A year ago PIF published the findings of its health and digital literacy survey.
Our panel of experts made 10 recommendations to help promote health and digital literacy and help tackle health inequality.
In summary, the recommendations were:
- Incorporate health and digital literacy into health strategies of the four nations of the UK.
- Health information producers should aspire to become health literacy friendly.
- NICE to develop health literacy guidelines and recognise health and digital literacy in new and updated NICE guidelines to recognise health and digital literacy.
- Health-literacy friendly patient information as a requirement in national standards and guidelines on shared decision making.
- Develop specified UK standards on health literacy within the PIF TICK criteria.
- Create good practice guidance.
- Create a central NHS repository for health-literate information in English and other commonly spoken languages.
- Raise awareness of the WHO definition of digital health literacy.
- Support community motivation and skills improvement.
- Organisations should consider the equalities impact of digital tools.
Here is what we have done to put the recommendations into practice so far.
Health and digital literacy friendly organisations
Following the publication of our health and digital literacy survey we launched our Health and Digital Literacy Charter.
Almost 100 organisations have signed the charter since its launch in Health Literacy Month 2020.
Health and digital literacy friendly organisations make it easier for people to navigate, understand and use information and services to take care of their health by:
- Using clear communication (verbal, written, digital)
- Creating easy-to-use digital tools and information
- Involving people in the development of information and inviting feedback
- Training staff in health literacy
In May, to mark Global Accessibility Awareness Day (GAAD), we published an open letter signed by more than 40 charter members calling on all organisations to adopt these objectives.
PIF developed CPD-accredited training to support the charter’s objectives.
Our Health and Digital Literacy training covers an introduction to health literacy, writing in plain language, implementing a health literacy audit and assessing the equality impact of digital tools.
So far, 35 organisations have taken part in the training.
More than 60 delegates have also completed PIF’s writing health information training so far this year.
The training embeds the principles of health literacy in information production.
WHO definition of digital health literacy
The World Health Organization (WHO) defines digital health literacy as: "The ability to seek, understand and appraise health information from electronic sources and apply the knowledge gained to preventing, addressing or solving a health problem."
The pandemic has caused a rapid shift to digital health.
PIF has consistently promoted the WHO definition and asked organisations to consider both health and digital literacy needs of their users.
Lobbying for health literacy in NICE guidelines
Our recommendations called on NICE to develop guidelines on health and digital literacy to drive change and provide an evidence base.
We also asked NICE to ensure health and digital literacy is recognised in new and updated guidelines, with particular reference to shared decision-making.
PIF lobbied to ensure health literacy was addressed in the NICE shared decision making guideline published this summer.
We were particularly pleased to see the emphasis on risk communication.
PIF was a member of the oversight panel for the NICE Standards Framework for Shared Decision Making Support Tools.
This accompanies the guideline and allows developers and the public to assess the quality of decision aids.
It says decision support tools should use ‘everyday language that is widely understood, or simpler language where necessary, ideally for a reading age of 9-11'.
Health literacy as a requirement in shared decision making
The NICE framework supports our key recommendation to ensure health-literacy friendly patient information is embedded in planned national standards and guidelines on shared decision-making.
It is now being used by NHS England to develop decision aids for common surgical procedures.
This should improve patient experience and support clinicians to provide clear evidence-based information.
PIF was also a member of the stakeholder group which developed the Professional Records Standards Body draft standard on shared decision making.
We again emphasised the importance of health-literacy friendly information for people making decisions about treatment.
The standard is a work in progress but aims to help make shared decision making part of day-to-day care.
We believe this is vitally important as recent work by the Patients Association has shown shared decision making is still not a reality for many patients.
The issue was also highlighted in our recent Maternity Decisions: Being Induced survey. Full results will be published in November.
Embedding health literacy in the PIF TICK
Ninety organisations have joined the PIF TICK – the UK quality mark for trusted health information.
Member organisations open their information production process to external scrutiny and are assessed against 10 key criteria.
These criteria build in health and digital literacy throughout the information production process.
With almost 50 organisations now accredited, the PIF TICK criteria have defined quality health information.
They dovetail with the NICE Standards Framework for Shared Decision Making Support Tools.
Organisations developing decision support tools using a PIF TICK certified production process will be able to use the PIF TICK trust mark on their materials.
Developing good practice guidance
PIF’s Health Literacy Matters poster was published in December 2020.
It was created in response to member demand for a one-page summary making the case for health-literacy friendly information.
This has remained one of our most popular resources.
The poster prompted a challenge on PIF’s recommendation to aim for a reading age of 9-11 in health information.
This remains our policy and supports PIF’s inclusive vision that everyone should have access to trusted health information.
The most recent OECD data said 1 in 6 people have ‘very poor literacy skills’.
Other guidance published this year includes:
- An update to our Co-production: Involving users in developing health information guide
- A Co-production Matters poster
- A Web accessibility – quick guide
Further guides, including plain language and translation resources, will be published shortly.
Equalities impact of digital tools
We recommended organisations implement the accessible information standard.
They should also consider other reasons for digital exclusion and the equalities impact of digital tools.
Since November 2020 we have worked in partnership with Connected Nottinghamshire, a signatory of our health and digital literacy charter, to overcome barriers to the use of the Notts NHS App in groups at risk of digital exclusion.
We worked with older adults, migrant communities and carers to identify barriers.
The next phase of the work will focus on co-creating solutions, including culturally appropriate information for diabetes care.
The work with Connected Nottinghamshire was a focus of the PIF session at National Voices’ Dismantling Health Inequalities Conference and a presentation at NHSE Conference on Mitigating Against Digital Exclusion.
NHS repository for health literate and translated information
The work in Nottinghamshire with migrant communities has reinforced the importance of the need for an NHS repository for health-literate information in English and other commonly spoken languages.
A lack of centrally available translated materials remains a challenge for PIF members.
Our stakeholder survey in early 2021 showed strong support for a repository of translated, culturally appropriate material.
In September we collaborated with NHS Digital to run a member survey on translation issues.
The results were shared at a webinar where a panel of expert speakers also gave insight into how to manage health information translations.
A key recommendation was to start with health-literacy friendly materials before attempting to translate.
Speakers also recommended developing a clear brief to meet the specific needs of individual communities.
The NHS Digital discovery work is on-going and PIF is currently developing guidance on translation for members.
Community skills improvement
PIF partners with Health Education England, NHS Scotland, NHS Wales, The Reading Agency and Libraries Connected on Health Information Week.
We marked Health Information Week with the launch of the PIF TICK public facing website.
The site signposts trusted information produced by PIF TICK organisations and provides simple guides on topics including:
- Finding trusted health information
- What is clinical evidence?
- False health information – the warning signs
- What is evidence and why is it important?
- What is patient data?
We’ve made progress this year on all our recommendations but there is still lots to do to achieve our vision.
In the coming weeks we will complete our strategy review and set PIF's agenda for 2022-25.
We are also planning new how-to guides on writing in plain language and translating information as well as a webinar on the use of inclusive language.
Be in no doubt health and digital literacy will remain at the heart of PIF’s work.
We look forward to working with members and partners to ensure everyone has access to trusted health information