Described by the NHS in 2013 as an initiative that “will bring together health and social care information from different settings in order to see what’s working really well in the NHS and what could be done better”, the ‘care.data’ programme sounded like a genuinely positive, innovative approach for a healthcare service now under intense financial scrutiny.
The decision to leverage the extensive amount of data available to healthcare professions would not only benefit staff, but help patients access a centralised database of their own records instead of the traditionally disparate data that currently constitutes all areas of the health service.
Instead, the care.data programme has been scrapped. The NHS will not be taking advantage of an opportunity to increase efficiency across the entire organisation and recent findings point to a government that is not willing to invest in the long-term operation of the service, with research uncovering how the NHS has continued to be consciously underfunded, with the spending not meeting the requirements of the Five Year Forward View.
So what is next for the NHS?
Theresa May’s cabinet shake-up saw Jeremy Hunt survive as the Health Secretary, a move which would be considered good for continuity if he had decided to fight alongside the junior doctors rather than against them. For the NHS moving forward, this can be seen as a call for more of the same – it is unlikely that a new, transparent system will ever materialise without the proper funding.
There is no doubt that efficiencies must be made, but the fact remains that the care.data programme was not as black and white as it first seemed, with many experts and healthcare professionals having well-founded doubt over certain aspects of a service that must be reviewed to avoid the same mistakes in the future.
It is not just the public that were concerned, with the chairwoman of Healthwatch Cornwall, Jayne Howard claiming that “Research is the backbone of our work so we fully understand the importance of information gathering, but people need to understand fully what they are agreeing to and how information will be used”, raising valid questions on the use of personal, public data.
This concern is of great importance when considering the 2012 Health and Social Care Act that legalised all data sharing without the consent of a patient. For some, the care.data programme was a step too far with around 80% of respondents to a survey expressing their determination to opt out of the programme.
The major concern was of data privacy, with individuals worried about who would be able to access the data and if personal information would be sold to third-parties. Even after the announcement, it was found that the Department of Health was slow to shut down care.data altogether, with data still available externally.
The shortcomings of the programme must be addressed and fears put to rest if there is ever to be another iteration. Transparency to the general public and healthcare professionals is of paramount importance to ensure the same issues do not recur.
The story of care.data will be one that will not be looked upon lightly and will remain a case of ‘what might have been’. With a culture of data driven decisions being adopted through self-service analytics in the business sector to provide operational efficiency, the NHS will remain an organisation in need of efficiency savings. The data will have to be utilised eventually for the NHS to make cost savings, but 2016 will not be the year it is put into effect.