This blog is part of our series on the issues related to the transferability of outcomes, for national decision making. You can follow this link to read our other blog posts on this topic.
The ongoing discussion about the use of Real-World Data as input into RWE studies for decision making can be summarized in these three points:
- The data should be validated, with high quality and transparent
- Applicable population
- The appropriate comparator
Should this be the case, one could suggest that the whole world should be using Swedish data sources. These sources of data are quite likely to be among the best in class, in terms of quality and validity, as well as an applicable population at most times since it covers the whole population and not always the appropriate comparator.
Intuitively most of us would think that this is an ignorant proposition. What relevance would the Swedish data have for example in the US? Or maybe, even within Europe?
There are many research questions, where it is possible to transfer the results from a study in Sweden to other settings/countries. This is also recognized by FDA who use a Swedish example in their guidance document (Page 42):
Here is a listing of some of the validation / descriptive studies that exist for the national registries as well as the disease-specific registries. Frankly, there are very few datasets that can compare with this quality of data.
There are also many research questions, where the results are not transferable from a Swedish context to other countries due to the difference in health care delivery. See previous blogs on this topic.
Even though as a Swedish company, we would very much appreciate if it was that simple that the Swedish data had relevance for most types of research questions. However, we don’t think it is the case.
The richness and quality of the data deserve a much broader utilization, but the relevance to the country-specific questions from decision-makers should be carefully considered.
- For updates on our findings, please join the LinkedIn group (Evaluating Transferability of Real World Evidence) where we look forward to your feedback as we share further insights.
- Feel free to also comment on the LinkedIn post.
- National patient registry
External Review and Validation of the Swedish National Inpatient Register; Jonas F Ludvigsson 2011
- Cancer registry
The completeness of the Swedish Cancer Register, a sample survey for year 1998; Lotti Barlow 2009
- Drug registry
The new Swedish Prescribed Drug Register, opportunities for pharmacoepidemiological research and experience from the first six months; Björn Wettermark 2007
- The first decade with the Swedish prescribed drug register–a systematic review of the output in the scientific literature; Sussana M Wallerstedt 2016
- Cause of death
The Swedish cause of death register; Hannah Louise Brooke 2017
Disease-specific registries / questions
- Completeness and Correctness of Cholecystectomy Data in a National Register--GallRiks’; Rystedt et al.
- External Validation of the Swedvasc Registry; Troëng et al.
- Internal Validity of the Swedish Maternal Health Care Register; Petersson et al.
- International Vascunet Validation of the Swedvasc Registry; Venermo and Lees
- On the Validity of the Results from the Swedish National Total Hip Arthroplasty Register; Söderman
- The Swedish Knee Arthroplasty Register 1975-1997; Robertsson et al.
- The Swedish Spine Register : development, design and utility; Strömqvist et al.
- Tumour Staging of Oesophageal Cancer in the Swedish Cancer Registry: A nationwide validation study; Brusselaers et al.
- Validation of Diagnoses of Transient Ischemic Attack in the Swedish Stroke Register (Riksstroke) TIA-Module; Buchwald et al.
- Validation of the Swedish Multiple Sclerosis Register: Further Improving a Resource for Pharmacoepidemiologic Evaluations; Alping et al.
- Validation of Obesity Surgery Data in the Swedish National Patient Registry and Scandinavian Obesity Registry (SOReg); Tao et al.
- Validation of Oesophageal Cancer Surgery Data in the Swedish Patient Registry; Lagergren and Derogar
- Validation of Reoperations Due to Infection in the Swedish Hip Arthroplasty Register; Lindgren et al.
- Validation of Surgical Site Infection Registration in Colorectal Surgery; Jonsson et al.
- Validation of the Date of Surgery for Esophageal Cancer in the Swedish Patient Registry; Lagergren et al.
- Validation of the Swedish Knee Arthroplasty Register: A postal survey regarding 30,376 knees operated on between 1975 and 1995; Robertsson et al.
- Validity of Humerus Fracture Classification in the Swedish Fracture Register; Wennergren et al.
- Validity of Register Data on Acute Myocardial Infarction and Acute Stroke: The Skaraborg Hypertension Project; Lindblad et al.
- Validity of Reported Data in the Swedish Cardiac Arrest Register in Selected Parts in Sweden; Strömsöe et al.
- Validity of the Swedish Cardiac Surgery Registry; Vikholm et al.
- Validity of the Swedish Rectal Cancer Registry for Patients Treated with Major Abdominal Surgery between 1995 and 1997; Jörgren et al.