Developing core principles for routine patient reported outcome measures (PROMs) collection in cancer care in Scotland

Although positioned within the Scottish Cancer Strategy, PROMs are not collected routinely in Scotland. The, Scottish Government (SG) funded Cancer Medicines Outcomes Programme (CMOP) supported the establishment of the Scottish Cancer PROMs Advisory Group (SC PROMs AG) to provide a strategic approach to cancer PROMs. Action 126 in the Scottish Government’s Cancer Action Plan is to develop a set of Core Principles for integrating PROMs into care and digital systems. Their development is detailed in this abstract.

Eight Core Principles were initially developed by the SC PROMS AG, and three were presented for consideration at the SC PROMs Forum event. N=71 participants contributed, mostly representing healthcare, academia, third sector, digital companies, patients/public and government. Learning from the session helped to adapt the Principles. The final Core Principles were endorsed by Scottish Government’s Cancer Strategic Board.

PROMs are not currently collected on a routine basis in Scotland. These Core Principles aim to provide structure and consistency in the way PROMs are collected in Scotland in the future, to make care valuable and sustainable.

Capturing PROMs in routine cancer care can help monitor treatment impact on quality of life, improve discussion with patients, inform treatment decisions, and transform care pathways which impacts on the value and sustainability of cancer care. Action 126 in the Scottish Government’s Cancer Action Plan is to develop a set of Core Principles for integrating PROMs into care pathways and digital systems.

Ten Core Principles were developed, in areas of:
1.Evaluation
2.Planning and resource allocation
3.Governance framework development
4.Stakeholder engagement and cooperation
5.Having clearly defined outcome measures
6.Using valid and consistent PROMs tools/items
7.Taking an integrated approach to PROMs
8.PROMs to be completed by patients/carers
9.Analysing, interpreting, reporting and disseminating PROMs data
10.Accessibility / inclusivity.

Other learning from the Forum included a need for; standardisation as well as person-centredness; clear and relevant objectives for clinical teams around PROMs use; collaboration; and long-term upfront investment.

This work shows the potential collaborative working and shared ownership can have when developing of novel data sets. Next steps will include disseminating the Core Principles, and evaluating their impact.

Thanks to Kelly Baillie for her contribution to the Core Principles’ early development. Thanks to the SC PROMs AG for their steer and support. The SC PROMs AG and Forum has patient and public involvement.