The UK Government has set out its plans to "build a health service fit for the future". It is running a public consultation to help shape a 10-year plan for the NHS in England. As part of the consultation, organisations were invited to submit their views around five key questions.
PIF wants to see the development of a health-literacy friendly NHS which people can navigate with confidence. This includes embedding signposting to patient support groups and PIF TICK certified health information, making the voluntary NHSE content standard mandatory across all NHS organisations and updating the Accessible Information Standard to include digital inclusion and translation.
Access to trusted health information will be fundamental to the success of the proposed three shifts – hospital to community, analogue to digital and sickness to prevention.
Read our response to the questions set out in the consultation below.
PIF wants to see the development of a health-literacy friendly NHS people can navigate with confidence. Meeting this objective will support the three shifts identified by the government in this consultation. We have three core asks:
A person’s right to information to inform their care is enshrined in the NHS Constitution. According to data from our 2024 IPSOS survey of 2,000 adults, 8 out of 10 people want access to trusted health information to help them manage their health but 1 in 2 are struggling to access it.
Health literacy
Poor health literacy is a key component of health inequality. In 2021 WHO updated its definition of health literacy to place greater emphasis on healthcare providers to enable people to look after their health with user friendly resources and services. Core skills are not the only component of health literacy but they are fundamental. OECD skills data shows:
Research by Rowlands et al in 2015 found 43% of adults do not have adequate literacy to understand health information. 61% struggle when numeracy skills are also needed. A 2023 study found 5 in 10 people had concerns about the readability of medicines information. Around 3 in 10 found medicines information difficult to understand. In November, preliminary data on health literacy in Europe found the biggest health literacy challenges faced by the UK population are treatment decisions, finding information about health in the mass media, finding information about mental health and making decisions about screening.
As well as the individual impacts there is a system cost. People with low health literacy are:
For example, a lack of health literacy led to two ICU admissions resulting in an approximate cost of £70,000 for one patient with asthma at Mid Yorkshire Hospitals NHS Trust. This led to the trust to develop specific information to support the local South Asian community.
In the UK, there are 900,000 people who cannot speak English well or at all. Around 6 in 10 of those are girls or women. Health literacy is changing as technology develops at pace. As well as traditional literacy skills, information literacy and digital literacy are required to navigate health information and misinformation. And digital exclusion is growing:
Those living in poverty, elderly people and ethnic minority communities are most affected by these challenges. All contribute to health inequalities and there is intersectionality of factors which compounds difficulties.
Access to information and the relationship with health professionals
PIF research in 2015, found people faced significant challenges with access to information at diagnosis and when discussing decisions about their care. Finding trusted health information has become ever more critical in an era of misinformation and there are inequities in access which compound health inequality. We have just published new data from Ipsos – a representative survey of 2,000 adults. The findings are sobering.
Access to trusted health information will be fundamental to the success of the proposed three shifts. We will deal with each of these in turn.
The biggest challenge is ensuring people understand how to access new care settings and services. Navigating the NHS is already complicated for some people. The barriers identified by the PIF membership include the following:
NHS organisations delivering care should have a dedicated lead for health information mandated to ensure consistent and effective delivery of information that meets national standards. All NHS organisations should make a commitment to being health literacy friendly. People should experience a consistent information experience across the system and along care pathways.
The PIF Health and Digital Literacy Charter has been signed by more than 100 organisations. They have committed to make it easier for people to navigate, understand, and use information and services to take care of their health by:
We would like to see the development of a health literacy maturity matrix to measure progress against these measures. It can mirror the model of the digital maturity matrix. We supported early discussions on the development of a matrix with charter signatory Hereford and Worcestershire ICB.
Elsewhere, Dorset County Hospital has health literacy champions who review materials, report to the Health Inequalities Group and provide health literacy training for new doctors. Guy’s and St Thomas’ NHS Foundation Trust’s information team is PIF TICK certified. The information team has used the criteria to guide the evolution of health information to make content to make it more accessible, easy to understand and inclusive. This included working with the supplier of the Trust’s patient portal to make it more health literacy friendly. NHS Digital Notts has put health literacy friendly information at the heart of its digital products. It has provided bespoke health and digital literacy training across the skills mix of staff, from those providing care to those supporting digital inclusion.
It is vital there is consistent messaging along the same care pathway – from hospitals and GPs, to pharmacies and treatment or diagnostic centres. Having a consistent information infrastructure and a single care record will be required to help patients navigate new care pathways. Developing a library of good patient information and communication practices that work will support local NHS organisations and avoid wasteful duplication. A “do it once and share” approach should be adopted to information interventions with a positive impact on health outcomes and health inequality.
For example, HCPs working for NHS Wales are mandated by the Welsh Risk Pool to use EIDO Healthcare information for surgical consent. The PIF TICK certified library of 430 documents is clinician led, has accessibility options and is translated. Welsh, Arabic and Polish are the most used translations. A quarter of a million documents were downloaded last year. The aim is to improve patient care and reduce the amount paid for claims relating to consent.
NHS Resolutions received almost 5,000 claims relating to consent in the last five years resulting in more than £500 million in payouts. As procedures move out of hospital, having a consistent approach to informed consent will be vital. Staff across the skills mix will require training to support decision making. As our data shows, 1 in 6 people do not feel supported to make decisions about their health.
About Me information, meeting the standard set by the Professional Record Standards Body (PRSB) should be integrated into the NHS App and the personal health record. This would support healthcare professionals to have better shared decision making and consent conversations with patients.
"About Me’ gives them an idea and they may ask you a few questions. There is not so much of a barrier. It is a bit more equal. It does prompt the HCP to ask questions." Patient quote from PIF and Patients Association Shared Decision Making project in Nottingham.
The linked PRSB standard on shared decision making should be implemented across the NHS, recording the information supplied to patients.
To track progress on informed decision making, national measures of lived experience of patient centred care should be introduced across care pathways including.
These feedback mechanisms should be built into the planned NHS digital ecosystem. For too long patient experience has been dismissed.
Digital presents huge potential benefits for the health system and patients. Appetite for the NHS App, NHS.uk and more recently the NHS YouTube channel demonstrate this as do the wide use of health apps, wearables and home monitoring devices.
However, safeguards are needed to ensure people reach safe digital spaces and a safety net is vital for people who struggle to access digital. There are also barriers related to data sharing and fear of being scammed which the system needs to overcome.
The second major challenge is the failure of NHS digital systems to interconnect. People expect the same joined up digital experience from the NHS they have from financial services. Instead they experience fragmentation and a lack of interoperability. DETAC sets some standards for the ‘box’ of digital technology but little ‘related’ to the content and functionality.
Earlier this year we worked with the Professional Records Standards Body (PRSB) to identify challenges to the uptake of digital patient portals. A lack of coordination, oversight and evaluation of portals results in:
Importantly, we found some patients using multiple portals to manage different elements of their care. These didn’t interact, leaving the patient as the only integrator of their care and raising patient safety concerns.
Misinformation is a huge challenge and 1 in 2 people do not have the confidence to trust what they find online. This finding from PIF’s Ipsos data is consistent with data published elsewhere, including the Self Care Forum’s data, also published in November.
The NHS and healthcare professionals are the most trusted providers of health information but they are not consistently signposting people to trusted sources of information and support. Technology can enable this. This is essential when 1 in 10 people say they have been affected by misinformation.
There needs to be a co-ordinated national effort to support digital inclusion and provide a safety net for people who cannot access healthcare. A single patient record and a standards framework for portals and plug-ins focussed on useability, interoperability and data security is essential to overcome fragmentation of experience. These must have a low data burden so people can afford to use them.
The NHS App should signpost people to trusted sources of information and support. This should sit alongside prescription information to help people self manage and self care and avoid harmful misinformation. PIF TICK provides an assurance and PIF TICK certified organisations should be signposted via the NHS app and the proposed single health record. There should be a national green light across the NHS to signpost PIF TICK certified information.
For example Healthinote is Cognitant’s digital library of credible health information and self-management tools for people with long-term conditions. It is used to create personalised information from multiple sources for patients. Cognitant’s information is PIF TICK certified and delivered in accessible formats in multiple languages. The platform is used in both secondary and primary care settings.
The new hospital programme presents an opportunity to embed health information provision for people with and without digital access. For example, the new Royal Sussex County hospital in Brighton has a large public area where people can access the internet and a health information shop where people can seek advice and support and support from staff to access information. MSK, mental health and diabetes are the top 3 health topics from visitors to the centre. Clinicians can also refer in-patients for information and support.
Technology is advancing rapidly, including language technology. Translation is a key area of opportunity to use digital tools to empower more people to effectively manage their health. Chatbots can be used to engage with audiences who might not use traditional helplines. These are now being tested by some Trusts.
But the shift from analogue to digital must include support for people to access digital health, ensuring they find safe digital spaces that meet their needs. The PIF TICK provides a means of verification. More than 140 organisations are certified. It is gratifying to see public awareness of the PIF TICK increasing to 1 in 10 among young people.
NHS England is partnering with public libraries to improve access to the NHS App and NHS.UK. The campaign also signposts websites with trusted health advice. The PIF TICK Directory is part of the toolkit. The pilot aims to increase digital inclusion and empower people to take an active role in their health. PIF would like to see similar partnerships across the UK in schools, prisons and other settings.
Prevention falls into two main categories – primary prevention and secondary prevention.
Public health is in decline, we have an obesity crisis and a mental health crisis. Misinformation is contributing to vaccine hesitancy. There is a danger the UK could lose its measles free status. Many of the challenges in public health are outside the control of the NHS, but not outside the control of the government which could tackle child poverty and insist on stricter food and alcohol labelling and pricing.
The PIF Ipsos data found only 1 in 10 people are signposted to patient support groups and 1 in 5 people with long term conditions had not received any information since diagnosis. Yet 4 in 5 people say access to trusted health information would help them manage their health.
Information is fundamental to prevention both to detect disease early, prevent it from deteriorating through better self management and avoiding or recognising flares of disease early. However, the latest health literacy data shows that these are exactly the areas people most struggle with.
Barriers preventing NHS signposting to external sources include lack of capacity, lack of training and inconsistent trust governance procedures. These barriers must be removed. There is a need to activate the right to health information.
There is a host of high quality information to support people if they can find it. But changes to the Google search function made this harder from August 2024. Google’s AI Gemini search summaries push both NHS and national health charities down the search results pages. Charities are already reporting a fall in traffic.
Official medicines information is inaccessible and has not kept pace with technological change. When people don’t understand medicines information they turn to the internet. There is a host of misinformation online. Yet health professionals and the pharmaceutical industry are legally limited in the statements they can make to counter misinformation.
The MHRA needs to review the regulation of medicines package leaflets to make them easier to understand and use and make them more accessible. Providing electronic versions of package leaflets will not make the content easier to understand.
Many health issues including obesity, smoking and addiction are highly stigmatised and most prevalent in areas of the highest deprivation. Co-created public health campaigns and harm reduction strategies need to be developed with the communities at greatest risk. Judgement has to be removed and people need to be able to access support services to be able to make changes to behaviour. A key part of this is mental health support. These were the key messages from a project on healthy living information for people on the MSK pathway in Nottinghamshire. Working with local people and the Patients Association we developed concise and supportive resources that removed stigma and dealt with issues of misinformation.
This approach to material development should be applied to other public health challenges including vaccination. A creative approach to engage communities in vaccination is required. NHS Scotland’s campaign ‘Beat the flu with a wee Scoosh’ used colloquial language to engage the population and performed well on user testing. That message has since been adapted and translated into other languages to ensure it is accessible to all.
Secondary prevention
Four in 5 UK adults agree that access to trusted health information would help them manage their health. A Health Foundation study of 9,000 people with long term conditions found those who felt confident to manage their health had 18% fewer GP visits and 38% fewer A&E visits.
Credible information from certified sources should be embedded in the NHS App and face-to-face interactions across the NHS. National signposting would support the public to care for their health and reduce pressure on NHS services and health professionals. There are many examples of effective campaigns.
Diabetes UK’s learning zone offers personalised information for people with diabetes. It has 190,000 users. Nine in 10 say they are more confident to self-manage and self-care. It has partnered with Accurx to develop text templates GPs can send to patients at diagnosis to signpost the charity’s services.
The National Rheumatoid Arthritis Society’s Right Start service runs in 205 hospitals. Patients have a 45-minute call with the NRAS helpline. They are sent a resource pack tailored to their needs and can access peer support. More than 2,000 people have been referred in two years. More than 9 in 10 rated the service as good or excellent. A full evaluation is underway.
Cognitant’s Kidney Essentials programme has been used by more than 2,300 NHS patients. More than 9 in 10 reported an increase in knowledge and there was 66% reduction in face-to-face follow-ups.
A PIF project at St Mark’s IBD hospital found a new diagnosis clinic, signposting to Crohn’s and Colitis UK’s information and the introduction of a flare card produced a sustained improvement in patient activation and people’s ability to self manage.
Local health systems are ideally placed to work with communities to tackle stigma around certain diseases. This was the case with Mid-Yorkshire’s BMA Award winning asthma information for the South Asian Community. Nine of 11 organisations commended by BMA were PIF TICK certified.
Cross sector partnership can be used to tackle key challenges. For example, the NHS, patient groups, prisoners and pharmaceutical companies worked in partnership to tackle hepatitis B and C in the prison population. These are highly stigmatised conditions impacting vulnerable people.
MRHA should review medicines information regulations to make it more accessible to the population, reducing medication errors and promoting adherence to treatment. Writing in plain language and using plain numbers and technology to better effect would help. For example QR codes linking to video instructions on how to use an asthma inhaler.
Recent co-production projects by PIF members Macmillan and Anthony Nolan have demonstrated people want simple information they can use and understand on new complex treatments. Both organisations aim for a reading age of 9-11 on their material. This recommendation received wide support in a survey of the PIF membership in 2022. It is embedded in the PIF TICK criteria.
National signposting to PIF TICK certified information and support from NHS services and the NHS app and NHS.uk would support the public to care for their health and reduce pressure on NHS services and health professionals.
It would reduce duplication at local level, provide a consistent experience for patients and allow NHS information teams to focus on the specific needs of their communities. It is crucial that a mandatory content standard applies across the NHS. The PIF TICK represents the gold standard but at the very least the NHS England content standard should be mandatory across the NHS.
As noted above, local information will be a critical success factor in shifting care from hospital to community and creating a health-literacy friendly NHS people can navigate with confidence. It is also a fundamental component of prevention, without access to trusted information people are unable to engage in healthy behaviours or access the services and support needed to do so.
PIF identified the following priorities as a quick wins: