31 May How to overcome the catch-22 in precision medicine

Improving the patient experience will go a long way.

By Patrick Short, MedPage Today

There’s a catch-22 in precision medicine research that some readers will be very familiar with. Healthcare providers and insurers won’t offer genetic testing for patients diagnosed with diseases unless there’s an approved therapy they could benefit from. Yet, without large-scale testing and the genomic data it yields, researchers can’t identify relevant biomarkers and develop targeted treatments.

When a new precision medicine designed to treat a genetically-defined population does make it to the trial stage, researchers suddenly need to find enough patients with the specific rare genetic variant to take part in studies — and quickly. But most patients won’t know whether they’re eligible or not because they’ve never had an opportunity to be tested.

Large-scale genetic databases and biobanks include individuals with the particular genetic subset of a disease — but, frustratingly, due to the way many of these programs were historically set up, it can be impossible to recontact people and invite them to take part in further research.

In order to advance precision medicine, we need to focus on improving outreach to and the experience of patients. Read more …