Centre on patient-reported outcomes data

It is becoming more and more common to use patient-reported data in clinical practice and research, and health-professionals are becoming increasingly more interested in knowing how content the patients are with the health services provided. This is in line with political recitals related to user involvement in health care. Centre on patient-reported outcomes data has a national task in providing counseling and guidance on the use of PROM (Patient-Reported Outcome Measures) and PREM (Patient-Reported Experience Measures) in the medical quality registries in Norway. The Centre also assists regional hospital departments in conducting user- and patient-experience surveys.

The overall goals for the Centre for patient-reported outcomes data are:

• Provide counseling on use and analyses of PROM and PREM

• Assist the registries in choice of validated tools and, if needed, development of new tools

• Provide an overview of use of PROM and PREM in national registries

• Promote use of PROM and PREM in research and quality improvement

• Arrange national and regional seminars

• Convey information and updates on use of patient-reported outcomes through our website

• Coordinate work with PROM and PREM with other national processes

• Facilitate computer technology solutions for data capture

We provide counseling to both new and existing registries. Norway has today 59 national medical quality registries. A list of all national medical quality registries (Norwegian titles) can be foundere here.

PROM and PREM in medical quality registries

To embrace changes in health that is relevant to both the patient and the community we promote systematic collection and use of patient-reported data. Patient Reported Outcome (PRO) is central to both research and quality improvement. Examples are self-reported physical and mental health, quality of life, symptoms, compliance of lifestyle and treatment advice, and satisfaction with health services. Such data can be retrieved with specific and validated tools (PROM- and PREM-forms).

PROM is tools (questionnaires) which measures how the patients experience conditions related to health and illness and treatment effects. PROM includes measures of symptoms, functions, health and quality of life.

PREM capture a person’s perception of their experience with health care or service. This may include access and ability to navigate services, involvement in decision-making, quality of communication and their confidence in the health care providers. We provide counseling on the use of PREM in collaboration with NIPH. 

Generic or disease-specific PROM tools

PROM-tools may be generic or disease-specific. Generic tools are designed to be used in any disease population and cover a broad aspect of characteristics (constructs). Generic instruments make it possible to compare between different patient groups. In Norway, RAND-36/SF-36 and EQ-5D is the generic instruments that have been used the most.

The disease-specific or condition-targeted tools are developed specifically to measure those outcomes that are of importance for patients with a particular medical condition, and may be more useful when the goal is to capture important aspects within a specific disease- or patient group. The disease-specific tools are therefore often more clinically relevant, and are often perceived by the target-group (patients) as more relevant than the generic questionnaires.

Another group of tools are those which measure specific domains or symptoms, such as for instance anxiety, depression or pain.

You can find more information on PROMs on our external webpage (in Norwegian).