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.

What to take to hospital

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

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.

The POPPi Guide

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.

Producing patient information

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.

Comments

Malcolm Rigler

Position
NHS GP,
Organisation
Partners in Health ( Midland ) Ltd.
Comment date
01 December 2016
As Town Councils begin to become involved in Health and Well-being new High Street venues may well become the "Hubs of Learning and Centres of Imagination" that are so much needed see : www.librariesandhealth.com

Adam

Position
Librarian (NHS),
Organisation
Whittington Health
Comment date
02 December 2016
Really interesting piece, this. I'd never considered the history of Information for Patients. Thanks.

Brendan Beaton

Position
Clinical Research Fellow,
Organisation
Royal Free NHS Foundation Trust
Comment date
03 December 2016
Thank you. This in indeed an important area for quality control of information in this digital age with more and more people trying to condense what is complex information into smaller and smaller bites. It's also hugely important in the context of clinical trials where the development of patient information is crucial.

Claire Murray

Position
Joint Head of Operations,
Organisation
Patient Information Forum
Comment date
07 December 2016
Really interesting blog and perspective on how patient information has developed - thanks!

The Patient Information Forum (PIF) celebrates 20 years next year, and we are still working to promote the importance and understanding of good quality health information, including our best practice principles for creating health information that works: www.pifonline.org.uk/toolkit/

Mark Duman

Position
NEXD,
Organisation
Patient Information Forum
Comment date
07 December 2016
Thanks to Sarah Greening for bringing this to my attention today at our PiF Executive Circle meeting - as the author of the latter publications, it nearly brings tears to my eyes!
We've focused on Production (cf. Information Standard) to the detriment of delivery. All health & social care professional should regard information & support as a 'therapy' - not providing it is sub-optimal, if not negligent care - see https://mdujournal.themdu.com/issue-archive/issue-4/informed-consent-a-year-on-from-montgomery
'An adult person of sound mind is entitled to decide which, if any, of the available forms of treatment to undergo, and her consent must be obtained before treatment interfering with her bodily integrity is undertaken.

'The doctor is therefore under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments.

'The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient's position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.'

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