To support the creation and provision of high-quality and accessible health information, PIF has produced a range of publications. They cover key topics in health information and support, and are free to download.
Guides and Reports
A 7-step process for health services to develop a Perfect Patient Information Journey (June 2018)
In June 2018, the Patient Information Forum (PIF) published the final report of a project which explored how healthcare services can develop a Perfect Patient Information Journey.
A Phase 1 report published in May 2017, reviewed the available academic evidence and focus group discussions with patients and healthcare professionals to identify what was necessary for a Perfect Patient Information Journey.
The Perfect Patient Information Journey (Phase 2) took the findings and recommendations of the first phase research and applied them in practice during two pilot projects at St Mark’s Hospital, North West London and Hereford County Hospital Trust.
PIF examined the patient information journey for people with Inflammatory Bowel Disease (IBD) treated at St Mark’s Hospital. Working with patients and healthcare professionals, we carried out a gap analysis to identify areas of need. The IBD pilot study showed how a wide range of information needs were revealed through the process of gaining patient and staff insights.
As a result of the work at St Mark’s, PIF developed a 7-step process to support healthcare services to develop and embed patient information across their pathways. By using this process, services can create a ‘Perfect Patient Information Journey’ and transform the information experience of patients in a matter of months.
These 7 steps are:
- Get the leadership team on board and clarify roles
- Find out what your patients think
- Find out what your staff think
- Map the current patient information journey and identify gaps
- Identify and make improvements
- Evaluate the impact of changes made
- Benchmark, review and maintain patient involvement in implementation of change.
The second pilot project at Hereford County Hospital, tested step 1 of the process. Both pilot studies demonstrated the importance of investing time in the process and in having clear leadership to drive improvements across an organisation.
The findings of both phase 1 and phase 2 of the ‘Perfect Patient Information Journey’ have been combined into a single set of recommendations:
- Information should be at the forefront of healthcare service planning and delivery. To ensure this happens, services should consider a patient’s information flow across their pathway by using the 7-step ‘Perfect Patient Information Journey’ process.
- Healthcare services should ensure they have appointed a named senior level Patient Information Lead to ensure patient information is high-quality, easy to understand and accessible.
- Healthcare professionals should signpost patients to high-quality, accessible sources of information throughout their patient journey.
- Patients should be supported to ask questions to help them to take an active part in their care and share decisions, for example through decision aids or checklists.
- Services should evaluate the impact of the information they are providing and make improvements where identified.
- NHS England and the Care Quality Commission should set clear national standards for information provision for healthcare services.
- Industry, the NHS and advocacy groups should form partnerships to identify and create high-quality information mapped to the key points on a ‘Perfect Patient Information Journey’ in individual long-term conditions.
The full report is available here: PPIJ-25Jun18.pdf and video clips can be viewed and shared from our YouTube channel. There is also a blog from Sue Farrington and a blog about the PPIJ launch event. The BMJ produced a podcast interview with Sue Farrington. Article in Healthmanagement.org.
Guide to Personal Health Records: learning from voices of experience
Published in 2017, this guide is for anyone who would like to find out about Personal Health Records (PHRs).
It shares the experiences of people who have first-hand experience of developing or using Personal Health Records.
It starts by exploring what sorts of PHRs are available and who might want them.Then we discuss aspects of PHRs that people highlighted as being the most important, concluding with a checklist of key things to consider.
You can download the guide here: pif-phr-guide-2017-v2
The press release for the report can be read here: https://www.pifonline.org.uk/learning-voices-experience-personal-health-records/
Is Knowledge Power?
In March 2015 PIF and health policy consultancy MHP Health published in a new report, ‘Is knowledge power? Using information and support to empower patients’. It reveals that a fifth of patients disagree that they have enough information to feel confident in discussing decisions about their own treatment with their doctor.
Research was conducted to determine the progress and prospects for empowering patients through information, central to current NHS policy. This is particularly relevant when improved self-management by people with long-term conditions is seen as a key driver of sustainability for the NHS.
A nationally-representative sample of 6,000 people, including 1,567 people with long-term conditions were surveyed as part of the research. Based on the poll findings, the report estimates that in England:
- 36% of patients with a long-term condition, over 5.5 million people, disagree that they were given helpful information about their condition when they were first diagnosed
21% of patients, representing over 3.2 million people, disagree that they have enough information to feel confident in discussing decisions about their care with their doctor
29% of patients, over 4.4 million people, feel that their views are not taken seriously by their doctor
You can read the full report including PIF and MHP’s recommendations for actions here:
Guide to Producing Health Information for Children and Young People
This resource, published in 2014, aims to help anyone who communicates with children and young people about their health improve what they do, and shares practical advice as well as examples of current best practice in the field.
The guide focuses on the practical aspects of creating good health information, including involving children, choosing the right format, writing for children and tackling sensitive issues.
It covers use of stories and play, social media and apps, how and when to give information, use of schools and the Internet as channels and communications for children with disabilities and special needs.
Experts from child psychiatry, leading children’s health charities, Great Ormond Street Hospital, NHS England and children’s literature have all contributed to the guide.
The Guide is free to download here: PiF-Guide Producing Health Information-Children and Young People-2014
Published in May 2013, the Case for Information report brings together the evidence for investing in high quality information for patients and the public.
The report describes the main findings and concludes that there are good business reasons to justify the need for commissioners and providers to invest more resource (time, money and training) in health information provision and support.
The evidence shows that providing high quality health information is beneficial. It has a positive impact on service utilisation and health costs, patients’ experience of healthcare and patients’ health behaviour and status.
Providing access to quality health information and support is crucial to unlocking what has been termed the ‘blockbuster drug’ of patient engagement. Patient engagement is vital to help people manage their health, make informed decisions about their healthcare, and mitigate financial pressure on the health service.
Evidence from the report points to the most effective ways of providing consumer health information and maximising its impacts, including information tailored to the individual which addresses health literacy needs and which is supported by health or information professionals.
PiF is therefore calling on policy makers and commissioners to take action to make sure patient information is an integral part of their approach to providing high quality patient-centred care by:
The report and associated briefings are all FREE to download.
Guide to Health Records Access
This Guide, published in 2013, is about shared Personal Health Records (PHRs) – an area which has the potential to facilitate a step change to enable individuals to manage their care, and make decisions about their health.
This guide is aimed at practitioners, managers and patient organisations in health and social care in the UK. It gives a vision for the future of Personal Health Records, and an understanding of some of the challenges and barriers which must be overcome in order to realise their full potential. It points to solutions to these barriers and is, in effect, a call to action.
The Guide brings together the perspectives of policy makers, clinicians, suppliers and patients themselves. Throughout the text, case studies illustrate the current status of records access around the UK and the potential for the future.
- Chapter 1 defines PHRs and explains the different levels of access, patient co-production and cross-organisational integration which are possible. It sets PHRs in the context of the development of records access in the UK and the newly launched Information Strategy for England.
- Chapter 2 describes the patient and citizen perspective on PHRs. This includes the potential benefits for patients and the public but also some of the risks, such as concerns about safety, and widening health inequalities.
- Chapter 3 discusses PHRs from the health and social care professional perspective. It explains some of the concerns about PHRs which have been barriers to their widespread uptake. It counters these with some of the benefits seen when PHRs are implemented in practice.
- Chapter 4 describes the benefits of PHRs from the commissioner and health system perspective. It summarises what steps towards records access are included in the new Information Strategy for England, but also highlights important issues still to be tackled by all four UK health systems in order to give PHRs a chance to realise their full potential.
- Finally, there is a chapter listing useful resources and organisations, and a glossary of terms.
The Guide is free to download here: PIF Guide-Health Records Access-2013
Health Literacy Survey
Published in June 2013, this report summarises the findings of a survey PIF conducted among information producers which sought to gain insight into health literacy from the information producer perspective; exploring whether information producers know what it means and how important they think it is; what specific strategies they have to address the needs of people with low health literacy and how these strategies are implemented.
Click here to read the report: PiF-Health-Literacy-Report-WEB-NEW-FINAL
Guide to Appraising Health Information
**Please note the content of this guide has been updated and is now available on the PIF website here (March 2016)**
This 2010 guide to appraising health information is about assessing the quality of information, and the processes used to develop it. The guide is for people and organisations that produce health information for patients and the public. It can be used by any size of organisation, in any sector.
The guide is split into a number of chapters that provide a comprehensive look at the subject.
- Chapter One puts quality and appraisal into context, exploring why quality is important and what it means in the world of consumer health information. There is information about the benefits of high quality information, for both users and producers, and some of the background that explains why quality has become a more prominent issue. Finally there is a look at general methods of appraisal.
- Chapter Two explores the appraisal of the processes used to develop consumer health information. This includes a broad look at tools that assess information development processes, the requirements of appraisal in the NHS and the Information Standard scheme that operates in England.
- Chapter Three is about the tools available to information producers to help them appraise individual information resources. This includes tools for printed and online information, award schemes, guidelines and readability tools.
- Chapter Four looks at appraisal for information users and explores the challenges of finding quality information, including searching the Internet. Tools for users are discussed, as are the pros and cons of using them.
- Finally, there are four appendices that contain information on background subjects such as policy, the development of appraisal and other important schemes.
The Guide is free to download here: PIF Guide-Appraising Health Information-2010
Quick Guides & Factsheets
- What source when? Creating reliable and accurate information
- Methods for involving users – introduction
- Communicating risk – introduction
- Communicating risk – perceptions of risk
- Communicating risk – know your numbers
- Communicating risk – illustrating risk
- PIF Resource Review Tracker spreadsheet
- A beginner’s guide to planning and developing health information
- Communicating the quality of evidence
- Good Referencing
- Working with clinical experts
- Introduction to health literacy for information producers
- Disability Information
- Good Design Basics
- Introduction to Evidence Based Patient Information
- Making Your Information Accessible
- Producing Good Medicines Information
- User testing consumer health information