Data protection

Earlier in January the Information Commissioner’s Office (ICO) announced that it had taken action against two NHS trusts after the loss of personal data.  In each case, data had been stored in an unencrypted form on easily-removable, and so easy to lose, pieces of hardware.  Whether or not the hardware and the data it contains are recovered, the effects upon those whose information is lost are serious.  Stories like this attract media attention, and in recent times the media has become more alert to this type of story and the damaging effects of data loss on the people affected.  These effects can obviously be worrying where financial or medical data are involved.

Stories of laptops being mislaid or stolen, and the increasing use of USB storage devices as convenient ways to store and transport data, make data governance an increasingly important issue.  As technology advances, new developments in data transfer and storage encourage and enable new applications which would have been unthinkable in the recent past – the NHS National Programme for IT (NPfIT), with plans for sharing health and other related data country-wide, being just one example of such an ambitious system.  However advances that make data more easily available are a double-edged sword, since accompanying the desire to store and distribute information is the need to control who has access to it, and what they can do with it.

One of the most complex parts of designing a large system can be controlling access to the data that it contains.  Most people are familiar with usernames, passwords, PINs and so on, all of which serve to control access to a system, and which are then used by the system to determine what a person can see and do.  In combination with such access controls, the underlying data within a system can be stored in an encrypted form which makes using the data much more difficult even if you can gain access to it through some unauthorised means.

What many (though by no means all) of the data protection stories related in the press have in common is that they concern data being lost OUTSIDE of the system: personal records stored on a USB stick, data downloaded onto a laptop to allow working away from the office, confidential papers left on a train – in these situations the data has already been removed from the system.  Given that access is therefore compromised, it becomes particularly important that such data is protected in some other way – encryption can be used here too.

Encryption is a process by which data is altered through a known process which can be reversed when access to the data is needed.  A secure system will typically use encryption internally to protect sensitive data such as passwords or medical history.  It is possible to encrypt the hard disk drive of a laptop computer, or the contents of a USB memory stick; this would mean that in order to read any data, a password or some similar access control measure would be needed.  Data in an encrypted form is of limited use, and so as long as access to the means of decrypting it is controlled, encrypted data can be considered relatively secure (’relatively’ as it is not impossible to access encrypted data, merely difficult; encryption serves to make unauthorised access to the data infeasibly difficult rather than imposible).

Unfortunately many of the examples of data loss featured in the media become such large stories because data has not been encrypted.  A simple measure, which is accepted as good practice within the industry and promoted strongly by the ICO, but which is not routinely followed.  The recent loss of data from Monster and a variety of losses from government departments serve to emphasise the need for strong access controls, routine encryption of sensitive data, and a greater appreciation of the worth of such data and the dangers involved in its distribution, even within carefully-controlled circumstances.

Putting PCT websites at the heart of healthcare-information services

Anna Mieczakowski with Kevin Holdridge and Dr Gordon Rugg describe the results of an extensive evaluation of primary-care-trust websites.

Abstract

All primary care trusts (PCTs) in England are required to have an online presence that effectively communicates the NHS agenda to the end users. We assessed the websites of all PCTs using well-established research methods and found them to be of poor quality in terms of design, quality of content and effectiveness of communication. We propose the 3C Compliance Model as a solution to the problem with PCT websites.

NHS primary care trusts (PCTs) are responsible for ensuring that the right healthcare services are provided for their communities, ensuring these services can be accessed and for identifying the needs and views of their populations.

Websites are an increasingly important tool for PCTs in reaching constituents and in making healthcare information available to them and soliciting their views. Doing this well requires the PCT website to be well designed and structured so that it effectively communicates diverse corporate, clinical, and community-oriented information.

Beyond some information on NHS branding and style guidelines and some out-of-date UK e-government standards, there is no NHS-specific guidance or framework available to PCTs to help them ensure that their websites are fit for purpose. PCTs struggle, therefore, to specify websites well during procurement and have no easy means of measuring the effectiveness of their existing sites.

We carried-out an evidence-based assessment of 303 PCTs’ websites in England. This identified that most of them failed to comply with good practice and could do a much better job of supporting their organisations’ goals. Many were of poor quality in terms of design, quality of content, effectiveness of communication and were rated poorly by users.

Through our study we developed a robust framework to assess the technical effectiveness, quality of patient experience and content and design appropriateness of PCT websites. Our unique framework incorporates national and international standards for compliance, and is based on sound principles and extensive observation of real users’ behaviour and feedback.

Based on the findings of our study, we suggest practical ways in which PCTs can measure and improve the utility and cost effectiveness of their websites and thus make them key tools for the organisation.

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