OECI is leading workpackage 5 (WP5) of the
EU Joint Action on Rare Cancers (JARC) on Quality Assurance. One of the central pillars of the JARC is the
support for the three cancer European Reference Networks (ERNs), EURACAN for
adult solid cancers, Eurobloodnet for rare haematological malignancies, and
PaedCan for childhood cancers. A related objective is to spur the creation or
consolidation by Member States of new national networks of centres diagnosing
and treating rare cancers. WP5 is an
essential workpackage to assure the quality of the diagnosis and holistic care
of rare cancer patients. It is
complementary to the work of WP6 on the use of highquality Clinical Guidelines.
This work builds on OECI’s 11 years
experience in cancer quality systems in Europe. Most of OECI’s assessment and
evaluation work to date has been based on cancer centres. Networks pose significantly different challenges,
and the quality standards which WP5 has crafted are a mix of standards which
relate to the treatment and care given in individual centres, and quality
standards which relate to the way the network connects together, and should
offer a seamless continuity of care along the patient pathway.
JARC is now in its third and final year of work. In the first year of WP5 we reviewed all the
existing forms of quality standards for networks globally in operation. The last year has been a process of honing
the proposed standards down to those which are objective and essential measures
of quality, ambitious but realistic.
On 26-27 March the WP5 and all associated
parties met in the lovely Sicilian town of Catania for a consensus meeting on
the Quality Standards and Indicators, hosted by the Insituto Oncologico del Mediterraneo.
We held rounds of intensive interactive sessions looking in detail at the
proposed Quality Standards and Indicators.
One set of these is intended for recommendation and feeding into the
proposed ERN system to be called AMEQUIS – Assessment, Monitoring, Evaluation
and Quality Improvement System. The
second set of Standards and Indicators is intended for recommendation to
national policy-makers for use by emergent or future rare cancer networks. This second set would no doubt be adapted for
national circumstances, although the standards have been crafted to be
applicable to a wide variety of health systems and forms of network.
In the Catania session we were very pleased to rationalise the sets
of standards, and reduce their number to 36 for the Cancer ERNs and 51 for
National Networks. They follow the
headings of the ERN Operational Criteria, being:
- Highly Specialised Healthcare
- Governance and Co-ordination
- Patient centredness and care
- Multi-disciplinary approach
- Good practice, outcome measures and quality control
- Education, training and development
- Networking and collaboration
- Infrastructure and Data
indicators, the consensus group has honed the list down to 19 indicators of
Structure, Process and Outcome (according to the Donabedian Model) and 4 extra
cancer-specific indicators for the ERNs to add to the 18 indicators already
agreed by the ERN monitoring group. The
Catania meeting was pleased to involve Michell Battye from that ERN monitoring group
to enable us to make the key recommendations.
All these proposals will now be taken forward to the final
recommendations of the JARC.