Cracking the CODE: collecting data to inform treatment and support access to treatment


Ashley Woolmore, Initiative Lead for CODE, QuintilesIMS

Real-world data have the potential to unlock new insights into the treatment of cancer, but realising this potential requires smart new approaches. Ashley Woolmore discusses the need for, and the promise of, a new oncology data network designed to shine a light on uses of different treatments and bring value and benefit to patients.

Significant advances in cancer research have led to an ever more dynamic and complex treatment landscape. The opportunity to personalize cancer care, brought about by increased genetic knowledge of cancers, has enabled the development of molecules that target a range of cancers.  

In 2014, more than 50 per cent of major cancer medicines marketed were for multiple indications. By 2020, the share of molecules receiving multiple indications is estimated to rise to 75 per cent.1 In addition to this, substantial development of understanding of the pathophysiology of cancer is introducing a new era where existing and new cancer medicines will be used in different combinations.

Clinical practice adapts to innovation at different speeds, with variations emerging in the treatments that are offered by different clinicians. The rapid increase in new options also presents health systems with sometimes difficult financial questions as they seek to ensure appropriate patient access to treatment. 

Despite this increasing complexity, surprisingly little is known about how different drugs are being used in real world clinical practice today. In most countries the data infrastructure has not been in place, or at least not in a way that can inform treatment pathways or power novel models of access to innovative treatments.

More robust data on therapy usage would enable clinicians to compare their own decisions with those of their peers in clinically similar populations. Third parties may also be able to constructively review the analyses to support clinicians make informed pathway decisions. Agreements with payers that more accurately and fairly recognize the differences in value that individual treatments can bring in different patient populations and at different times in their treatment would also be a possibility. Tailoring different payments to different situations could offer a chance to support better patient access to innovative treatments.

The Oncology Data Network (ODN), supported by the Collaboration for Oncology Data in Europe (CODE), initiated by QuintilesIMS and supported by a number of leading pharmaceutical companies, including AstraZeneca, is an important step towards meeting this need.  

The ODN will facilitate 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. For the first time, centres who join the network will be able to explore near real-time, clinically robust, real-world information on how anti-cancer medicines are being used, for which patient groups, and in which combinations and sequences, across Europe. Industry members and healthcare systems will be able to use aggregated treatment data to inform novel approaches that could support patient access to treatment.

Aggregation of data within the ODN will meet exacting standards of privacy and data protection, information governance and security with patient, physician and centre privacy protected through a rigorous de-identification process. Pharmaceutical companies involved will only ever have access to de-identified, aggregated information.  

Alongside the building of the data infrastructure is significant engagement across the oncology community, involving leading cancer experts and broader groups of stakeholders on how to build and use the Oncology Data Network. Such engagement can be seen clearly at this ESMO 2017 congress, and will continue well beyond the meeting.

Discovery of new treatments for cancer comes from previously unimaginable levels of scientific sophistication and collaboration in labs around the world. To ensure this progress translates into clinical benefit for patients, many stakeholders need to be involved in translating this science into improved outcomes for more cancer patients. Tracking the way that treatments are used in the real-world clinical setting is an important foundation stone upon which we can all build together.

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Ashley Woolmore is the Initiative Lead for CODE at QuintilesIMS. His main interest is facilitating the generation of insight from real-world data sources to drive change in healthcare delivery and policy. He is particularly focused on cancer and its treatment, and innovative approaches to data integration and analysis. Ashley also has substantial experience of partnership and collaborative working models



1. Jorge Mestre-Ferrandi et al. Multi-indication Pricing: Pros, Cons and Applicability to the UK. Seminar Briefing Paper, October 2015, 


Veeva ID: Z4-6946
Date of next review: September 2018