It’s Time To Stop Data Protection Being Cited As An Obstacle To Doing Good
14 December 2011
1 December 2003
27 July 2009
26 January 2004
8 April 2013
16 December 2003
· Parents can’t take photos of their children in school plays or at sports days.
· Companies can’t supply any data about people to third parties.
· Places of worship can’t name ill members of their community during prayers.
· A postman can’t deliver mail because it needs to be signed by the recipient: a tiny baby.
· Most tragically, a utility company can’t contact social services about a vulnerable elderly couple whose gas was cut off, and who later died in their unheated home.
These are just some of the myths associated with the Data Protection Act. It is about time people stopped wrongly using the Act to blame things and as an excuse.
In 2009, the Deputy Information Commissioner said: “The Data Protection Act does not impose a blanket ban on the release of personal information. What it does do is require a common sense approach. It should not be used as an excuse by those reluctant to take a balanced decision. The Act plays a very important role in protecting all our personal information and gives us all important rights.” Absolutely right.
So it was with dismay that I read that data protection was once again cited as a reason not to do something.
The pharmaceutical and life sciences sector has been facing a massive upheaval with the impending “patent cliff”. This refers to the falling out of patent protection for big pharma companies of a series of blockbuster drugs without there being sufficient new lucrative patented replacement drugs in their place.
There are massive and ever-increasing costs of bringing new drugs to market, as they undergo rigorous rounds of clinical testing, whilst many fall by the wayside en route. The whole industry of innovation to research and develop new drugs by big pharma companies, paid for out of their profits from lucrative sales of blockbuster patented drugs, is facing decline. Earlier this year, Pfizer closed its research premises that had employed over 2,000 people in Kent. There are concerns that the lack of funding from big pharma companies could see fewer new drugs available to advance the treatment of patients.
Against that backdrop, it was encouraging to see a Government announcement to try something different to stimulate new drug development. With some out of the box thinking, David Cameron has announced an initiative that would see the NHS working “hand-in-glove with industry”.
The plan would see NHS patients as being a source of valuable data to enable private companies to innovate, so that patients could receive innovative treatment faster. Every patient would become a “research patient”. The Government emphasised that all necessary safeguards would be put in place to ensure the protection of patients’ details so that the data would be anonymised and the process would be carefully and robustly regulated.
However, virtually as soon as the statement became public, there came the inevitable objections from people citing data protection as a reason to stop it. Big Brother Watch has said it should be for patients to decide what happens with their medical information rather than governments. Patient Concern went further and declared that the initiative was the “death of patient confidentiality”.
Once again, it is disconcerting to see data protection being used as an excuse to act as a problem, rather than it being applied in a common sense way so that a solution is found. No one doubts that patient confidentiality is important. But as long as there are sufficient safeguards to protect the anonymity of data, surely finding ways of enabling and speeding up the creation and administration of drugs that can save real people’s lives or make them more comfortable is a far bigger objective worth fighting for.
And if, in the process, the medicine for the NHS also has the side effect of not only protecting an industry employing 160,000 people with a turnover of £50bn a year, but it also helps in these troubled economic times to achieve what ministers wish to see as Britain becoming a world leader in the field of life sciences, is the greater good not worth fighting for?
Data protection has a valid place in the protection of people’s privacy rights, but why is it again being used as grounds to stop society doing something, rather than everyone concentrating on finding a way to achieve the obvious great benefits?
Paul Gershlick, head of pharmaceutical and life sciences sector, Matthew Arnold & Baldwin