Philip Poortmans, Co-Chair of the Quality Cancer Care Network, opened the session, subtitled From good intentions to patients’ benefit.
He said that it is obvious what is required to implement quality cancer care in Europe, but the issue is how to make it available for the benefit of all patients. To those ends, the Network has developed, with members and patient advocacy groups, a series of Essential Requirements of Quality Cancer Care. They are also developing Essential Requirements for Pancreatic Cancer, Ovarian Cancer and Glioma, while that for Lung Cancer was published in late November.
Simon Oberst, Co-Chair of the Quality Cancer Care Network, also pointed delegates to the new European Quality Cancer Care Catalogue, which amplifies the work of Network participants, including European Cancer Organisation’s Member Societies, to improve patient care. However, he underlined the focus of the session was to move from nice ideas to real implementation.
Row 1 - Thierry Philip (EU Cancer Mission Assembly; OECI); Simon Oberst (European Cancer Organisation’s Quality Cancer Care Network); Sema Erdem (European Cancer Organisation’s Patient Advisory Committee). Row 2 - Peter Lührs (Bayer); Francesca Colombo (Organisation for Economic Co-operation and Development); Philip Poortmans (European Cancer Organisation’s Quality Cancer Care Network).
Sema Erdem, Co-Chair of the European Cancer Organisation’s Patient Advisory Committee, said a recent survey by Europa Donna showed that progress has been made in breast cancer services over the past ten years, with more countries having cancer plans, registries and specialist services. The result is many more women are receiving breast cancer screening and the vast majority are treated in a reasonable timeframe.
However, there remain a number of challenges, as many countries do not have a breast cancer plan, registry or parliamentary group. Even if screening is available, the guidelines are not always followed and specialised services are often available only in large cities. All of these issues need to be tackled at a European level if improvements are to be made.
Thierry Philip, EU Cancer Mission Assembly member and President of OECI, said that the infrastructure required to implement comprehensive cancer care already partially exists. The OECI has accredited 40 CCCs and large clinical centres in seventeen European countries in Europe, which together have treated more than a million patients since accreditation. Of the remaining ten countries, two are developing at least one CCC.
However, achieving the goal of comprehensive cancer care requires that it moves from an organ-centric approach towards precision medicine based on tumour genomics and immunology. Moreover, interdisciplinarity is the only way to link fundamental and clinical research, and achieve better patient outcomes.
Philip noted that Recommendation 10 of the EU Cancer Mission stipulates the setting up a network of Comprehensive Cancer Infrastructures (CCIs) to increase the quality of research and care. These can be based on standalone CCCs or within university hospitals, but he pointed out that CCCs will not be able to see all patients,
which means also setting up local networks, guidelines, infrastructure and access to clinical trials.
Achieving this will require collaboration between expert organisations and EU Member States to decide on what a CCI should look like in their country and then map it down to a given locality. A fund should also be established for hospitals and cancer centres/networks to bid for consultancy services so they can form themselves into a CCC/ CCI within a local framework.
All accreditation programmes for CCCs should follow a set of principles, including that it is voluntary, regarded as best practice, and be a bottom-up process in which centres request and pay for it. Accreditation should also be transparent, enable benchmarking and be seen by patients as improving outcomes.
Kathy Oliver, Vice Chair of the European Cancer Organisation’s Patient Advisory Committee, commented that CCCs should also offer patients written, detailed survivorship plans, as well as referrals to the relevant cancer patient advocacy organisation for additional information and support, which is included in right 9 of the European Code of Cancer Practice.
Peter Lührs, Therapeutic Area Head Oncology, Bayer, said he welcomes and supports the goal of a network of CCCs, and agrees with the idea of moving away from organ-centric cancer care.
When bringing novel treatments to patients, any standardisation, whether via algorithms or guidelines, will level up outcomes, and a coordinated Europe-wide approach may iron out national and subnational fragmentation. He also
emphasised that the barriers to high-quality care for patients are the same barriers that get in the way of developing innovations.
Asked what data would be useful, Lührs said there is a lack of widespread and consistent genetic profiling of tumours, while clinical trials designed for regulatory purposes often do not reflect the real world. A better and more consistent way of examining treatment durations and sequencing is needed, which would help in developing new indications and treatments. Moreover, the rules around data privacy are fragmented. Anything that irons out these issues would help the development of more relevant trials.
Francesca Colombo, Head of the Organisation for Economic Co-operation and Development (OECD) Health Division, took up the theme of data and results driving efficacy in cancer care, underlining the key issue is to measure the right things, using international standards, and collating the data to make informed choices.
While there has been progress in data collection on cancer risk factors, screening, hospital stays and discharges, and survival rates, there are many areas, such as patient-reported outcomes (PROs), that are lagging behind. There is also a lack of cancer registries in some countries or incomplete coverage of the population, and missing information on, for example, cancer stage.
Colombo said that granular data and cancer dashboards that bring together multiple datasets would offer further insights into cancer care services, but the individual datasets need to improve, and it is important to be able to disaggregate the information to make more sophisticated analyses. Bridging data gaps will require stronger stakeholder involvement, in addition to which there are a number of important data privacy issues to be addressed.
In the panel discussion, Colombo said, while cancer dashboards are welcome, the devil is in the detail, especially around comparability. There needs to be a way of assessing access and the quality of support for patients, alongside care, each with their own indicator.
While there remains a long way to go, cancer dashboards are a good way of pushing quality care up the healthcare agenda, she said, as they get a reaction and start the conversation. However, the limitations around what can be inferred need to be clearly understood.
Lührs added there is a lot of data available from clinical trials but they have a narrow focus and do not necessarily answer the questions raised by Colombo. However, it could be valuable to take one cancer in particular and see what can be achieved by aggregating all the available data to the point where it can offer insights.
He then asked Colombo whether PROs are sufficiently included in health technology assessments (HTAs) when considering the effectiveness of novel treatments. Her belief is they are to a certain extent but they are far from being standardised. Current PROs were developed based on clinical impetus but in very different ways, she said. Consequently, using them beyond the particular context in which they were designed is difficult. More work is therefore needed, and the OECD is trying to accelerate the process of using and standardising PROs.