Over the past 15 years, patients in Denmark have completed over 260,000 patient-reported outcome and experience measures (PROMs and PREMs, respectively).
That amounts to over 13.5 million completed questionnaire items.
Today, PROMs are a solid fixture of routine care for 35 diseases in 10 different branches of medicine in Denmark.1 PREMs also have found wide application.
Few countries have been able to implement these patient surveys with the scale and success of this Scandinavian front runner: Here, they support patient monitoring, shared decision-making, and individualized care.
But what exactly lies behind Denmark’s success? Which strategies can be distilled from the Danish model for the efficient and, most importantly, actionable use of patient-reported questionnaires in routine clinical practice?
A common theme
Upon closer inspection, a common theme emerges in the Danish use of PROMs and PREMs.
From individual hospitals to top-down healthcare policy, PROMs and PREMs are anchored in the inclusion of patients and their systematic integration into clinical routine via an interoperable technical infrastructure.
Below, we’ll break down this trend into four strategies.
1. Widespread top-down support
In 2006, Harvard economist Michael E. Porter coined the term “value-based healthcare” (VBHC). According to Porter, healthcare quality ought to be measured by patient outcomes per unit cost. To remain competitive, healthcare systems would have to improve patient outcomes while reducing resource expenditure.
The Danish government was one of the first worldwide to act on this tectonic shift in our understanding of healthcare. The Danish relationship to PROMs and PREMs is retraceable to the 2005 Danish Healthcare Quality Program, but healthcare policy of the mid-2010’s was the catalyst for the elevation of PROMs onto the national healthcare agenda. During this time, several quality programs and initiatives came into effect to begin the implementation of VBHC. The core of these programs was to nourish patient centricity and sustainable resource allocation.
While these programs laid the foundation for VBHC in Denmark, the 2017 Transparency Reform accelerated the widespread standardization and implementation of PROMs. A comprehensive financial agreement and poster child for flourishing healthcare federalism, the Transparency Reform helped to coordinate between national, regional, and communal governments to enhance the position of PROMs in Danish healthcare. Furthermore, it formed allocated for the formation of cross-governmental steering group as well as interdisciplinary clinical coordination groups. These groups would serve to solidify the use of PROMs in clinical routine.
Today, the clinical coordination groups decide how, when, and where PROMs are inserted along care pathways. All relevant stakeholders – patients, healthcare professionals, lawmakers – are represented. Patients evaluate questionnaires for comprehensibility and relevance, and health professionals test if the questionnaires fulfill their purpose in augmenting clinical practice with outcome data.
2. Patient involvement in design and selection of PROMs and PREMs
The UNITY platform is a ready-to-use, FHIR-based EDC & ePRO software for the integrated collection of patient-reported data.
3. Accessibility and actionability via integration
Another Danish strategy for engaging patients and doctors is the accessibility and actionability of PROM- and PREM-data. The Danish model illustrates the importance of using the same, user-friendly
For 28 diseases, physicians and patients use AmbuFlex. In the Central Denmark Region, AmbuFlex is currently in use for more than 24,000 patients across 18 different patient groups.5 In essence, AmbuFlex is a modular electronic PROM (ePROM) solution that supports:
- The systematic and automated collection of PROM questionnaires.
- Integration of PROM-Data in patient’s electronic health records (EHR).
Doctors and other healthcare personnel can access and view results with a single click from a patient’s EHR. Doctors, on the one hand, can use color-coded PROM results to identify salient changes in patient health status, which then guide in-person consultations. Patients, on the other hand, receive an additional opportunity to communicate difficult or even tabu topics.
The Danish National Registry requires the transmission of certain PRO data. One drawback of the current ePRO system is that healthcare personnel must manually enter these data into the registry, which costs time money and poses risks to data quality.
4. Artificial intelligence for the evaluation and interpretation of PROM data
Now let’s take a closer look at how PROMs are used in one of the 35 diseases. PROMs have been an established part of epilepsy care since 2011. Here, they serve to fill an identifiable gap in care.
The observation that epilepsy patients were undergoing costly, unnecessary outpatient care – yet still needed careful monitoring for functional and mental health issues – drove the introduction of PROMs. Now, PROMs results are analyzed with an algorithm that:
- Interprets the results.
- Determines if patients require an additional out-patient consultations.
- Filters patient needs and patient care urgencies.
A 2015 study showed that unnecessary face-to-face consultations for outpatients with epilepsy was reduced by 48% using AmbuFlex and PROMs.5
Based on the answers, the algorithm sorts patients into different “stoplight” groups. Red patients are advised to visit an outpatient clinic. Yellow patients are contacted by phone. Green patients may forego an outpatient consultation until they are reevaluated with their next regularly scheduled PROM. This system helps tailor care to individual patient needs, while avoiding unnecessary and costly visits.
Conclusion
The UNITY platform shares many features with Denmark’s widely applied ePROM-Software, but also expands on them. It fully automates communication with patients and the distribution of customizable PREMs based on unique patient attributes or hospital experiences. Additionally, it can automate the export of PROM, PREM, and case report form (CRF) data to existing registries.
Read more here about our UNITY Platform – our comprehensive, integrateable PROMs and PREMs solution.
- Schougaard, LMV (2020): Patient-reported outcome measures in remote outpatient follow-up. PhD Dissertation. Aarhus University.
- Zinckernagel, L. et al. (2017): How to measure experiences of healthcare quality in Denmark among patients with heart disease? The development and psychometric evaluation of a patient-reported instrument. Zinckernagel L, et al. BMJ Open.
- Kristensen, S. et al. (2018): Conceptualizing patient-reported outcome measures for use within two Danish psychiatric clinical registries: description of an iterative co-creation process between patients and healthcare professionals. Nordic Journal of Psychiatry, 72:6, 409-419.
- COSMIN (2018): COSMIN methodology for systematic reviews of Patient-Reported Outcome Measures (PROMs). User Manual.
- Regionmidtjylland www.rm.dk/sundhed/faginfo/center-for-telemedicin/in-english2/projects2/ambuflex-and-pro/