Making it Easy

The ambition for a country focused on prevention and self-management, as outlined by the 2020 Vision for Health and Social Care, is lofty enough without factoring in that at least a quarter of Scots have poor health literacy.

If people cannot understand healthcare information, medicines or their own conditions, how can they be expected to be empowered to make decisions on their own treatment?
Making it Easy is the newly-published health literacy action plan for Scotland which attempts to address this issue. In the document’s introduction, Health Secretary Alex Neil says: “Making it Easy sets out an ambition and the means for all of us to live well, on our own terms, and with any condition we may have, by making sure health and social care services cater for each of us – regardless of our abilities,” and this statement hints at a shifting definition of health literacy: one which puts less emphasis on the patient, and more on the system.
According to Making it Easy, health literacy means more than being able to read pamphlets and successfully make appointments. “By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment,” it suggests.
Nurse Christine Hoy, aunt of the famous cyclist, now works for the Health and Social Care Alliance but was a major player in putting the action group together to start working on the plan. Writing for the NHS, Hoy suggests Scotland has a history of recognising a need for health literacy. She says Scotland’s earliest champion of health literacy is physician William Buchan who in 1784 wrote: “Medical authors have generally written in a foreign language; and those who were unequal to the task, have even valued themselves upon couching …their prescriptions, in terms and characters unintelligible to the rest of mankind. It is not to be supposed that men can be sufficiently upon their guard against diseases, who are totally ignorant of their causes.”
The new action plan launches “with an ambition to ensure the people of Scotland have the opportunity to live well” and “be sufficiently upon their guard,” she says.
Tayside GP Graham Kramer has been the clinical lead on the document.
“Getting to this point with the action plan really is just the starting point, and it gives us a green light to do more work,” he tells Holyrood.
For Kramer, health literacy is a substantial “hidden problem” because healthcare professionals don’t know how much is understood by patients. “What we’ve got to realise is although we realise how big a problem health literacy is in economic terms and population terms, and we realise there’s a clinical patient safety concern and a public health concern, what there’s not a lot of evidence on is what to do about it. For some people, that turns them off dealing with it, for me, it’s a green light, a chance to become a pioneer and for all of us to work out what’s going to make a difference. How can we make healthcare more engaging, to meet people’s health literacy needs, and whether that actually translates into better outcomes.”
The document doesn’t attempt to redefine health literacy, but rather tackle the effects of it. “It’s an evolving subject, evolving field, the definitions seem to change with it. Most of the definitions locate to a problem with the person but actually, some of the problem is the demands and expectations we place on people, which is overwhelming their skills and ability,” says Kramer.
He became interested in health literacy when dealing with patients with long-term conditions at his general practice in Tayside. He noticed how some conversations were limited and sought to improve his patients’ understanding of their condition. “I think what most healthcare practitioners go through is a stage of completely over-estimating people’s abilities. They talk to people in concepts and language they can’t really understand. We expect them to understand it, and don’t really appreciate it when people don’t understand it; because it’s language we’ve been growing up with ever since we left school. It’s only when you start checking people’s understanding that you realise how limited it is. And why should it be any different? I’m just the same when my accountant is talking to me, or the plumber comes along to tell me how my boiler’s doing,” he says.
A moment of clarity came for Kramer while talking to the practice’s IT technician. “I come in to my room at the surgery and he’s sitting in my chair. Ray. He’s fixing the computer. We kind of play this game. I sit down in the patient’s seat, so he’s in the seat of authority and I’m the patient, and we kind of role play. I say, ‘Doc, give me the bad news’, and then he starts to tell me what’s he’s done to the computer. ‘I’ve had to reboot the SQL server, I’ve had to update your programme files, and back it onto the hard drive’, and the thing is I sit there and I nod and go ‘yeah, yeah… uh-huh. That’s really good’, because I’m too polite to say I don’t understand a word you’re saying. And too ashamed to admit I don’t know!”
It is therefore up to the expert in this situation to enable understanding, and this is a core aspect of the action plan. Clinicians will be encouraged to check understanding to build a continuity of relationship. “Not just ‘do you understand what I’ve said’, but ‘can you tell me back what you’ve picked up?’, ‘what are you going away with?’” says Kramer.
Small conversation guidelines are a start, but the interface requires further change, Making it Easy suggests. Studies at Edinburgh’s Western General led by psychologist Belinda Hacking where a person was assigned to help someone navigate through specialist cancer consultations were a good example of improving productivity, according to Kramer. “People were coming in to see a specialist to discuss a management plan for their newly diagnosed cancer and expected to make a shared decision on what treatment would best suit them, and they realised people were not in a position to make a decision that would best meet their needs,” he says.
In the randomly controlled trial, the navigator would meet with the patient before the consultation to discuss what was important for them and talk through treatment options. With all sides better informed, all three would then be present at the consultation which would be recorded so the patient could review it with their family. “The outcome was those people who had had that level of input made decisions which suited them, and were often less invasive decisions, less costly measures, and most importantly, they were happier because they had less decision regret. I think that’s a really good example of how we can maybe improve the productivity of these situations. Preparation, and backing it up afterwards,” says Kramer.
The action plan therefore feeds directly into the person-centred agenda.
“It’s not just our ability to communicate with our patients, it’s also enhancing and enabling the patient’s ability to communicate with us. The greatest challenge is not tackling poor health literacy in patients, but addressing the lay literacy of healthcare professionals,” says Kramer.
It also feeds into health inequalities. “People with poor health literacy levels tend to have the poorest health, and ill-health then makes them socially isolated. They can’t connect with the workforce, and it’s a vicious circle.”
Is the concept of self-management too ambitious at this stage, then, expecting people with complex care needs to make informed decisions without the awareness and literacy? “I think self-management is a bit of a misnomer because, you know, we’re not asking people to do it themselves. It’s how we support self-management that’s the key thing. It’s enabling people,” says Kramer.
To do that, however, Kramer believes the system needs to change, rather than the user. “Fundamental to that is the word ‘engagement’, really, and it’s how we make things more engaging.”
He points to the example of computer literacy. “Thirty years ago, IBM had the first home computer, and none of us would have wanted one. We would have been fearful: ‘what can this do for me? It’s too complicated, you know, coded in a foreign language’. What the computer industry could have done is sent us all off to structured education classes in how to use it, given us information leaflets on how to use it. But what they did is they made it simpler and more engaging to use.”
The benefits now are clear to see, he argues. “Now we have five and 85 year olds with a tablet doing incredibly complex things. The other thing is they want to engage with it as well. The challenge I suppose, really, is how can we make the whole health and social care interface more engaging, and that’s perhaps at the heart of what the person-centred care programme is all about.”