The Swedish Hernia Register
The Swedish Hernia Register contains data on all groin hernia repairs performed in patients aged 15 years or older. The register was initiated in Motala in 1992 by Professor Erik Nilsson. In the beginning it included eight units. Today more than 90 units are members and almost 100% of all hernia repairs performed in Sweden are registered. A database covering more than 200 000 repairs has been assembled.
In 2004, the register administration was moved to Östersund Hospital, and since then the County Council of Jämtland has taken responsibility. Associated professor Pär Nordin is chairman of the Register Committee, and Annika Enarsson is the register secretary. The chairman as well as the secretary is stationed at Östersund Hospital.
The Register Committee comprises 15 people who meet twice a year. An external validation of the register is performed annually by a physician who compares recorded data with patient notes at 7-10 randomly selected units.
Purpose and aims
• To survey the development of hernia surgery in Sweden in terms of methods of repair, waiting times, care policies, and results.
• To create a reliable base for local evaluation of treatment outcome
• To enable epidemiological studies and support prospective randomized controlled trials
Financing
The Swedish Hernia Register is subsidized by the National Board of Health and Welfare and the Swedish Association of Local Authorities and Regions. Member hospitals also pay a sum to the register for each recorded repair. The charge at present is 30 SEK per repair. There are no commercial sponsors of the register.
The Personal Data Act
Registration of hernia repairs forms a part of a national program aimed at improving health care. The County Council of Jämtland is responsible for the register. A report of major outcomes of the register is produced each year. Registration of hernia repairs is voluntary, every patient is requested permission to enter their hernia repair data in the register.
Should you not wish to be included in the register, please inform your physician.
What information is included in the Register?
The Swedish Hernia Register includes information on method of repair and anesthesia, anatomical circumstances, and general information about the surgeon, patient and surgical procedure. The register also includes information on adverse events after the procedure.
Data on waiting list times prior to surgery are also recorded.
Sweden has an independent website "Väntetider i vården", where estimated waiting times for different procedures in each County are given
How can the register data be used?
The primary aim of the register is to improve hernia care at the member hospitals. The data also form the base for scientific research. Research projects aimed at exploring risk factors for complications and long-term pain after hernia surgery, comparing different mesh materials and fixation techniques, assessing methods of repair for recurrence, and repair in women are presently under way.
Quality control of hernia surgery in Sweden is an important function of the register. The reoperation rate can be used as a reverse measure of health-care quality.
Who is responsible for the Register?
Each unit reporting to the register is responsible for the accuracy of data recorded. The Register Committee is responsible for processing data and presenting them in an adequate way.
Participation in the register is voluntary for hospitals and operating units and, of course, for the patient. The patient should always be asked whether he or she accepts that their repair is recorded in the register. Further information is provided in a brochure "patient information", which is given to the patient prior to the procedure.
The National Board of Health and Welfare and the Swedish Association of Local Authorities and Regions support the register economically, but are not responsible for the information provided at this website. There are no commercial sponsors of the register.
Results
A nationwide report and reports specific for each unit are published each year. Data are presented on the Swedish Hernia Register website provided by INCA. At the website are also reports for each county, including all public as well as private units in the county. These are available as PDF-files from the list of participating units.
Each repair recorded in the register is followed up from repair until eventual reoperation. This enables an estimation of the cumulative reoperation incidence.
Data interpretation
Data from the register shows that there are differences between clinics. The reasons behind these differences, however, cannot be determined. Differences in outcome may be due to circumstances that vary between clinics. Units that perform more emergency surgery, more reoperations after previous repair, or more technically demanding repairs may, for example, have more postoperative complications, higher rates of recurrence and longer hospital stay. Comparisons not taking these circumstances into consideration are thus misleading.