OPHTHALMIC REGISTRIES

A new international working group led by Mats Lundstrom MD PhD, Karlskrona, Sweden, is developing uniform outcomes measures for cataract surgery and other ophthalmic treatments. The ophthalmology group is one of several speciality-specific groups organised by the International Consortium for Health Outcomes Measurement (ICHOM). Harmonising outcomes definitions globally is essential to benchmark performance across borders and compare research conducted in different locations, Dr Lundstrom told EuroTimes. It may also eventually enable consolidated global outcomes registries.

Founded by the Institute for Strategy and Competitiveness at Harvard Business School, the Boston Consulting Group in the US, and the Karolinska Institutet in Sweden, ICHOM’s goal is to use global outcomes data to drive system changes that increase the value of health services for patients and communities. This will be done in part by giving greater weight to functional outcomes that patients value highly, such as being able to read comfortably or drive at night after cataract surgery. ICHOM currently partners with 50 disease registries in 20 countries. The not-for-profit group provides a central repository for information about outcomes measures as well as a forum for designing and harmonising measures and analytic tools such as case severity adjusters among registries. It also facilitates data collection and analysis to support clinical and system process improvement. The consortium held its inaugural conference in November of 2012.

International effort

In addition to Dr Lundstrom, who led development of the ESCRS-supported European Registry of Quality Outcomes for Cataract and Refractive Surgery (EUREQUO), the ICHOM ophthalmology working group includes William L Rich III MD, who heads the American Academy of Ophthalmology’s effort to develop its own ophthalmology registry; Ravi Ravindran MD, of the Aravind Eye Hospital System in India; Nigel Morlet MD, who operates registries in Western Australia; Goh Pik Pin MD of Malaysia; and Anders Bohman MD, also of Sweden. “The group is not complete yet; we need someone from the UK because they also have a large cataract database,†Dr Lundstrom observed. The first steps of the working group, which are already under way, include a review of those outcomes measures now in use and an assessment of what measures should be included in all registries. The group will then review, choose and define a limited set of measurements that will be meaningful, but not too burdensome to collect. These will include variables for visual outcome, refractive outcome, complications and patient-reported outcomes. Demographic and case mix variables, as well as risk adjusters, also will be defined to facilitate meaningful comparisons across diverse populations and systems.

Dr Lundstrom expects that draft cataract outcome measurements will be available for comment by the end of the year. The aim of ICHOM is to cover as many ophthalmic registries as possible. “Cataract surgery should be step one, then retina, glaucoma and corneal transplant.†Experts in each subspecialty will be recruited to develop measurements, he said. Dr Rich pointed out that standardising outcome measurements, while desirable, requires expertise – which is why Dr Lundstrom was chosen to lead the working committee. “He knows from EUREQUO the difficulty of harmonising databases.†Integrating data from India and other developing countries presents even greater issues than harmonising European databases because the populations and health systems are so different, Dr Lundstrom noted. However, he believes that it will be possible to develop a meaningful common data set with the help of systems such as Aravind, which does hundreds of thousands of procedures annually and has its own electronic record system, which is much more detailed than a national registry.

EUREQUO is one of several ophthalmology databases AAO is examining as it develops its own registry, Dr Rich added. AAO is also working with the Featherstone Informatics Group on a registry framework that can receive data from any type of electronic record, as well as accommodate new measures and conditions layered on top of an existing database. ICHOM has no working agreement with the AAO or our vendor FIG to make our data or materials available to anyone else, he said. Such a flexible interface would greatly reduce the cost of changing measures, Dr Lundstrom said. It also would make it easier for clinics with different electronic record systems to contribute data without the need to develop a specific interface for each software package. “We have to get rid of the need for double entry,†he said.