CODE to be formally launched in the UK at the Oncology Forum 2018 in Liverpool

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The Collaboration for Oncology Data in Europe (CODE) is being formally launched in the UK at the Oncology Forum in Liverpool from 14th to 15th June 2018.

The CODE team will be exhibiting at the event, attending the conference dinner and engaging with a number of groups through a range of short presentations at the Forum’s fringe meetings. We are excited to be sponsoring such an important event in the UK Oncology landscape.

If you would like to meet with the CODE team during the event, please get in touch with us by emailing

The European CanCer Organisation partners with the Collaboration for Oncology Data in Europe to explore pragmatic outcomes measurement

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The European CanCer Organisation (ECCO) and the Collaboration for Oncology Data in Europe (CODE) are embarking on a joint initiative to explore outcomes measurement within cancer care. The goal is to further explore the topic of outcomes measurement to identify metrics of high clinical value, meaningful for both patients and clinicians, but which can be measured efficiently and be put “at the right scale”. This work will be part of the longer journey towards comprehensive outcomes measurement. “ECCO’s mission is to improve outcomes for cancer patients through the delivery of higher quality cancer care. This partnership allows us to contribute to the debate on how to move towards delivering greater value to patients and healthcare systems. We are therefore delighted to be working with CODE to better understand which outcomes can be measured accurately today, to explore their value and the associated cost of capturing this data, and to contribute towards the journey to comprehensive outcomes measurement” said Prof Philip Poortmans, ECCO’s President.

“Innovations in the treatment of cancer are offering increased options and choices for clinicians and patients,” added David Kerr, Professor of Cancer Medicine at the University of Oxford and Chair of CODE’s Clinical and Analytical Steering Committee. “Valuable work has already been done to define comprehensive outcomes approaches for a number of cancer types by organisations such as ICHOM. However, the systematic evaluation of outcomes that can be generated from the day-to-day clinical setting, particularly outcomes that matter to patients, is still at an early stage due to the complexity of cancer and cancer care. We look forward to working with ECCO on this important project.”

The research project will explore the value of different outcome metrics, while assessing the clinical insight that can be derived and the feasibility, complexity and challenges associated with sourcing the required information. It also aims to help inform the understanding of the drivers and challenges of information gathering for outcomes based health systems and recognise what can be achieved with existing real-world datasets.

ECCO and CODE will be capturing insights from interviews with a wide range of stakeholders from various organisations within the European oncology community to ensure that a wide range of views is included in the project. The interviews will be analysed and contribute to a report developed by ECCO and CODE. This will then offer an opportunity for broader engagement and discussion of the research findings, along with additional perspectives on pragmatic outcomes measurement, at the ECCO 2018 European Cancer Summit from 7-9 September 2018.

For more information on the project, please contact Richard Price, EU Policy Affairs Manager, ECCO, at or Julia Levy, External Engagement Lead, CODE at .

Supporting the journey to value-based healthcare: Winner announced for the VBHC Prize 2018

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Following CODE’s sponsorship of the Value-Based Healthcare Prize 2018, members of the CODE team attended the awards ceremony in Nijkerk in the Netherlands on Thursday 26 April 2018. It was an honour to see Harvard University Professor Michael Porter, PHD, present the VBHC Award to The Netherlands Heart Network – huge congratulations on your win!

The CODE team would also like to congratulate Maxima Medical Centre, Cancer Treatment Centre in the Netherlands, who won the ‘Cost-effectiveness’ award.

Many congratulations to all the other winners on the day – it was great to celebrate all of the amazing work in the area of VBHC.

CODE sponsors the Value Based Healthcare Prize 2018, blog published

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CODE is delighted to sponsor the Value Based Healthcare Prize (VBHC) 2018. The VBHC Prize rewards and recognises initiatives that have adopted a new line of thinking in creating excellent patient value in terms of outcomes and costs. The prize will be awarded at a ceremony in Amsterdam on 26th April 2018.

As part of our support, we contributed the following blog post which was published on the VBHC Prize website and in the event booklet.

A step on the journey to value based care in cancer

A key pre-requisite to a value based approach to healthcare is the availability of relevant information to inform decision making and determine the value that is being realised.

In cancer care, this has become more complex with the substantial growth in the number of new anti-cancer medicines, often for multiple indications and different combinations, sequences and other variations. These innovations offer significant potential to improve treatment for cancer patients, but they create challenges for clinicians to navigate this complexity. At the same time, ensuring access to these new innovations can also generate challenges of financial sustainability for healthcare systems.

Sharing real-world insights in oncology

To address these challenges, up-to-date information on the use of anti-cancer drugs in clinical practice is vital. This is the impetus behind the establishment of the Collaboration for Oncology Data in Europe (CODE), led by IQVIA with support from leading biopharmaceutical companies. CODE is supporting the creation of the Oncology Data Network (ODN), which aims to provide timely information back to the healthcare system about anti-cancer medicines use for all patients who are actually being treated, from all treatment centres who choose to join.
The ODN is a network of cancer treatment centres that will share non-identified information on how anti-cancer medicines are used in their clinical practice with the Network. Treatment centres who wish to join the ODN will be provided with the analytical tools to explore how they treat their patients and compare this against multi-centre aggregated information from across the Network. This information could be used to consider ways to help inform patient care and identify variation in their use of anti-cancer medicines across Europe.

Informing decision making and enabling better value care in cancer

The information derived from the ODN can also provide an important contribution to the development of new kinds of flexible payment agreements based on real-world usage of anti-cancer medicines. The information on medication use is intended to support agreements that better align payment to the clinical benefit of these medicines.

The creation of the network is a step towards gaining insights into a value-based approach in the use of innovative anti-cancer medicines, whilst providing healthcare systems across Europe with up-to-date information to help inform patient care.

To learn more about the Collaboration for Oncology Data in Europe, visit For further enquiries, email us at

CODE and the ODN published in El Mundo 9 April 2018

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An article on CODE and the ODN titled “Big Data el uso de los datos para transformar la lucha contra el cáncer” (“Big Data – Harnessing data to transform cancer care”) was published in El Mundo, one of Spain’s leading newspapers on 9 April 2018.

“Nearly a quarter of a million people are diagnosed with cancer every year in Spain, according to the Spanish Society of Medical Oncology (SEOM). But what does the future hold in reducing mortality rates? Can “big data” offer a solution?”

Please click here to read the full article.
CODE has translated this article to English, to read the English version, please click here.

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

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.”