Personalising Care with Data Insights

The age of individualised care is dawning. Powerful computer platforms are beginning to cross-reference massive amounts of data stored in various medical record systems, registries, and other databases to help predict disease and treatment responses in individual patients. This should enable tailored screening, prevention, and earlier treatment that can improve health outcomes and optimise resource use.

However, while healthcare budgets hover around 10% of gross national product throughout the developed world, many people still develop preventable diseases or suffer injury or death for lack of timely treatment, said Line Kessel MD, PhD.

Personalised medicine can address this in part by using genomic, socioeconomic, and other ‘omic’ data to identify and avoid treatments unlikely to work in a specific patient in favour of treatments that will work. This is especially important for high-cost treatments, including anti-VEGF agents and highly specific cancer drugs, she added.

“At some point we are all going to have a lifelong healthcare plan that is tailored to the specific individual, and it’s all going to be based on the enormous amount of healthcare data and other data out there,” Professor Kessel said. “It is like looking into the future to see what lies ahead for all of us.”

The role of registries

Registry data can play an important role in personalising care. For example, data from the Swedish National Cataract Registry show that approximately 10% of male patients who are younger than 60 years old with an axial length of more than 25.0 mm will have a retinal detachment within 5 years after cataract surgery—a rate much higher than in other groups.¹ This enables patient counselling and post-surgery monitoring to address the risk. “That’s taking registry data to an individual level,” Prof Kessel said.

Similarly, registry data showed that children with congenital cataract were diagnosed earlier more often in Sweden, where red reflex testing of newborn infants was routine, than in Denmark, where it was not.² This is important because early surgery is required to avoid permanent visual impairment due to irreversible amblyopia, Prof Kessel noted. As a result, red reflex testing has been added to newborn screening in Denmark, as have genetic tests for several metabolic diseases with ocular manifestations.

This early testing allows for diagnosis before it’s too late for effective treatment. Indeed, while childhood visual impairment prevalence has remained stable in recent years, fewer children are blind due to retinal detachment from retinopathy of prematurity, Prof Kessel noted.³

Conversely, registry data can be used to reduce testing. For example, diabetes studies in Denmark led to recommendations for longer screening intervals for patients without diabetic retinopathy and fewer screenings for pregnant patients without retinopathy.

Comprehensive health registry data can be combined with other information, such as education level and income, to guide prevention and treatment strategies. It may even be used across generations to identify risk factors in children based on their parents’ health profiles, Prof Kessel said. Several patients with retinal disease have been discovered through genetic and pedigree screening for the RPE65 gene, enabling gene therapy.

Prof Kessel spoke at the 2025 ESCRS Annual Congress in Copenhagen.

Line Kessel MD, PhD, FEBO is professor and senior consultant at Rigshospitalet and the University of Copenhagen, Denmark. line.kessel.01@regionh.dk

1. Thylefors J, et al. Acta Ophthalmol, 2022 Dec; 100(8): e1595–e1599.

2. Haargaard B, et al. Acta Ophthalmol, 2015 Jan; 93: 24–26.

3. Kessel L, et al. Acta Ophthalmol, 2024 Nov; 102(7): 790–796.