The following post was written by Informed team member, Elly O’Brien.
NHS England’s new database, Care.data, will be populated with data collected by the Health and Social Care Information Centre (HSCIC) from different care providers such as General Practitioners (GPs). The HSCIC already collects Hospital Episode Statistics, which details admissions, outpatient appointments and accident and emergency department attendances. The concept behind care.data is to create a single database with information spanning primary care (e.g. GP surgeries) and secondary care (e.g. hospital admissions), to enable this “big data” to be used to help understand and treat diseases, inform how local services are organised, identify people at risk of conditions and improve the “pathway” of treatment a patient follows.
We are frequently told that we are living in an age of “information overload”, where we are bombarded with information which can lead to an “information paradox” in which there are so many sources of information, that knowledge becomes hard to find and this superfluity of information can make it harder to reach a decision. Care.data is a perfect example of this in action, having created a flurry of media coverage and commentary from all sides.
The aim of this blog post is not to add to this excess of information or to try to sway anyone’s opinion, but to signpost sources of information from various organisations and viewpoints.
The HSCIC has background information on care.data, NHS England has a range of information specifically for health professionals. NHS Choices has information tailored for patients including an electronic copy of the leaflet that has been distributed to all households in England and a video.
So what are some of the issues that have been raised about care.data?
NHS England has stated that the records will have identifiable information removed but the HSCIC has conceded that there is a small risk that records would be potentially identifiable as records will be pseudonymised rather than anonymised.
How the data will be used
The data will be used within the NHS nationally to inform research and improve practice, as well as by the NHS locally to understand local needs and for the NHS to commission services accordingly. It will also be made available (for a fee) to insurance firms and private organisations such as pharmaceutical companies. Some people are fundamentally opposed to this, but NHS England has sought to reassure patients that the data will not affect insurance premiums or be used for marketing purposes. NHS England has in place information governance measures designed to ensure that it complies with relevant legislation with regards to how care.data will be shared, stored and used. The same laws will apply to any non-NHS organisations using care.data, however, some critics have are concerned that any misuse of data would only be apparent after the fact and that law in itself is not necessarily a deterrent.
Having to opt-out
The new database is based on an opt-out system and patients who do not want their data included in the database are instructed to contact their GP in the leaflet being posted out. This has been criticised on principle by some, because people may not opt-out (perhaps due to laziness or lack of awareness) but in doing so are not necessarily positively consenting. Others have criticised that an opt-out form has not been provided, although some GP surgeries have created opt-out forms for patients on their websites (such as this Durham-based practice). To opt out you simply need to contact your GP surgery (not your actual GP), you can phone them or write to them (medConfidential has an opt-out form you can print out and send to your GP surgery).
The decision is yours to make, but a little reading can ensure that it is an informed, empowered decision rather than an unwitting opt-in.