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Producing quality patient information

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Having the right information and support at the right time can help patients to manage and make decisions about their health. Here, we look at The King’s Fund’s archive to explore how guidance on what constitutes good-quality patient information has changed over the years.

A cartoon depicting a man in bed, surrounded by his possesions

The King’s Fund’s first report on producing patient information, Information booklets for patients, was based on a survey carried out by the Fund in 1962. Using best practice examples, the report was a practical guide on how to produce information for people who were about to go into hospital. This illustration was included in a section advising on ‘what to bring’ listing essentials needed for your stay (p.17).

Guide lines: better information literature for hospital patients, published in 1991, is surprisingly similar in content to the original guidance showing how ways of thinking about, creating and delivering information to patients had remained relatively unchanged for more than three decades.

Just five years later, however, the landscape began to change rapidly. The future’s bright: the future’s digital welcomed the ‘information age’. This report aimed to give health professionals a better understanding of new and emerging technologies. It explored how multimedia options, such as the compact disc and the internet, could be used to deliver health information to patients and the public.

While recognising the great potential of these technologies, the report noted that there was already a wide variation in the quality of health information available and warned that the information being produced must meet certain standards.

With these concerns in mind, The King’s Fund became involved in several projects focusing on the production of quality patient information; notably, giving its support to the formation of the Patient Information Forum (PiF) in 1997. At the same time, the Fund was working on a large study assessing the quality of existing patient information material. The first of its kind, this study used focus groups to speak to patients with a range of conditions, as well as to clinicians, to try and establish what ‘good’ information should look like. The findings were published in Informing patients and the results were used to develop better guidance on how to produce quality patient information. Building on this guidance, The (POPPi) guide: practicalities of producing patient information was published in 2000. Broader in scope than preceding publications, it covered the use of multimedia to provide appropriate information packages for a range of audiences.

The growing importance of patient information was also recognised in health policy at this time. NHS England released Information for health, and in 2002 the Wanless report highlighted how access to quality health information through more effective use of technology should be central to improving health care.

In response to these changes in policy and technology, a revised edition of The PoPPi guide, entitled Producing patient information, was published in 2003. This edition is still The King’s Fund’s best-sellling publication to date. In 2012, Patients’ preferences matter explored how failure to fully inform and involve patients in decisions about their care amounts to a ‘silent misdiagnosis’ – providing better information helps patients to make decisions about their health care and choose the option that is best for them.

In 2013, the PiF again highlighted the importance of good-quality patient information. Its publication, Making the case for information, reflected a growing focus on the quality of patient information through accreditation schemes such as the Information Standard and the newly launched Accessible Information Standard, via information prescription schemes, and through the development of NHS Choices. However, despite these schemes, the report revealed that the development, delivery and quality of health information remained patchy.

The Fund’s work continues to look at how the use of technology and data has the potential to better support patients with the information and resources they need to learn more about and manage their conditions. Web-based tools, online patient forums and health apps can support self-care and help to improve overall wellbeing at the touch of a button.

However, these developments in technology are not without challenges. A digital NHS? outlines how the growth in uptake of medical apps is not as widespread as expected and the challenges around finding an accreditation scheme to ensure the efficacy and security of medical apps and the information they hold (p.16). Clearly, the issues of ensuring the quality of patient information are ongoing. How we present information, how we make it available, and how we ensure it reaches its target audience are all issues that we must keep in mind as we continue to explore the use of new technologies to deliver reliable, relevant and useful health information.