Table 3 Summary of barriers and facilitators at different levels of health care for using NQRs with illustrative quotes

Innovation

Double administration due to technical constraints or safety and legal barriers in integrating databases. Low data quality due to incorrect data and low coverage.

“You can visit each clinic, connect to the registry and show “this is how you are doing”. We assume of course that the heads of the units do the same.” (Registry team member, NQR5)

Technical development and increased competence, links to national guidelines, and randomisation possibilities.

“It would be best if a patient with [diagnosis] uses the registry as a place to register and that you thereafter can export these data to the medical records, instead of the way many are testing now, to transfer data from the medical records to the registry.” (Registry holder, NQR5)

Individual profession

Lack of mandate on behalf of the registry holders to force units to register data or use data for QI work. Lack of interest in registry work on behalf of the healthcare professionals.

“We believe that we make data available, but someone has to request the data.” (Registry holder, NQR7)

Increased interest in and demand for QI work and research. Linkage between national guidelines and NQRs. Increasing number of enthusiasts with a strong belief in the value of NQRs.

“In order to stimulate as many as possible to get started, we show what has been done, ongoing projects and which areas that have not been researched.” (Registry holder, NQR8)

Patient

Lack of computer skills and computer access was as well as survey saturation among patients. Not all diseases well suited for self-care.

“… it is not very easy to understand this [output data]; it quite often requires some explanatory text for it to be meaningful and the results understandable.” (Registry holder, NQR5)

Active patients and patient organisations. Increased use of PROMs and PREMs in QI work and in the patient-caregiver meeting.

“Of course active patients facilitate, an active patient organisation that demands [information]. When the demand increases, the demand on delivery also increases.” (Registry team member, NQR1)

Social and organisational context^a

Lack of time, money, and personnel. Problems with incompatible IT-systems and lack of demand from management and principal administrating employers.

“This takes too much administrative time, it takes time away from patient time. This is the most important issue to solve.” (Registry holder, NQR8)

Recent trends focusing on QI, value-based health care and patient-centred care. QRCs giving support to the production of annual reports, performance of statistical analyses, and QI work. Regular meetings on national or regional levels.

“There has been a paradigm shift towards value-based health care, which fits perfectly with the introduction of PROMs and PREMs… information we can use for important research.” (Registry team member, NQR5)

Economic and political context

Lack of money and integration between medical records and IT-systems. Top-down steering (such as the national initiative) whereby the enthusiasm for involvement in NQR work is dampened.

“I think that there has sometimes been too much of a top-down perspective on what is to be accomplished and very little of asking questions like: what is it you want to accomplish in these areas? With what do you need help?” (Registry holder, NQR2)

Contemporary national healthcare investments promoting an increased interest for QI and public benchmarking. Large investments put into the registries.

“In pure economic terms it has of course been very good to have access to a little more money thanks to this initiative, as it has given us the opportunity to develop other parts of the registry.” (Registry team member, NQR3)