This week David Cameron set out plans to open up NHS data, by making the sharing of NHS patient data for research the default position within the NHS. This initiative will save lives.
The focus of the media has been on the ability of the pharmaceutical industry to exploit the data for profit, and with modern day cynicism about the industry & concern about current NHS reforms it isn’t surprising to see this painted as an attempt to “privatize” the NHS. Others are concerned about the confidentiality of the data, in part fed by the same campaigners who opposed the now scrapped ID card.
There is already evidence to reassure us that concerns about confidentiality are overblown. The pharmaceutical industry has been using NHS data for years. The General Practice Research Database (GPRD) provides GP practice data for epidemiological studies to industry, and holds over 5.2 million patient records. The GPRD has existed since 1987, and abides by the confidentiality rules of the BMA, GMC and the Royal College of General Practitioners.
Another example would be the Yellow Card scheme. That scheme has existed since 1964, and accepts anonymised reports of adverse drug reactions (ADRs) without the need for patient consent. It has more than half a million reports, and its operation has led to the identification of many ADRs, reducing the burden of drug-induced morbidity and mortality. The UK Association of Cancer Registries has been collecting data for over 40 years, providing essential information on cancer incidence and survival rates.
In all three of these examples, there is no evidence that patient confidentiality has been compromised, but plenty of evidence of a public health benefit for the wider population. The first two schemes are managed by the drugs regulator, MHRA and it appears that the new patient data scheme will also be run as a partnership between the MHRA and the National Institute of Health Research, both well respected organisations who will control access to the data via the ethical standards that already apply to existing NHS datasets.
The NHS provision of free care to all from taxation is rightly beloved by the population. As part of our social contract with the NHS, the willing gift of our anonymous data to help improve the care of future patients is a price worth paying. If a few of us opt out of that dataset we should recognise a relatively small losses of data may endanger the ability of researchers find the answers we need.
It should be remembered that NHS patients are major users of the drugs produced by the pharmaceutical industry. Often regulators ask pharmaceutical companies to investigate the safety of drugs using real world data. It is nonsensical to both demand safer drugs from the industry, and at the same time deny them access to the best dataset we may have to monitor such safety.
Set the data free.