UK: Handling Patient Data: Current Data Protection Issues - October 2012

Last Updated: 23 October 2012
Article by Heledd Lloyd-Jones, Mererid McDaid and Mari Williams

The delivery of high quality healthcare relies, to a considerable extent, on the ability to share patient data with relevant clinicians, social care providers and regulators. Patient confidence in healthcare provision is, however, heavily dependent on the ability of providers to hold data securely and to share this information only in accordance with appropriate information governance arrangements and the law.

Enforcement action taken against healthcare providers by the Information Commissioner's Office in recent months, which has included the imposition of fines of up to £325,000, highlights the importance for NHS bodies of ensuring that arrangements for the handling of patient data are at all times well informed, robust and appropriate.

Patient data is "sensitive personal data" for the purposes of the 1998 Data Protection Act. As such, patient data is subject to a particular set of controls to guard against inappropriate disclosure and unfair use. Because of the inherent sensitivity of patient data, otherwise simple administrative errors can have serious consequences for affected patients and tend to attract critical scrutiny from both the ICO and the press.

In the healthcare context, (and with certain limited exceptions) patient data should be used only:

  • with specific consent; or
  • to protect a person's vital interests in circumstances where it is not possible to obtain consent; or
  • where necessary for the purpose of legal proceedings or for obtaining legal advice; or
  • where necessary for the purpose of exercising statutory (or similar functions); or
  • for medical purposes by or on behalf of a medical practitioner (or someone owing an equivalent duty of confidentiality.

In addition patient data is subject to the DPA's general obligations which include the requirement to inform individuals about any proposed use of their data which would not otherwise be obvious to them and the requirement to have in place appropriate and proportionate data security safeguards.

Data sharing

Data sharing between organisations can play a crucial role in providing enhanced and more efficient service to patients. However a recent case involving the Bournemouth and Poole NHS Trust illustrates the pitfalls that can arise when patient data is shared without sufficient regard to data protection principles.

The Trust was the subject of a complaint to the ICO after it passed patient information to a company that it had commissioned to carry out NHS health checks without patient consent. Contact details of 3,700 patients identified as likely to benefit from cardiovascular health checks were passed to Enhanced Healthcare Services. The company then contacted patients on behalf of the Trust to invite them to attend for screening.

The ICO found that the processing of patients' data was not fair; individuals should have been informed by the Trust that they would be receiving a call inviting them to attend a risk assessment, and should have been give the opportunity to opt out of receiving such calls. The Trust appears initially to have decided against this approach for reasons of cost and expediency. Significantly, in deciding against taking formal enforcement action, the ICO appears to have taken particular account of the fact that the Trust's information governance arrangements were generally good and that the Trust had acted promptly to reassure patients when complaints were first raised.

Healthcare bodies considering initiatives that will involve data sharing should have regard to Caldicott Guildelines and to the principles set out in the ICO's statutory code of practice on information sharing which includes the following recommendations:

  • Before deciding to share data, consider the potential benefits and risks of sharing the data and the likely result of not sharing the data to establish whether the benefits outweigh the risks; use privacy impact assessment to understand the privacy risks.
  • Be clear about whether there is a legal power to share the data.
  • Inform individuals that personal data about them has been, or is going to be shared and what it will be used for.
  • Consider the use of data sharing agreements, setting out a common set of rules to be adopted by organisations involved in data sharing.
  • When data is sent to a contractor to be processed on an organisations behalf ensure that a written agreement is in place requiring the contractor to use the data only in accordance with instructions.

Data Sharing Agreements and Data Accuracy

The value of using data sharing agreements, when sharing patient data with partner organisations (rather than with contractors) is well illustrated by a recent case involving Central London Community Healthcare NHS Trust which was fined £90,000 in May 2012 after referral information relating to hospice patients was faxed from the Trust's palliative care unit to an incorrect fax number on 45 occasions. The error, which went undetected for a number of weeks compromised the privacy of 50 patients. Although a data sharing protocol was in place in relation to data transfers between the Trust and the hospice, its effect was undermined when an additional (and incorrect) fax number was added to the protocol without verification. The error went undiscovered because referrals continued to be received by the hospice via the originally designated fax machine.

The importance of checking the accuracy of contact details when transmitting patient data is further illustrated in a series of other cases that resulted in fines for NHS bodies. For example, St George's Healthcare NHS Trust was fined £60,000 in July 2012 after a vulnerable patient's sensitive medical information was sent to the patient's former address, even though the patient had not lived in the property for nearly five years. The patient's correct address had been supplied to the Trust and had been logged on NHS SPINE, the national care records service but Trust staff had failed to use the more recently supplied address or check that the individual's recorded address on their local patient database matched the data on the SPINE. The Trust had setup a prompt to remind staff about the need to check and update patient information against SPINE; however the Trust knew the prompt could be bypassed and failed to take action to address the problem until it was too late.

In a similar case involing the Aneurin Bevan Local Health Board, a monetary penalty of £70,000 was imposed by the Information Commissioner's Office after a sensitive report containing explicit details relating to a patient's health was sent in error to a former patient who has a surname that was virtually identical to the name of the patient to whom the report related. Failure to use unique patient identifiers when selecting contact details for the purpose of corresponding with patients fell short of the standards required by the DPA.

Data Security

To date, the highest fines issued by the ICO against healthcare organisations relate to more traditional data security breaches, including failures to have adequate arrangements in place for the physical security of patient records and failure to make appropriate arrangements for the secure disposal of confidential patient data.

In June 2012 the Belfast Health and Social Care Trust was fined £225,000 after trespassers accessed paper records stored in premises that had been empty since 1992 and uploaded images to the internet. The records that were accessed by the trespassers included sensitive personal data of thousands of patients and staff, and included medical records, x-rays, scans, lab results and staff records including unopened payslips. The ICO found that many of the records ought to have been disposed off rather than stored and that arrangements for the physical security of records that needed to be retained were inadequate. The case was aggravated by the Trust's failure to refer the matter to the ICO when the breach came to light.

Finally, the highest fine imposed by the ICO to date concerns failings on the part of Brighton and Sussex University Hospitals NHS Trust which were associated with the Trust's disposal of computer hard drives containing highly sensitive patient data. This case which resulted in a fine of £325,000, highlights the particular importance for all health bodies of ensuring that appropriate contractual provisions are agreed wherever the handling of personal data is outsourced.

The fine was imposed following the discovery, on hard drives sold on an internet auction site, of highly sensitive personal data belonging to tens of thousands of patients and staff, including some relating to recipients of genito-urinary and HIV services. The Trust had relied on the Sussex Health Informatics Service to dispose of the hard drives but the relevant service level agreement between the Trust and the Informatics service had expired. Sussex Health Informatics had then subcontracted the work but had not exercised proper supervision over the contractor. Although it appears that all relevant hard drives were recovered, the Trust was held to have breached the DPA because of its failure to ensure the project was properly managed, having regard to the sensitivity of the data concerned.


Fines imposed on health bodies to date reflect the seriousness with which failures to handle patient data securely are viewed by the ICO. In order to minimise the risk of data security breaches and of costly regulatory action health bodies should pay careful attention to the following best practice recommendations:

  • Adopt and adhere to an Information Security Policy.
  • Assign responsibility for information security to a senior staff member.
  • Control, monitor and audit the use of mobile computing systems.
  • Minimise the transmission and transport of sensitive personal.
  • Where transmission or transport of sensitive data is essential, use appropriate encryption and, where relevant, secure e-mail.
  • Adopt document incident management and reporting procedures.
  • Train all staff on information security.
  • Ensure that all contractors dealing with personal data on an organisation's behalf have appropriate data security measures in place and ensure details of the same are included in contracts.

Recent cases demonstrate that breaches of the DPA can have significant effects on healthcare organisations in terms of cost, reputational damage and lack of trust from patients. Ensuring that appropriate safeguards are in place to ensure that arrangements for data sharing are legitimate and that suitable data security precautions are in place should therefore be a priority for all organisations with responsibility for patient data.

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

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