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Disease registries guide value-focused choices in health care in Sweden
Data collection is the basis for epidemiological and outcome studies, evaluation of new techniques, guidelines, and quality improvement.
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 Anders Behndig |
As the economic downturn places pressure on the Swedish health care system to contain costs and optimize resources, collection of data through disease registries in the country has become a powerful tool for fundraising and value-focused investment.
“With data in hand, it is easier to argue for money with county health authorities and hospital administrators,” Anders Behndig, MD, PhD, president of the Swedish Society of Ophthalmology, said.
The Swedish National Cataract Register (NCR) was the first to be instituted, in January 1992, thanks to the initiative of three ophthalmologists: Mats Lundström, MD; Ulf Stenevi, MD; and William Thorburn, MD. Data were rapidly transmitted from all over the country, allowing close monitoring of 98.5% of all cataract operations in Sweden.
“People understood the value and potentials of the initiative and joined quite instantaneously,” Dr. Behndig said.
Over the years, similar registries were developed for pediatric cataract, corneal transplant, age-related macular degeneration and refractive surgery. Besides providing epidemiological data, they have helped to generate hypotheses for outcome studies and allowed evaluation of new techniques, quality improvement and the development of national guidelines.
“Many clinics in Sweden do cataract surgery and corneal transplantation or treat macular degeneration. But the majority of them don’t have such a high volume of patients for each procedure. Joining data was crucial to draw conclusions,” Dr. Behndig said.
Thanks to the NCR, important discoveries were made in cataract surgery concerning, for instance, the effectiveness of intracameral cefuroxime in the prevention of endophthalmitis.
“The use of intracameral cefuroxime was evaluated in a larger study by the [European Society of Cataract and Refractive Surgeons], but the Swedish experience was the starting point, and the endophthalmitis register within the NCR played a role,” Dr. Behndig said.
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The NCR also enabled early detection of problems with certain IOLs and provided nearly immediate evidence of improved outcomes after the introduction of new surgical techniques.
“Data collection and evaluation is the basis for development and improvement in health care,” Dr. Behndig said.
The registers are now coordinated by EyeNet Sweden and sponsored by the joint organization of Swedish counties.
Challenges
There are a total of 724 ophthalmologists in Sweden, nearly all of them members of the Swedish Society of Ophthalmology.
“Because of this very high membership, we are a strong organization, able to reach, serve and act in the interest of all members,” Dr. Behndig said.
A major challenge taken on by the society is creating a new, updated education program for ophthalmology. The program is currently focused on retina but will gradually extend to other subspecialties.
Renewing the focus on research is another goal of the society.
“Medical research has slowed down in recent years. Physicians, and ophthalmologists in particular, are deserting it because research is poorly paid and entails, nowadays, complex and cumbersome practices. There was a time when it was funded by the state and it was easy to apply and get money for it. But now researchers spend almost half of their time applying to different funds and even have to apply for their own salary in some cases. Being a researcher is not an easy choice nowadays,” Dr. Behndig said.
The migration of ophthalmologists from public hospitals to the private sector is another trend that is raising concern.
Sweden has a strong tradition of public health care. Private practices are few and are mostly dedicated to refractive surgery.
“There is a danger that a shift to private practice may destabilize a system that has been so far focused on patient needs. We don’t want this to happen, as much as we don’t want to allow the ‘brain drain’ to other countries, like Norway, where ophthalmologists are better paid,” Dr. Behndig said.
Organization
Health care delivery in Sweden is mainly hospital-based. In ophthalmology, hospitals provide referrals as well as primary care services. The government stipulates the basic principles for health care services, but responsibility for financing and providing health care is decentralized to the county councils.
“There are 21 counties in Sweden, and they are more or less self-governing when it comes to health care. Therefore, what you can or cannot do can be quite different according to the region you live in. For anti-VEGF therapy, for instance, some counties reimburse Lucentis, some don’t. There are five counties, including ours, where we only get reimbursement for Avastin. Premium procedures are normally not paid for, but there are three counties where co-payment is admitted,” Dr. Behndig said.
On the whole, he said, the needs of the Swedish population are well covered for ophthalmology, both in the more densely populated urban south and in the less populated, more rural north of Sweden. – by Michela Cimberle
For more information:
Anders Behndig, MD, PhD, can be reached at the Department of Clinical Science, Ophthalmology, Umeå University Hospital, SE-901 85 Umeå, Sweden; +46-(90)-785-24-23; fax: +46-(90)-13-34-99; email: anders.behndig@ophthal.umu.se.
Disclosure: Dr. Behndig has no relevant financial disclosures.