Lords: e-records essential for genomics

The government has been urged to place the development of a national electronic health record system at the top of its agenda to secure the full benefits of genomic medicine.

The recommendation is made in a wide-reaching House of Lords report that urges the NHS to prepare for huge changes as DNA testing becomes more commonplace in diagnosis and treatment.

The science committee report says the health service is not ready for the impending genetic revolution and requires urgent reform to turn scientific advances into better patient care.

It says the NHS needs to revamp its provisions for genetic testing, the training of doctors and nurses, and its IT and laboratory services, if understanding of the human genome is to deliver health benefits to patients.

Among the specific actions recommended are far more powerful IT tools, to enable genetics data and tests to be better used and held as part of patients’ electronic records.

The report says the greatest benefits from genomics data will come “when the information can be linked to the medical records”, which means standardised electronic records need to be widely available.

It says: “We welcome the progress that NHS Connecting for Health and the Research Capability Board have made in this area. However, in order for us to realise the full potential of genomic medicine, the government must put the development of a national electronic health record at the top of its agenda.”

In the US, trailblazers like Partners Healthcare have already begun to pioneer electronic patient records that integrate genetics data and latest research.

The Lords report says genuine public concerns about such ‘data linkage’ “must also be addressed if we are to be able to realise the full benefit of genomic medicine.”

Lord Warner, a former health minister who sat on the committee, said: “The people who have been working in this area, they are ready, though sometimes they are frustrated about access to kit.

“But the great mass of people working in the NHS outside genomic medicine are probably for the most part only dimly aware that this is going on.”

Among the other actions recommended in the 646 page report are a new white paper, with a plan for incorporating genomics into the NHS, and long-term funding to support training and research.

The report says that genetic medicine has rapidly developed since a 2003 white paper on genetics urged the NHS to focus on the diagnosis and management of rare inherited diseases caused by mutations in single genes.

Significant progress has been made in using genomics to tackle common diseases such as cancer, diabetes and heart disease, in which large numbers of genes are implicated.

However, the speed of development has left the NHS lagging behind. “The use of many types of genomic tests is increasing rapidly, both in the NHS and in tests sold directly to consumers, and the availability of these tests will, in time, have a dramatic impact on disease diagnosis and management.”

The report warns that consumers are already making use of genomic tests sold directly via the internet, without proper medical advice to put the results into context.

“This is already placing strain on the expertise of doctors, nurses and healthcare scientists who at present are poorly equipped to use genomic tests effectively and to interpret them accurately,” says the report.

Link: House of Lords: science and technology committee: second report of session 2008-09: genomic medicine.