by University of Strathclyde, Glasgow

Credit: Pixabay/CC0 Public Domain

A new Scotland-wide toolkit is supporting the collection of patient-reported outcome measures (PROMs) to understand the impact of treatment.

The Scottish Cancer PROMs Toolkit has been designed for those working in health and social care, as well as digital and pharmaceutical companies. The toolkit was developed with a focus on cancer but can be applied to any clinical area.

Beyond cancer

It's hoped it will help health care teams collect data that matters to them and people living with and beyond cancer, to help drive shared decision making and to understand the impact of treatment at individual through to population levels.

It was developed by the Scottish Cancer PROMs Advisory Group, co-founded in 2021 through a collaboration between NHS Scotland Health Boards, the University of Strathclyde and Public Health Scotland and the Cancer Medicines Outcomes Program–Public Health Scotland (CMOP–PHS).

Emma Dunlop, Research Fellow at Strathclyde Institute of Pharmacy and Biomedical Sciences, CMOP–PHS team member and Co-Chair of the Scottish Cancer PROMs Advisory Group, said, "We need to better understand the real-world impacts for people receiving treatment, especially their quality of life, which can impact how they move through the NHS with regards to the use of other medications or any hospital admissions."

"People involved in clinical trials tend to be younger and fitter with fewer health concerns, so we need evidence to give an idea of how medicines are affecting people day to day, and what side effects they may be experiencing, such as impact on sleep.

"PROMs data aren't routinely collected in Scotland, and we need a more cohesive message to help drive this change."

Core principles

Through collaboration with stakeholders including, but not limited to patients, members of the public, charities and health care professionals, the SC PROMs AG developed 10 core principles on what things to consider when collecting and introducing PROMs into clinical pathways of care. The toolkit also includes links to the evidence-base. The Advisory Group says that collecting such data can inform next steps and drive improvements in both care and health services.

Emma Dunlop added, "The voice of people living with and beyond cancer is so important, and PROMs data provides intelligence with which we can benchmark and measure success against.

"We hope that the toolkit, and especially the core principles, can act as a checklist for PROMs implementers within and beyond cancer, and hope it can be used as a roadmap."

The free toolkit is hosted on the NHS Education for Scotland training platform.

Provided by University of Strathclyde, Glasgow