world cancer data: challenges and opportunities to improve patient care and financial sustainability across Europe“, will be held on 22nd February 2018 from 18:00 to 20:00 pm at CityCube Berlin. Attendance is by invitation only.

If you would like to meet with the CODE team during the Congress, please get in touch with us by emailing Joerg.Meyer@iqvia.com.

The French Information Governance Authority (CNIL), grants authorisation for establishment of the Oncology Data Network

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The French information governance authority, Commission Nationale de l’Informatique et des Libertés (CNIL), has positively approved IQVIA’s application for the Oncology Data Network (ODN) in France (click here for the official announcement ).  In reaching their conclusion, the CNIL stated their position that the establishment of the ODN is in the public interest[1]. This authorisation provides the legal grounds for the creation of the required database in France.

The ODN is supported by the Collaboration for Oncology Data in Europe (CODE) which is led by IQVIA and is designed to collate up-to-date information on the actual use of anti-cancer medicines around Europe for all cancers, all patients and all treatment centres who wish to join.

Ashley Woolmore, CODE Lead and Vice President, Real World Insights at IQVIA stated, “The CNIL is a highly respected institution, both in France and across Europe and the entire CODE team is proud to have achieved the CNIL’s authorisation to proceed with the ODN in France.   The CNIL conducted a rigorous review process. Their approval reflects the extensive measures in terms of technical architecture and governance that we have integrated into the design of ODN to ensure data privacy.  I believe that the ODN has the potential to offer significant benefits by both informing patient care and also supporting novel payment agreements to help address the challenges of financial sustainability across Europe.”

The Country Lead for CODE in France, Claire Lamotte, added “This is a major milestone in the implementation of the ODN in France. We have already had significant interest from hospitals across the country. Now that we have CNIL authorisation, we are looking forward to the platform going live with the first centres in the very near future.”

For more information, please contact: Claire Lamotte 

[1] Relevant legislation: l’article 8-IV de la loi n°78-17 du 6 janvier 1978 modifiée relative à l’informatique, aux fichiers et aux libertés

Amgen joins the Collaboration for Oncology Data in Europe

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Amgen has confirmed its membership of the Collaboration for Oncology Data in Europe (CODE), which is being led by IQVIA (formerly QuintilesIMS), joining founding members Bristol-Myers Squibb; Eli Lilly and Company; Merck; Pfizer; and AstraZeneca.

The Collaboration for Oncology Data in Europe (CODE) is supporting the creation of a large-scale Oncology Data Network that will collate comprehensive, up-to-date data to describe how anti-cancer medicines are actually used in clinical practice.

For the first time, treatment centres joining the Oncology Data Network will be able to explore in near real-time, clinically robust, real-world information that will describe how anti-cancer medicines are being used in today’s clinical practice, for which patient groups, and in which combinations and sequences, across Europe.

The aim is to collaborate with 200 cancer treatment centres in seven European countries in the first three years, scaling potentially to an estimated 2,000 treatment centres across Europe over 10 years.

Gavin Lewis, VP for Value, Access & Policy Europe at Amgen said, “We are delighted to join the CODE initiative, which has a large potential to develop new insights and data to support patient access to oncology medicines. The information gathered through this collaboration should improve our understanding of the treatment pathways and utilization of oncology medicines, including the growing number of multiple indication and combination oncology medicines. Getting near real-time data on how oncology medicines are being used is also an important step towards developing new innovative payment models for oncology medicines, something Amgen is actively exploring with healthcare stakeholders to help create sustainable solutions for patients to access new innovative medicines”

Dr Ashley Woolmore, CODE Lead and Vice President, Real-world Insights Global Team, Head of European Data and Evidence Networks, IQVIA (formerly QuintilesIMS) said, “I am delighted that Amgen has decided to join the CODE initiative. The members of CODE believe that creating the Oncology Data Network (ODN) will pave the way for the European oncology community to increase its understanding of today’s clinical practice. We have already had very encouraging feedback from the clinical community, particularly from the members of the Clinical and Analytical Steering Committee, the independent scientific committee for CODE and the ODN. In addition, by understanding how anti-cancer medicines are being used we will help create the necessary foundation for new approaches to access to innovative anti-cancer therapies, helping to connect treatment innovation to patient benefit and broadening the opportunity for individual patients to receive the therapies that are appropriate for them.”

CODE to be formally launched in France at the 13th Biennale Monégasque de Cancérologie on 31 January – 3 February 2018, Monaco.

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The Collaboration for Oncology Data in Europe (CODE) initiative is being formally launched in France at the 13th Biennale Monégasque de Cancérologie which is taking place in Monaco from 31st January to 3rd February 2018. The launch event will be held on the 1st of February 2018 from 5:30 pm to 6:30 pm in Van Dongen room at the Grimaldi Forum Monaco.

If you would like to attend this launch event or arrange a meeting with the CODE team during the 13th Biennale Monégasque de Cancérologie, please contact us at

If you want to know more on how to join the Oncology Data Network please contact us at Contact.

The CODE Information Access and Publication Policy: anticipating broader access to information generated by the Oncology Data Network

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A broad range of organisations are involved in clinical practice and policy development around cancer care. To help achieve our shared goals of enhancing patient care and helping address the challenges of financial sustainability, it is vital to ensure these stakeholders have access to information on the use of anti-cancer medicines in cancer treatment. Anticipating this important need, the members of CODE have developed an Information Access and Publication Policy.

Treatment centres that join the Oncology Data Network (ODN) will get access to up-to-date information at no cost, enabling them to compare their own site-level data with aggregated, non-identifiable information at a regional or country level across the ODN.

In addition, a wide range of other organisations will be able to request access to information based on non-identifiable aggregated data at a regional or country level which will ensure that data privacy of patient, treatment centre and clinicians are maintained. This information will provide valuable snapshots of the use of anti-cancer medicines. Standardised reports will be made available via a secure analytical portal. In addition, organisations will be able to apply for customised analyses.

This Policy is expected to apply to interested groups such as clinicians who are not yet part of the ODN, patient organisations, academic research organisations, scientific societies and professional bodies, national or European non-academic, non-governmental organisations and national and European Governmental agencies concerned with cancer care or cancer policy.

CODE’s Clinical and Analytical Steering Committee consisting of leading clinicians from across Europe will oversee the review of all applications to ensure clear and transparent governance.

It is envisaged that these resources will be available in 2019 once the Oncology Data Network has grown to a sufficient scale to enable meaningful analyses to be generated.

To learn more please contact us.

CODE officially launched at ESMO, event report published

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On Sunday September 10th 2017, the Collaboration for Oncology Data in Europe was formally launched at the European Society for Medical Oncology Congress in a private event chaired by David Kerr, Professor of Cancer Medicine at University of Oxford.

Our keynote speaker Robert Madelin, Chairman of FIPRA and former European Commission’s Director General for Health & Consumer Policy and Communication Networks, Content & Technology, explored the linkages of data, health and innovation. He shared how, in this view, data underpins the EU health debates we need and posed the question of building trust for innovative care with a collaborative approach.

Dr Ashley Woolmore who is leading the CODE initiative then set out our vision for this project which was described by one participant as “perhaps the highlight of the ESMO meeting. I really did feel that we could change public health in a fundamental manner…”

In the panel session that followed, we were joined by Winald Gerritsen, Professor of Tumour Immunotherapy at Raboud University and Richard Bergstrom, Head of Pharma, SICPA and former Director General of EFPIA. There was great interest from the audience, particularly around how an initiative such as CODE could contribute to improving patient care.

Please click here for a full report of the event.

CODE: Informing patient care, enabling the independent development of flexible payment agreements, realising financial sustainability goals

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There are three million new cases of cancer in Europe every year [1] . As a society, we know we need more effective anti-cancer medicines, with fewer side-effects, to offer better outcomes for those living with cancer.

Biopharmaceutical companies are committed to finding ways to fulfil that need and have invested heavily in the research and development of innovative therapies. As a result of that commitment, the number of effective anti-cancer medicines available for patients is growing substantially.

This success also heralds a shift in the way anti-cancer medicines are used. As people live with cancer for longer, there is a rise in the number of patients receiving sequential anti-cancer medicines, including combination therapies, increasingly tailored to meet the specific profile of an individual patient.

As Biopharmaceutical Members of the Collaboration for Oncology Data in Europe (CODE) [2] ,we believe that not enough is known today about how anti-cancer medicines are actually used in real-world clinical practice. Up to date, reliable information is vital. It not only informs patient care, but may also facilitate the independent development of more flexible payment agreements between payers and Biopharmaceutial companies that help address the challenge of financial sustainability. Such agreements may also better reflect the value of anti-cancer medicines in terms of their clinical benefit to patients, thereby helping to mitigate payers’ and providers’ financial risks.

Driven by these imperatives, CODE is supporting the creation of the Oncology Data Network (ODN). The ODN has been designed to collate anti-cancer medicine usage data for all types of cancer, all patients, and all treatment centres in Europe that wish to join. We believe this initiative is a source of valuable information to the oncology community in treating patients, and could provide an important contribution to our independent development of new kinds of flexible agreements based on real world usage of innovative anti-cancer medicines.

Our membership of CODE is a demonstration of our commitment to working with key stakeholders in healthcare systems to encourage the provision of timely information that can inform patient care and proactively address the issue of financial sustainability confronting the oncology community. As the Biopharmaceutical members of CODE, acting independently of one another, we each intend to propose new flexible payment models to help address the financial considerations associated with the use of anti-cancer medicines.

We all share an enduring commitment to research and innovation with the goal of making a significant contribution to the lives of people living with cancer. Together, through our support for the ODN, we are taking a proactive step towards ensuring the long-term financial sustainability of innovative anti-cancer medicines, whilst also providing healthcare systems across Europe with information that informs patient care.

[1] World Health Organization (WHO) Europe Region, Cancer, data and statistics (http://www.euro.who.int/en/health-topics/noncommunicable-diseases/cancer/data-and-statistics)

[1] The Biopharmaceutical Members of CODE are: AstraZeneca, Bristol-Myers Squibb, Eli Lilly & Co, Merck and Pfizer

We are attending ESMO 2017 Congress, 8-12 September, Madrid, Spain

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Visit our Collaboration for Oncology Data in Europe (CODE) Booth (#216) to see how we are focused on collating comprehensive, near real-time data on how anti-cancer medicines are actually used, for which patients, and in which combinations and sequences, across Europe.

You can also learn about how CODE is supporting the building of the large-scale Oncology Data Network, a platform that is enabling the aggregation of data on anti-cancer medicine usage for all forms of cancer, in all patients and for all treatment centres across Europe who wish to join. The data collated will enable the oncology community to derive greater value from anti-cancer medicines for patient benefit.

If you would like to arrange a meeting with one of our team or are interested in joining the Oncology Data Network please contact Natalie at nreeves@uk.imshealth.com.