Patient-ReportedOutcome Measures (PROMs) are standardised instruments that capture patients’ self-reportedhealth status, symptoms, and quality of life, making them central tovalue-based and patient-centred care (McClimans&Browne, 2012). In theNetherlands, national policy under the “UitkomstsgerichteZorg” program hasestablished PROMs sets for key conditions and promoted their routine use inshared decision-making (Ministerie van Volksgezondheid, Welzijn en Sport, 2023).However, real-world adoption remains patchy: clinicians face workflowintegration hurdles and time constraints, patients often lack feedback or clearincentives to participate, and economic justifications for PROMs investmentsare underdeveloped (van Engen, van Lint, et al., 2024; Huberts et al., 2024). Moreover,while patient organisations are formally involved in Dutch health governance,their potential to advocate for, educate about, and co-design PROMs initiativeshas not been systematically harnessed (van de Bovenkamp et al., 2010). Thisstudy addresses the central question: How can patient organisations effectivelyenhance the use of Patient -Reported Outcome Measures in Dutch clinicalpractice to maximise value for patients? Employing a mixedmethods design, itfirst conducts a targeted literature review to map barriers (e.g., digitalliteracy gaps, lack of workflow integration, General Data Protection Regulation(GDPR)related consent complexities) and enablers (user -friendly ICT platforms,clear clinical responsibilities, actionable feedback loops) across micro, meso,and macro levels (Sawatzky etal., 2021; Oude Voshaar et al., 2023). Next,semi-structured interviews with representatives from leading Dutch patientorganisations will explore their perspectives on these factors and investigateco-creative strategies for PROMs implementation. Finally, a Social Return onInvestment (SROI) analysis, using data from a Dutch academic cancer centre andnational health statistics quantifies the projected social and economic impact ofprioritised interventions (Social Value UK, 2012). Preliminary findings suggestthat patient organisations can play pivotal roles in (1) advocating for the toolsthat will remove barriers such as language barriers and low health literacy,and (2) advocating for the voice of patients when creating and implementingPROMs in clinical practice. Moreover, (3) facilitating workshops on the PROMsto increase engagement and expand knowledge, (4) leading public awarenesscampaigns and collaborating with other patient organisations to emphasise thepersonal and system-level benefits of PROMs. Furthermore, the SROI analysisindicates that hospital-level deployment yields a modest return of =C 0.20 forevery euro invested. However, scaling up to the national level increases thereturn to =C4.57 per euro. This further emphasises the need for widespread, coordinatedefforts to realise the full potential of PROMs. Keywords: PatientReportedOutcome Measures, value-based healthcare, patient organisations, barriers andenablers, Social Return on Investment.
Related dataset 4TU.ResearchData:
https://doi.org/10.4121/uuid:a6aba8e1-9019-47a9-ad07-49fed049944a