Data collection is the basis for epidemiological and outcome studies, evaluation of new techniques, guidelines, and quality improvement.

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.
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.