NHS medical data – a ‘wealth’ of information in every sense.

This summer I was urgently admitted to hospital for high dose intravenous antibiotics to stop an ear infection that was fast tracking through my inner ear towards my brain. A close friend of mine is soon due to start chemotherapy to treat colon cancer. We all have similar tales to tell of loved ones saved by drugs.

These drugs have been produced by pharmaceutical manufacturers. They have been tested, manufactured, gone through quality assurance, packaging, monitoring, marketing and everything else associated with a new product for human consumption. An expensive business. The research needed to initiate or validate any healthcare innovation is as costly as it is vital. Equally vital are retrospective studies of data covering demographic, lifestyle, hereditary and aetiological factors associated with disease and treatment.  

The NHS is absolutely unique in holding generations of patient data - a potential academic and financial goldmine.

Extracting data from within the NHS is a political, logistical and, at times, emotional nightmare. I can vouch for this first hand. Working on stroke improvement projects for NHS London last year, patient flow information, survival rates and treatment records were crucial in establishing whether the new treatment pathway was benefitting patients. My project team (all employed by or contracted to the NHS) did everything humanly possible to facilitate the collection of anonymised, accurate and relevant patient data. The protection of patient identity was an absolute doddle compared to the delicate task of persuading busy clinicians and technicians to input treatment details and admission statistics. There was, at least in this case, a compelling incentive to complete this data collection as the only way a hospital trust could receive the elevated tariff associated with high standards of  care was to record the attainment of these standards. Even with the net gain of additional income for a unit, data collection represents a constant burden on staff.

I applaud David Cameron’s suggestion that medical data should be sold to research, life science and pharmaceutical organisations. I don’t have concerns about patient confidentiality as any private (or public for that matter) research organisation has protection of patient identity ingrained in every single data analysis policy and clinical trial protocol.

I don’t agree with the spokesperson from Patient Concern who says the ‘methods stink’ suggesting that patient records should ‘not be passed around by the Department of Health or sold to private companies without our permission’. This statement suggests that the fundamental aim of using medical data is misunderstood.

I am heartened by the good sense of Neil Patel from the Royal Pharmaceutical Society who stated ‘we need people to understand that the benefits for all of us – our children and people who have illnesses – are absolutely essential when it comes to using health records for research’ (sensible people – pharmacists)

Apart from the medical benefits of research, the pharmaceutical and life science industries are significant wealth contributors to the UK, employing an estimated 250,00 people and exporting in excess of £20 billion annually.

I hope that the NHS can find a way to enable the use of anonymous clinical data to earn additional income and drive forward medical research. But in order for this to work, may I suggest that whoever ‘does the deal’ includes the sponsorship, payment, or facilitation of additional manpower, funded privately, to collect and encrypt the data. Then patient care will not be compromised, staff will not be additionally stretched and the right data can reach the right people in the right format at the right price.