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Table 4 Summary of the NQR management’s action strategies to enhance the use of registry data with illustrative quotes

From: One size fits none – a qualitative study investigating nine national quality registries’ conditions for use in quality improvement, research and interaction with patients

Intention/goal

Activities

Quotes

To ensure that correct and complete data is registered

- Validation of data entered into the registry

- Direct data entry

- Online access to registered data

“We get more and more information so that we can evaluate different treatment methods and show which methods are ineffective and try to remove them.” (Registry holder, NQR4)

To ensure that accessible, updated, and understandable information is available

- Presentation of registry based research at scientific meetings

- Presentation of registry reports at regional and/or local meetings with involved professionals

- Visits to clinical units to discuss results and registry issues

- Annual reports

“We raise the question and talk about it, describe it on the website, we have it in educations and so on in order to stimulate interest. Our steering committee also knows about it and collects the results. We find many interesting things in need of further research.” (Registry team member, NQR6)

To intensify cooperation with target groups

- Providing updated information focused on important quality measures that are easy to use in improvement work

- Invitations to clinical units to participate in QI collaboratives

- Targeted approaches to clinical units in need of support

- Having patient representatives in the registry steering committee

- Using registry data in the patient consultation

- Supporting researchers in accessing and using registry data for research purposes

“We will contact a number of clinics and say - we see that you are quite obvious having problem with these things, would you like help in structuring an improvement project?” (Registry holder, NQR2)

“Before a clinical visit, patients are actually sitting at home or at the clinic and using a tablet or a computer to fill in a short survey regarding PREMs, i.e. participation and information, and PROMs, i.e. potential side effects from treatments. And then he/she comes to me and we click and there it is and then we are interconnected.” (Registry team member, NQR5)