Any questions?

06 June 2019

Having access to, and understanding, quality health information is vital for life, yet too many adults are still missing out. Journalist Erin Dean asks, what’s going on?

In England, four out of 10 working age adults are unable to understand and make use of everyday health information, rising to just over six out of 10 when numeracy skills are needed (Rowlands, 2015). This includes understanding child doses for basic painkillers.

Research has also shown that access to information and the use of it has a profound impact on health (Berkman, 2011), with the WHO recognising it as ‘a critical determinant of health’ (WHO, 2016).

In fact, the WHO says that health literacy is a stronger predictor of an individual’s health status than ‘income, employment status, education level and racial or ethnic group’ (Kickbusch, 2013).

The WHO defines health literacy as ‘people’s knowledge, motivation and competences to access, understand, appraise and apply health information in order to make judgements and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course’ (Kickbusch, 2013).

Community Practitioner looked at health literacy last May (Astrup, 2018), yet it’s a topic that warrants more attention.

The barriers

High-quality information can have a huge impact on people’s ability to stay healthy and manage illness effectively

Reading and writing ability is an important determinant of being able to access health information, but there are other barriers. These include access to the internet and feeling comfortable with digital communication, and knowing where to find good-quality health information in the first place. Lack of confidence can play a role. And of course the health information that exists needs to be as clear as possible, as does the way professionals communicate information to their clients.

The importance of being able to access and utilise good health information will be highlighted in next month’s Health Information Week. Running from 1 to 7 July, this multisector campaign headed by Knowledge for Healthcare (KfH), part of NHS Education England, will promote high-quality health information for the public.

In line with the WHO’s views, KfH say that high-quality health information can have a huge impact on people’s ability to stay healthy and manage illness effectively, giving them a better quality of life. Themes for this year’s event include innovations for preventing illness, long-term conditions and social prescribing, mental health and digital literacy.

As for population groups more likely to have low or inadequate health literacy, these include those from more deprived backgrounds, migrants and people from ethnic minorities, older people, people with long-term conditions and disabled people (PHE and UCL, 2015).

With regards to traumatised asylum-seekers and refugees, Scottish Refugee Council policy officer Graham O’Neill says that if these people are to get access to the information they need, the NHS must make major improvements.

‘Sometimes an interpreter is not offered even though this should be standard practice,’ he says. ‘There needs to be a systemic understanding of the refugee experience in order to improve not only information but practicable access to services.’

The Scottish Refugee Council says the people they support face barriers for a number of reasons. Partly it’s a result of the fear generated by the wider hostile environment towards refugees. Other reasons include a lack of information in their own languages and fear of asking the wrong questions or being stigmatised by health professionals.

Professional chat

Professor Joanne Protheroe, director of general practice education at Keele University and chair of Health Literacy UK, feels that a significant part of the problem is that healthcare professionals are giving out information that is too complex.

‘Professionals’ lack of awareness of the complexity of the information, and of how low health literacy levels in the population really are, means we are not aware that we are not always understood,’ she says. ‘Then add to that the lack of empowerment among people who have low health literacy and a lack of confidence to challenge healthcare professionals and to say they don’t understand.’

The training that community practitioners and health professionals in general have had means that it becomes easy to forget that many terms are not familiar to the rest of the population. ‘Health staff make a lot of assumptions,’ says Professor Protheroe, ‘such as when telling a patient to take medication three times a day, they may assume a patient will know to spread them out throughout the day. I have heard stories of patients taking them all in the morning.’

One approach to ensure that service users are understanding information is to encourage questions and use approaches, such as ‘teach back’, to check that people have been able to take the information in [see Getting the message across, below].

Getting the message across: techniques to improve understanding

  • To confirm that the information you provide is understood, ask people to ‘teach back’ what you have been discussing and what instructions you have given.
  • Break down the information that you need to discuss, and that you need the person to understand, into smaller, more manageable chunks. In between each chunk use methods such as teach back to check they understand before moving on.
  • Use simple language as much as possible. Try to explain things to people as you would to a friend or family member.
  • Spoken and written word is often misheard or misread and also misunderstood. Pictures and visuals may be effective in improving understanding when communicating new or complex ideas to people.
  • Routinely offer help with paperwork.

For more from the Health Literacy Place, NHS Education for Scotland, see bit.ly/talking_clearly

Other useful websites include healthliteracy.org.uk and bit.ly/digital_literacy_HEE

Digital questions

Some people don’t have the skills and ability to engage with digital information and it is about providing support to them

In line with most areas of life, many people now routinely access information about health conditions and local health services online, including booking appointments and ordering repeat prescriptions. But while the Office for National Statistics (ONS) found in 2018 that 90% of UK residents were recent internet users, rates were lower for people aged over 75 and people with a disability (ONS, 2018). So it’s certainly not a given that all clients are familiar with the digital way of life.

In fact, only 44% of adults aged 75 years and over had used the internet in the previous three months according to the ONS findings (2018), while 20% of disabled adults had never used the internet, although this figure was falling. There are also variations around the UK, with Northern Ireland having the lowest rates of internet use.

More specifically, the science and technology select committee report in 2016 said that up to 12.6 million people in UK lack basic digital skills. Sophie Castle-Clarke, digital programme lead at the health think tank the Nuffield Trust, says the reasons these people don’t engage with digital services are complex.

‘They are often vulnerable people. About 60% of them had no qualifications, and 67% were over 65 years old,’ she says. ‘With older people there is a higher drop-off rate of internet use. So they started using it but stopped for a number of reasons, including cost, lack of skills and knowledge, feeling it wasn’t useful for them and concerns it could replace face-to-face interactions.’

A Nuffield Trust report says that professionals should actively recommend online patient networks and trusted sources of information (Castle-Clarke and Imison, 2016). Online tools should include visual images and diagrams where possible. Where this is not prioritised, online information may be misunderstood, cause anxiety and drive people to the healthcare system unnecessarily.

The most effective initiatives involve staff actively showing people how to use online services, in their own language if they are not English speakers, and clearly demonstrating the benefits of this.

Sophie says: ‘More and more people will start to change how they think about their own health and care as a result of the digital information and resources available. There will be some people who don’t have the skills and ability to engage and it is about providing support to them. That is a complicated picture, it is not just about giving somebody an app or telling them to go and do something, there is a lot more to it and a lot more support needed.’

What’s being done?

Ensuring that people have understood what you are saying, such as how to manage their diabetes, will save more time in future

Pioneering work on health literacy has been taking place in Stoke-on-Trent, and part of the work has encouraged patients to ask questions. The ‘It’s OK to Ask’ campaign includes staff wearing badges, displaying posters and speaking to patients, all to actively encourage them to ask questions.

Patients are urged to ensure that at the end of an appointment they know what their main problem is, what they need to do and why it is important they do that. They are also advised to take a list of questions with them, and to bring a relative or friend and not to feel rushed or embarrassed about checking or asking any questions.

Launched by the local clinical commissioning group at the start of Health Information Week two years ago (2017), packs were sent out to hospitals, GPs and pharmacies. A Keele University evaluation found that the campaign was well-received by clients, but during short health appointments, they often felt pressured and unable to ask questions (Estacio, 2018).

Case study: talking to people on the margins

Leeds community outreach nurse Liz Keat runs a pioneering and award-winning service with the local Gypsy and Traveller community, many of whom cannot read or write well. This is one of the city’s most marginalised communities, with poor health outcomes and where the life expectancy is just 50 years. Liz works for Leeds Community Healthcare NHS Trust.

‘This community relies on the spoken word,’ Liz explains, which contrasts with health information and health services that are generally based around the written word.

‘Referral letters for diagnostic appointments arrive in the post with “choose and book” information. But these usually need to be carried out within 14 days. If people cannot read and are waiting for an advocacy service to read it for them, then it often doesn’t happen within this timeframe.

‘Then the people are discharged from the service. I found this referral could happen repeatedly with the person never seen by secondary care. This means people either give up or are diagnosed and treated later than they should be.’

Information given to patients who are newly diagnosed or given new medication is generally written too, she says.

‘This community experiences higher rates of long-term conditions so if patient information is only offered in written form, it’s highly unlikely the condition will be managed well. Ultimately, this affects a person’s self-esteem and can cause frustration and apathy.’

Improvements include ensuring GPs state in referral letters that if patients need a different communication method, such as a phone call, that the hospital should call to arrange an appointment. Advocacy and outreach services also help.

‘I have found YouTube videos really helpful and often show them to patients,’ says Liz. ‘Organisations such as Asthma UK have helpful films on using inhalers, for instance.’

Health visitors are a vital source of information for families, and many of the Gypsy and Traveller communities were not getting access to this health visiting service.

In Leeds, thanks to the general proactive approach being taken, health visitors are now doing outreach to roadside encampments and visiting opportunistically to camps, to ensure that parents can get their support.

In terms of steps from the national governments across the UK to make health information more accessible to people and easier to understand, there is movement.

In England, health literacy was mentioned in the NHS long term plan (NHS England, 2019) published this January, while Scotland has Making it easier, a health literacy plan for 2017 to 2025 (Scottish Government, 2017). As part of this project, more than 90 trainers across the health and care system were educated to promote skills for better health literacy practice.

In Wales, the Fairer health outcomes for all document to tackle health inequalities included improving poor health literacy (Welsh Assembly Government, 2011). And a review last year said new public health plans should include health literacy targets (Review of Health and Social Care, 2018). This does not seem to have happened, but the Public Health Wales long-term strategy for 2018-30, pledges to tackle health inequalities and the wider determinants of ill health (Public Health Wales, 2018).

In Northern Ireland, health literacy was a key theme in Making life better, the 10-year public health framework that runs to 2023 (DHSSPSNI, 2014). However with no government for more than two years, there have been widespread reports of a health service in difficulty in Northern Ireland (Griffin, 2019).

On the digital front, steps are being taken to narrow the digital inclusion gap. For instance, a report in Wales said that digital inclusion should move from the margins to the mainstream of health and social care planning and delivery, and be seen as a key enabler of prudent healthcare (Gann, 2018).

Last November, the Welsh health secretary also announced a £3m investment to help improve staff and patient access to technology (Welsh Government, 2018). Vaughan Gething said the three-year programme will help staff and patients engage with technology and manage their medical information online.

NHS Digital is leading a range of projects in England to improve care, including a project improving the access of homeless people to healthcare information in Hastings (NHS Digital, 2019). While Scotland’s digital health and care strategy (2018) aims to make care more person-centred (NHS Scotland, 2019).

Of course, lack of resources and time can impact on how information is conveyed by any health professional and how clients are signposted (and what they are signposted to – quality information needs to exist in the first place). However, Professor Protheroe says that health and other staff can feel that giving people the chance to ask questions will take longer than it actually does.

‘Staff can worry that encouraging questions will open a can of worms and take up lots of time, but I don’t think that is the case. Ensuring that people have understood what you are saying, such as understanding how to manage their diabetes, will save much more time in the future.’

She continues: ‘Research has shown that a patient-centred way of encouraging questions, such as saying “We have spoken about a lot, what are your questions?”, and assuming there are questions, rather than asking “Do you have any questions?”, can help. It is only a subtle change but much more encouraging.’

The impact

12.6 million people in the UK lack basic digital skills

43% of adults struggle to understand the instructions for a child paracetamol dose

61% of adults cant understand everyday health information when numeracy skills are needed



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Image credit | IKON

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