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Table 5 Results of expert interviews related to the component Technology of the HIS Evaluation Framework

From: Improving quality of care through patient-reported outcome measures (PROMs): expert interviews using the NHS PROMs Programme and the Swedish quality registers for knee and hip arthroplasty as examples

NHS PROMs Programme Swedish Quality Registries: SHPR and SKAR
Selection of PROMs
Generic and health condition specific measure complement each other
Generic measure in general, and EQ-5D in particular
+ enables comparisons across health conditions, procedures, and countries
+ can be transformed into a utility measure which is most valuable for economic analyses
- won’t pick up much variation
- won’t pick up the impact of a specific health condition on a person’s overall life and well-being
Data collection of PROMs
 + Data linkage with the National Joint Registry is important – adds value with the 1, 3 and 5 years follow-up  
Time points for data collection need to be standardized e.g. Baseline: it matters whether the questionnaire is filled in when the decision of surgery is made or when the patients shows up for surgery. In some countries the time in between these time points may be more than a year; how much patients deteriorated in this time would be an important question in itself but challenges comparability if the time point is not standardized.
Follow-up 6 months post-surgery Though one expert stated it is effectively 6–10 months post-surgery
 - From clinical point of view: too short
 + From a quality management point of view, reasonable time frame to collect, analyse the data and return the results to the hospitals so that they can act upon them
Follow-up for 1 and 6 years post-surgery Rationale for 1 year: to ensure patient is rehabilitated properly Rationale for 6 years: time when most of the complications, such as loosening, may start to occur
SHPR: Follow-up mechanism created coincidently a channel for communication between patients and clinicians: when patients return the follow-up questionnaires to the clinic they comment on how they are doing and provide occasionally feedback on the procedures
Data linkage
  + Unique Swedish Identifier Number is of great value for the linking with other Swedish databases, e.g. inpatient registry, prescribing drug registry, or spine registry
+ Linkage with databases in other countries is particularly valuable for research questions related to rare diagnoses or prostheses
 - Linkage is not always straightforward since there is no unique identifier  
 - Logistics, bureaucracy and ownership of the data complicates linkage ➔ expert suggested that ideally all national data collection efforts would be under guidance and jurisdiction of one organization
NHS PROMs Programme was set up to not duplicate but rather complement already existing databases, e.g. Hospital Episode Statistic, National Joint Registry ➔ linkages with these datasets are essential to generate a comprehensive database with various socio-demographic information and information related to the health condition and intervention
Some experts suggested to integrate the PROMs data collection into routine hospital records rather than having a separate database
  1. Supporting factors are indicated with a “+”, hindering factors with a “-”, and neutral statements related to the system, including considerations for the future with a “”. For the two Swedish registries, it is explicitly stated if a statement was only provided for one registry. No inferences can be made that this does or does not apply to the other registry since no information on the topic was given by the experts of the other registry