Some times people get it just right don’t they. Today in parliament select committee one of the potentially biggest abuses of our personal rights and our personal data, some of the most sensitive information about ourselves was discussed fully and frankly and the NHS in England and the HSCIC were found wanting. I have never seen so many witnesses lined up with consistent real concerns so clearly presented to a committee, not a committee so engaged and insightful on a major issue only to find those whose job it is to protect, support and manage this asset of us as individuals to be found wanting
Let us hope that we will see a radical policy shift that places personal control over personal data in the hands of the individual regardless of the education programme needed to get people to participate. This will be better for individuals, better for the NHS and better for research and better for the economy. As Chris Graham the Information Commissioner says we have got to stop brushing the offer under the carpet and let people know what is going on and what there will be used for an let them decide in an informed consent model based on digital consent being granted and not keep us consigned to the paper world whilst the data is harvested at the speed of light from GP’s into the mother of all Big Data warehouses and made available to people unknown for unknown purposes.
By the way
I want to support research that will help the world
I want to be able to share my health records or bits of them that need them
I just do not want it done to me without my consent or active participation.
I want improved outcomes for the nations health and yes £93bn of public money funds the health services in the UK each year, if we can dramatically reduce the cost of delivery and improve the quality of diagnosis, prescribing, improve the quality of care and streamline processes I am up for it, but I want to be involved and I do not want it funded by some secret sponsorship deal or some cost offset deal created by the drug and life and pension and health insurance companies and the digital data barons at Google, Apple, Facebook etc in return for some claimed boost to UK plc coffers around inward investment.
We can do better surely