A rapid synopsis of the Caldicott 2013 information review

Midwives seeking to do research that requires accessto social, treatment, GP, diagnostic and birth outcomedata using health and social services ICT systems willwelcome the recommendations and principles set out inthe recent Caldicott review (DH, 2013). There is a clearacknowledgment of the value of research to the NHS andpublic and the need to find robust ways of sharing socialcare data and medical data to support better research. Thereview is published one year after the NHS in Englandpublished its 10-year strategy, entitled: The power ofinformation: putting us all in control of the health and careinformation we need (DH, 2012). The overall aim of thestrategy is to ‘use information and technology to improvehealth, care and support – to improve the patient experienceand quality of care by putting people first’.It is important to note, the review comes shortly afterthe Administrative Data Taskforce published its reportand recommendations in December 2012 (ADTF, 2012)for linking data between government departments acrossthe four UK countries. Among their recommendationsfor a single UK data research network include a call forlegislation to enact and facilitate research access to admindata and to permit linkage between departments, a singleUK-wide researcher accreditation process, a strategy forpublic engagement and allocation of appropriate funds.Several of these proposals appear to be incorporatedinto the Caldicott review, including a proposed model forinformation sharing, more consistency and clarity aroundinformation research governance, the establishment of safehavens, the addition of a seventh principle to the Caldicottsix principles set out in 1997, patient consent and ethicaland legal practices.The review states that linkage between data sets for goodreasons and in line with the Caldicott principles, access todata will be supported as part of a robust approach to makinginformation for research purposes more available within asecure environment (DH, 2013). This access will increasethe potential for researchers to undertake population-basedobservational research studies as data linkage is essential.The review also offers new hope for researchers who wishto conduct studies without facing complex informationgovernance review systems and processes that lackconsistency and clarity of interpretation. Clear instructionsabout access to different types of NHS information areprovided: data that identifies individuals and can onlybe collated with a clear legal foundation; data that isanonymised using the ICO’s anonymisation code and canbe accessed and published freely.However, there is reference to the problematic categoryof data known as the ‘grey area’ where data that has beencoded or given pseudonyms for data protection can belinked to other data and in doing so can become identifiable.For midwives doing research using maternity care recordsand seeking to link data on GP databases, prescriptiondatabases and diabetic database, for example, and seekingoutcomes for known groups, these issues have indeedbeen problematic. The good news is that Dame Caldicottrecommends the establishment of ‘accredited safe havens’where data can be accessed in ‘specialist, well-governed,independently scrutinised environments’. This informationcentre will be provided under the Health and Social Care Act(2012) and guidance on consent to use personal confidentialdata that can legally be shared has become the remit of theInformation Commissioning Group.It was refreshing to note the panel had received informationabout what could be done to improve public awareness ofthe benefits of research, what it involves and the way inwhich health and social data are used to provide meaningfulinterpretations of risk factors and health outcomes.Recommendation seven of the review states: ‘Allorganisations in the health and social care system shouldclearly explain to patients and the public how the personalinformation they collect could be used in de-identifiedform for research, audit public health and other purposes.All organisations must also make clear what rights theindividual has open to them including any ability to activelydissent.’ The government is clearly working to integrateinformation systems to enable data integration, dataaccess, data sharing and data safety. The establishment ofthe Health and Social Care Information Centre, where allNHS, public health and social care information in Englandwill be kept, will become a major centre for research andwill attract global interest.It is important for the voice of midwife researchers andprofessional representatives to be at the government tablewhen action plans for the online or cloud-based informationcentre and ‘safe havens’ are being drawn up.