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.

Conclusion

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.

To print this article, all you need is to be registered on Mondaq.com.

Click to Login as an existing user or Register so you can print this article.

Authors
 
In association with
Related Video
Up-coming Events Search
Tools
Print
Font Size:
Translation
Channels
Mondaq on Twitter
 
Register for Access and our Free Biweekly Alert for
This service is completely free. Access 250,000 archived articles from 100+ countries and get a personalised email twice a week covering developments (and yes, our lawyers like to think you’ve read our Disclaimer).
 
Email Address
Company Name
Password
Confirm Password
Position
Mondaq Topics -- Select your Interests
 Accounting
 Anti-trust
 Commercial
 Compliance
 Consumer
 Criminal
 Employment
 Energy
 Environment
 Family
 Finance
 Government
 Healthcare
 Immigration
 Insolvency
 Insurance
 International
 IP
 Law Performance
 Law Practice
 Litigation
 Media & IT
 Privacy
 Real Estate
 Strategy
 Tax
 Technology
 Transport
 Wealth Mgt
Regions
Africa
Asia
Asia Pacific
Australasia
Canada
Caribbean
Europe
European Union
Latin America
Middle East
U.K.
United States
Worldwide Updates
Check to state you have read and
agree to our Terms and Conditions

Terms & Conditions and Privacy Statement

Mondaq.com (the Website) is owned and managed by Mondaq Ltd and as a user you are granted a non-exclusive, revocable license to access the Website under its terms and conditions of use. Your use of the Website constitutes your agreement to the following terms and conditions of use. Mondaq Ltd may terminate your use of the Website if you are in breach of these terms and conditions or if Mondaq Ltd decides to terminate your license of use for whatever reason.

Use of www.mondaq.com

You may use the Website but are required to register as a user if you wish to read the full text of the content and articles available (the Content). You may not modify, publish, transmit, transfer or sell, reproduce, create derivative works from, distribute, perform, link, display, or in any way exploit any of the Content, in whole or in part, except as expressly permitted in these terms & conditions or with the prior written consent of Mondaq Ltd. You may not use electronic or other means to extract details or information about Mondaq.com’s content, users or contributors in order to offer them any services or products which compete directly or indirectly with Mondaq Ltd’s services and products.

Disclaimer

Mondaq Ltd and/or its respective suppliers make no representations about the suitability of the information contained in the documents and related graphics published on this server for any purpose. All such documents and related graphics are provided "as is" without warranty of any kind. Mondaq Ltd and/or its respective suppliers hereby disclaim all warranties and conditions with regard to this information, including all implied warranties and conditions of merchantability, fitness for a particular purpose, title and non-infringement. In no event shall Mondaq Ltd and/or its respective suppliers be liable for any special, indirect or consequential damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action, arising out of or in connection with the use or performance of information available from this server.

The documents and related graphics published on this server could include technical inaccuracies or typographical errors. Changes are periodically added to the information herein. Mondaq Ltd and/or its respective suppliers may make improvements and/or changes in the product(s) and/or the program(s) described herein at any time.

Registration

Mondaq Ltd requires you to register and provide information that personally identifies you, including what sort of information you are interested in, for three primary purposes:

  • To allow you to personalize the Mondaq websites you are visiting.
  • To enable features such as password reminder, newsletter alerts, email a colleague, and linking from Mondaq (and its affiliate sites) to your website.
  • To produce demographic feedback for our information providers who provide information free for your use.

Mondaq (and its affiliate sites) do not sell or provide your details to third parties other than information providers. The reason we provide our information providers with this information is so that they can measure the response their articles are receiving and provide you with information about their products and services.

If you do not want us to provide your name and email address you may opt out by clicking here .

If you do not wish to receive any future announcements of products and services offered by Mondaq by clicking here .

Information Collection and Use

We require site users to register with Mondaq (and its affiliate sites) to view the free information on the site. We also collect information from our users at several different points on the websites: this is so that we can customise the sites according to individual usage, provide 'session-aware' functionality, and ensure that content is acquired and developed appropriately. This gives us an overall picture of our user profiles, which in turn shows to our Editorial Contributors the type of person they are reaching by posting articles on Mondaq (and its affiliate sites) – meaning more free content for registered users.

We are only able to provide the material on the Mondaq (and its affiliate sites) site free to site visitors because we can pass on information about the pages that users are viewing and the personal information users provide to us (e.g. email addresses) to reputable contributing firms such as law firms who author those pages. We do not sell or rent information to anyone else other than the authors of those pages, who may change from time to time. Should you wish us not to disclose your details to any of these parties, please tick the box above or tick the box marked "Opt out of Registration Information Disclosure" on the Your Profile page. We and our author organisations may only contact you via email or other means if you allow us to do so. Users can opt out of contact when they register on the site, or send an email to unsubscribe@mondaq.com with “no disclosure” in the subject heading

Mondaq News Alerts

In order to receive Mondaq News Alerts, users have to complete a separate registration form. This is a personalised service where users choose regions and topics of interest and we send it only to those users who have requested it. Users can stop receiving these Alerts by going to the Mondaq News Alerts page and deselecting all interest areas. In the same way users can amend their personal preferences to add or remove subject areas.

Cookies

A cookie is a small text file written to a user’s hard drive that contains an identifying user number. The cookies do not contain any personal information about users. We use the cookie so users do not have to log in every time they use the service and the cookie will automatically expire if you do not visit the Mondaq website (or its affiliate sites) for 12 months. We also use the cookie to personalise a user's experience of the site (for example to show information specific to a user's region). As the Mondaq sites are fully personalised and cookies are essential to its core technology the site will function unpredictably with browsers that do not support cookies - or where cookies are disabled (in these circumstances we advise you to attempt to locate the information you require elsewhere on the web). However if you are concerned about the presence of a Mondaq cookie on your machine you can also choose to expire the cookie immediately (remove it) by selecting the 'Log Off' menu option as the last thing you do when you use the site.

Some of our business partners may use cookies on our site (for example, advertisers). However, we have no access to or control over these cookies and we are not aware of any at present that do so.

Log Files

We use IP addresses to analyse trends, administer the site, track movement, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information.

Links

This web site contains links to other sites. Please be aware that Mondaq (or its affiliate sites) are not responsible for the privacy practices of such other sites. We encourage our users to be aware when they leave our site and to read the privacy statements of these third party sites. This privacy statement applies solely to information collected by this Web site.

Surveys & Contests

From time-to-time our site requests information from users via surveys or contests. Participation in these surveys or contests is completely voluntary and the user therefore has a choice whether or not to disclose any information requested. Information requested may include contact information (such as name and delivery address), and demographic information (such as postcode, age level). Contact information will be used to notify the winners and award prizes. Survey information will be used for purposes of monitoring or improving the functionality of the site.

Mail-A-Friend

If a user elects to use our referral service for informing a friend about our site, we ask them for the friend’s name and email address. Mondaq stores this information and may contact the friend to invite them to register with Mondaq, but they will not be contacted more than once. The friend may contact Mondaq to request the removal of this information from our database.

Security

This website takes every reasonable precaution to protect our users’ information. When users submit sensitive information via the website, your information is protected using firewalls and other security technology. If you have any questions about the security at our website, you can send an email to webmaster@mondaq.com.

Correcting/Updating Personal Information

If a user’s personally identifiable information changes (such as postcode), or if a user no longer desires our service, we will endeavour to provide a way to correct, update or remove that user’s personal data provided to us. This can usually be done at the “Your Profile” page or by sending an email to EditorialAdvisor@mondaq.com.

Notification of Changes

If we decide to change our Terms & Conditions or Privacy Policy, we will post those changes on our site so our users are always aware of what information we collect, how we use it, and under what circumstances, if any, we disclose it. If at any point we decide to use personally identifiable information in a manner different from that stated at the time it was collected, we will notify users by way of an email. Users will have a choice as to whether or not we use their information in this different manner. We will use information in accordance with the privacy policy under which the information was collected.

How to contact Mondaq

You can contact us with comments or queries at enquiries@mondaq.com.

If for some reason you believe Mondaq Ltd. has not adhered to these principles, please notify us by e-mail at problems@mondaq.com and we will use commercially reasonable efforts to determine and correct the problem promptly.