The Belgian Oncology Nurses Association (SIO) announce collaboration with the Collaboration for Oncology Data in Europe (CODE)

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To read this post in French, please see below the English post.

The Belgian Oncology Nurses Association (Société des Infirmières en Oncologie, SIO) has today announced a collaboration with the Collaboration for Oncology Data in Europe (CODE).

“Oncology Nurses play a critical role in patient care. As key members of multi-disciplinary teams, we are often on the front line of both capturing but also using information on cancer treatment to help us optimise the care and support we provide to patients.  We are therefore delighted to be partnering with CODE. We support their goal of creating a network of centres around Europe that enable the sharing of information on how anti-cancer medicines are actually being used in clinical practice. We are looking forward to working with CODE to help realise this vision,” said Patrick Crombez, President of SIO, Head Nurse of the Haematology Department and responsible for research and nursing development at the Institut Jules Bordet and Board Member of the European Oncology Nursing Society (EONS) as well as Ayhan Findink, Head of External Relations at the SIO and Maitre-assistant the Institut Parnasse-ISEI and member of the CODE Country Advisory Group which provides country level governance for the CODE initiative.

“The creation of the Oncology Data Network is an ambitious and challenging initiative,” added Myriam Guiral, CODE’s Country Lead in Belgium.  “To succeed with both creating the network and realising its full value to help inform patient care and address the challenges of financial sustainability, it is critical to work with key stakeholders from across the cancer community.  The collaboration with SIO offers an exciting platform on which we are looking forward to building by bringing together players from patient organisations, professional bodies and policy makers and influencers.

The collaboration will be launched officially at an event in Brussels on 4 December 2018. For more information on the project, please contact Ayhan Findik at or Myriam Guiral at

Collaboration avec CODE

La Société des infirmières en oncologie (SIO) a annoncé aujourd’hui une collaboration avec CODE :

« Les infirmières en oncologie jouent un rôle essentiel dans les soins aux patients. En tant que membres clés des équipes multidisciplinaires, nous sommes souvent en première ligne pour la saisie mais aussi pour l’utilisation d’informations sur le traitement du cancer afin de nous aider à optimiser les soins et le soutien que nous fournissons aux patients. Nous sommes donc ravis de nous associer à CODE. Nous soutenons leur objectif de créer un réseau de centres en Europe permettant le partage d’informations sur la manière dont les médicaments anticancéreux sont réellement utilisés dans la pratique clinique. Nous sommes impatients de travailler avec CODE pour concrétiser cette vision « , ont déclaré Patrick Crombez, président de la SIO et infirmier en chef du département d’hématologie et chargé de la recherche & du développement infirmier à l’Institut Jules Bordet et membre du conseil de l’EONS (European Oncology Nursing Society) ainsi que Mr Ayhan Findik, membre de la Gouvernance locale pour ODN en Belgique et responsable des relations extérieures à la SIO et Maitre-assistant à l’institut Parnasse-ISEI.

« La création du réseau de données en oncologie est une initiative ambitieuse et nécessaire « , a ajouté Myriam Guiral, responsable de CODE et la mise en place du Réseau de données en Oncologie (ODN) : en Belgique et aux Pays Bas. « Pour réussir à la fois à créer le réseau et à en tirer pleinement parti pour aider à informer les patients et à relever les défis de la viabilité financière, il est essentiel de travailler avec les principales parties prenantes de la communauté du cancer. La collaboration avec la SIO offre une plate-forme passionnante sur laquelle nous sommes impatients de construire en réunissant des acteurs issus d’organisations de patients, d’organismes professionnels, de décideurs et d’influenceurs.

La collaboration débutera officiellement lors d’un événement de lancement prévu à Bruxelles le 4 décembre 2018.

Pour plus d’informations sur le projet, veuillez contacter Monsieur Ayhan Findik à et Myriam Guiral à

Building the roadmap to outcomes-based cancer care

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The European CanCer Organization and the Collaboration for Oncology Data in Europe announce a pragmatic approach to understand, evaluate, and improve clinical care in Oncology

LOCATION Vienna, Austria, DATE 7 September 2018 – Today the European CanCer Organization (ECCO) and the Collaboration for Oncology Data in Europe (CODE) announced the results of a research project which identifies a standard set of eight “pragmatic outcome measures” in cancer care that have value to both clinical teams and patients. These outcomes measures were derived from real-world data collected as part of routine care, and validated by leading clinicians and patient advocates. Their findings represent a valuable step in Europe’s move toward outcomes-based care in cancer.

The jointly published report, Understanding Pragmatic Outcome Measures in Oncology, reflects 25 interviews with stakeholders from the European oncology community including: patient representatives, clinicians and individuals from various oncologic professional bodies. The results of this project will be discussed at the ECCO 2018 Summit, the 7 to 9 September 2018, and at a roundtable in Brussels on 6 November 2018.

A key driver of the research was to build a better understanding of how health systems can move towards more outcome-based cancer care. With a focus on “pragmatic outcome measures,” the research evaluated opinions from healthcare professionals and patients regarding the value of widely available outcome measures, as well as measures which are more complex to assess. The ultimate objective of the report was to chart a path toward comprehensive outcome measurement through achievable stages.

Key findings from the research include:

  • Consensus exists on the value that widely available, systematic outcomes measurement can provide to all involved in cancer care
  • Alignment on the value to patients and clinicians of an initial set of “pragmatic outcomes measures” which can be collected relatively easily and at scale in near real time as a first step towards a part of a broader programme toward comprehensive outcome management for cancer care
  • Exploring and reconciling metrics that are currently perceived as having different value to patients and clinicians, respectively
  • The need to address practical hurdles, including capturing data in a structured and standardized manner given technology and resource limitations, and a lack of guidelines. Removing such obstacles are necessary steps toward developing an integrated approach that incorporates patient reported data into routine clinical practice
  • A call to come together at the European level to ensure that efforts to capture outcomes measures are properly resourced and prioritised
  • A call to develop and embed outcomes measurement into European-level ”essential requirements”[1]


Commenting on the findings,

ECCO President Professor Philip Poortmans said: “Outcome measurement is seen by many within the oncology community as an exciting opportunity to have a more patient-centric approach to care, and to allow healthcare providers to make informed decisions based on patient current needs and historical research. However, we need to now move the discussion beyond simple expression of aspiration and into the practicalities of execution. The results of this research provide excellent insights for decision makers about the next steps in the journey towards comprehensive outcome measurement” 

Professor David Kerr, Head of Oncology at the University of Oxford and Chair of CODE’s Clinical and Analytical Steering Committee added: “This research provides clarity about immediate opportunities to enable the European cancer community to improve understanding of the value of treatment interventions. Harnessing the insights that are available to us today, will enable us to better inform decisions and contribute to the advancement of cancer care. Pragmatic outcomes measures are an actionable immediate first step towards widespread collection and use of comprehensive outcomes measurement in the European oncology community. The recommendations in this report also set out a clear roadmap where increased focus and investment in the near term will allow us to gain further insight and work together towards a comprehensive, longer-term approach. ”




  1. The European CanCer Organisation (ECCO) is a not-for-profit federation that exists to uphold the right of all European cancer patients to the best possible treatment and care, promoting interaction between all organisations involved in cancer at European level. Through its 23 Member Societies – representing over 150 000 professionals – ECCO is the only multidisciplinary organisation that connects and responds to all stakeholders in oncology Europe-wide. It does this by creating awareness of patients’ needs and wishes, encouraging progressive thinking in cancer policy, training and education and promoting European cancer research, prevention, diagnosis, treatment and quality care through the organisation of international multidisciplinary meetings. Further information here:
  2. The ECCO 2018 European Cancer Summit, will be held on 7-9 September 2018 in Vienna, Austria bringing worldwide leaders from the cancer healthcare, patient advocacy and stakeholder communities together in a unique multidisciplinary forum. Outcomes Research is one of the three topic pillars of the event. Further information here.
  3. The ECCO-CODE research project was jointly developed through open conversations and dialogue with oversight by both parties’ advisory boards: the ECCO OncoPolicy Committee Executive and the CODE Clinical and Analytical Steering Committee (CASC), whereby areas of mutual research interest were identified, and was supported via grant funding from IQVIA World Publications Limited to ECCO.
  4. The Collaboration for Oncology Data in Europe (CODE) is an initiative supporting the creation of the Oncology Data Network (ODN) that will provide reliable, up-to-date information on how anti-cancer medicines are actually itself used in clinical practice and enable flexible payment models. The ODN is a collaborative data sharing network open to any cancer treatment centres across Europe that wishes to join, to share non-identified information on how treatment centre-administered anti-cancer medicines are used in clinical practice.
  5. CODE is led by IQVIA and has been established with support from leading biopharmaceutical companies as the Biopharmaceutical Members, who joined CODE as part of their commitment to providing patients with access to innovative medicines, in a way that is financially sustainable for the payers, biopharmaceutical research and development and oncology community. The Biopharmaceutical Members are Bristol-Myers Squibb, Eli Lilly and Company, Merck, Pfizer, AstraZeneca and Amgen. To learn more, visit: 
  6. ECCO essential requirements for quality cancer care (ERQCC) are checklists and explanations of organisation and actions that are necessary to give high-quality care to patients who have a specific tumour type. They are written by European experts representing all disciplines involved in cancer care. More information here:
  7. For more information on this research project, or on the upcoming policy roundtable in November, please contact Richard Price, EU Policy Affairs Manager, ECCO, at or Julia Levy, External Engagement Lead, CODE at


The Collaboration for Oncology Data in Europe (CODE) sponsors the International Forum for Quality Cancer Care (IFQCC) from 8-9 September, Oxford, UK

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CODE is sponsoring the International Forum for Quality Cancer Care (IFQCC) whose vision is to become a world-leading forum in addressing cancer care delivery issues leading to a positive impact on the global efforts for cancer control.

CODE is supporting the creation of the Oncology Data Network (ODN) which has been designed to collate up-to-date information on how anti-cancer medicines are actually being used in clinical practice across Europe. This information can be used to help both inform patient care and address the challenges of financial sustainability.

The Forum will be led by Professor David Kerr Professor of Cancer Medicine at the University of Oxford and Chair of the CODE Clinical and Analytical Steering Committee.

Professor Kerr commented: “We welcome the sponsorship and support from the Collaboration for Oncology Data in Europe (CODE) for the International Forum for Quality Cancer Care (IFQCC) from 8-9 September. There will be key players at the conference from Europe and beyond, who will be eager to learn of the aims and aspirations of CODE, the ODN and how anti-cancer medicines are actually being used in clinical practice across Europe.”

“We are pleased to support this Forum which is addressing issues aligned with our own goals at CODE.  It is exciting to see hospitals across Europe joining the Oncology Data Network. They are recognising the need to come together to find new solutions to the challenges of informing quality care and addressing financial sustainability whilst ensuring data protection and patient and physician privacy.” added Dr Ashley Woolmore, CODE Initiative Lead.

Attendees will include oncologists, policy makers, nurses and pharmacists, with the aim to understand health systems and key reforms in cancer policy, sharing experience of existing initiatives to improve quality of cancer care and considering the role of the healthcare industry in responding to the challenge of cancer.

The Forum is taking place at Keble College in Oxford from 8-9 September 2018 and is organised by the Cancer Care Commission. For more information, please visit:

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

New research paper “Economics of Innovative Payment Models Compared to Single Pricing of Pharmaceuticals” by OHE and Prof Richard Sullivan (King’s College London)

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The Office of Health Economics (OHE) and Professor Richard Sullivan from King’s College London have published a new research paper on the “Economics of Innovative Payment Models Compared to Single Pricing of Pharmaceuticals.”   This research was supported by an unrestricted educational grant from IQVIA.

The paper explores and critiques existing academic research on the benefits and challenges of setting different value-based prices for the same medicine.  It also presents an economic analysis of the introduction of a multi-price model.  The authors go beyond the assessment of a single product to explore the impact of competition, including the longer-term impact on patient access, R&D incentives and the implications of increased competition at the indication level.  The paper concludes that the longer-term effects of indication based pricing offer optimised incentives for R&D and the potential for increased price competition at the indication-level, ultimately delivering better value to the health system.

Dr Ashley Woolmore, CODE Lead and Senior Vice President IQVIA (formerly QuintilesIMS) said, “This is a thought provoking piece of research that analyses the potential economic benefits of adopting innovative payment models.  One of the key objectives of the CODE initiative is to help enable such agreements.  We welcome this robust research as an important contribution to the ongoing policy debate.  We look forward to playing our part in facilitating the implementation of these new payment models, which are designed to help the healthcare system address the challenges of financial sustainability of cancer treatment.”

Please visit the OHE website to read the report.



CODE France Launch Event at the 13th Biennale Monégasque de Cancérologie in Monaco, Report Published in French and English

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The Collaboration for Oncology Data in Europe (CODE) and the Oncology Data Network (ODN), was officially launched in France on the 1st February 2018. The CODE launch event took place during the biennial cancer congress in Monaco. The congress attracts more than 1,300 professionals working in oncology including representatives from hospitals, cancer care centres, clinics and UNICANCER.

Keynote speaker, Professor Xavier Pivot, Director General of the Paul Strauss Centre in Strasbourg and Administrator of the Alsace Regional Cancer Institute, shared his vision on the clinical impact of data analysis.

The launch event was chaired by Professor Blay, a member of CODE’s international Clinical and Analytical Steering Committee (CASC). He was joined by Prof Gilles Calais, oncologist and radiotherapist at the Academic Hospital of Tours, Prof Samuel Limat, Professor of Clinical and Therapeutic Pharmacy and Dr Ashley Woolmore, Lead for the CODE initiative.

During the event there was a panel discussion on how the use of real-world data can transform patient care and help address the challenges of financial sustainability.

“The CODE initiative is of strategic importance and has the particular benefit of not just providing insights in France but also enabling us to compare ourselves with other countries, and this will be an important point in the years to come,” said Prof Blay.


Please click here for a full report of the event in French

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


For more information about joining the Oncology Data Network in France, please contact CODE Country Lead, Claire Lamotte at

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.