21 February 2014
The UK Council for Health Informatics Professions, (UKCHIP), BCS, The Chartered Institute for IT, and the Institute of Health Records and Information Management (IHRIM), the leading organisations representing the health informatics professions across the United Kingdom, are concerned jointly about the implementation of the Care.Data project in England and the perceptions about the project currently being raised in the media amongst the population.
We are delighted that the process of consultation has now been extended, but strongly recommend that the consultation achieves comprehensive coverage to enable comprehensive understanding by the public.
We recommend that the consultation should address whether:
On the original timetable, it was debatable whether a full understanding and acceptance of the project aims and benefits could be achieved. There are serious gaps in awareness which are being filled by rumour and it would be very unfortunate if the undoubted benefits of sensitive data-sharing were put at risk by rushed and inefficient communications.
We support fully the Royal College of General Practitioners in their call for a renewed national push to ensure that patients and GPs are fully informed, in clear terms, about the benefits of the scheme and what their rights are, including the right to opt-out1.
The extended consultation needs widespread coverage to obtain an extensive understanding of the reasons for the current concerns, in order to inform a full public information and assurance programme for the population affected by the Care.Data project, including those disadvantaged because of sensory impairment or mental illness, prison populations, those in care and those without digital access.
We further recommend jointly that the launch of Care.Data is delayed until this process is completed
The implementation of the Care.Data project will be complex, particularly when there appear to be conflicting interests and perceived anomalies surrounding information use. For example there are potentially competing imperatives to use data for research and service commissioning but at the same time to ensure data are used ethically and legally by protecting confidentiality, meeting the legal requirements of the Health and Social Care Act 2012 (HSCA); and complying with the Data Protection Act 1998 (DPA).
The DPA refers specifically to fair processing of data, which requires transparency - being clear and open with individuals about how their information will be used, whilst the HSCA ruled that personal identifiable data could be extracted from GP records without patients being properly informed about specific data uses. The Secretary of State later advised that patients would have the right to opt out and NHS England has said it is committed to ensuring that members of the public are aware of the benefits of the Care.Data initiative and their rights to opt-out.
The implementation of Care.Data will rely heavily on persons and organisations engaged in the practice of health and social care informatics, whose duty it is to work according to professional standards and an ethical code of conduct, and above all to ensure the safety of patients, clients and the public. Individuals who are registered with UKCHIP or who are members of BCS or of IHRIM, will have already confirmed their professionalism, knowledge and competence and will be best placed to support the eventual roll-out of the Care.Data project.