Together with 34 European partners, DiCE participated in the preparation of the FOLIO (Sustainable FramewOrk for systematic quality of LIfe measurement and assessment for cancer patients and survivOrs) project proposal. This is in the context of the Research and Innovation actions supporting the implementation of the Mission on Cancer promoted by the European Commission.

The main goal of the FOLIO project is to identify determinants of patient unmet needs and preferences and ensure patients and survivors are at the centre of healthcare, labour market and social protection policymaking.

About the Proposal – Establishing a Network of ‘Living Labs’

With the support of academic partners, research organizations and patient advocacy Associations the FOLIO project will establish a network of ‘living labs’. These will foster focus group discussions to capture key elements of quality of life and determinants of unmet needs from cancer patients and survivors across 18 EU and associated countries.

It will develop and validate disease-specific instruments ,which can detect and quantify subtle changes in determinants of health and quality of life, and accurately inform clinicians, patients, and survivors.

Using Computerized Adaptive Testing

Through computerized adaptive testing and new technology, an optimal test for each patient and survivor will be constructed by adapting the questionnaire to each individual and only ask questions that are most relevant to them. Because of the nature of the technology, their delivery can also incorporate elements of gamification, which can increase individuals’ motivation and engagement.

In addition to patients’/survivors’ perspectives, FOLIO will also capture and reflect the perspectives of health care professionals, regulators and health and social policymakers. With the delivered system of actionable insights, FOLIO will design new sensible (risk) assessment metrics and models, to evaluate the performance and efficiency of health and social policies on the population level (for regulators and policymakers) and, on an individual level, to estimate the short- and long-term impact of cancer and treatment and interventions for health care professionals.

Connecting 35 Partners from 18 Countries

FOLIO connects 35 partners, from 18 countries and multiple disciplines, including medical sciences, technology and natural sciences and social sciences and humanities. 23 partners of these partners represent patients and survivors, medical societies and regulators/policymakers, 9 partners represent academia and research organizations, and 3 partners are Small to Medium Enterprises.

DiCE and the project partner are now waiting for a positive outcome on the project to be able to start work – updates coming soon!

Would you like to know more about the FOLIO project or about possible partnerships with DiCE? Please contact us.

Author:
Catie Young