43 percent of working-age adults will struggle to understand instructions to calculate a childhood paracetamol dose. Widespread low health literacy is a key reason why. Patient support consultancy Anatomy Health interviewed Blythe Robertson, Policy Manager for the Scottish Government to discuss how tackling health literacy has been at the core of NHS Scotland’s work to better serve patients, and what pharma can do to help create a more ‘health literate’ healthcare system and services

When did you first become interested in health literacy and why?

I was working on information governance with health technology systems within government. We were updating guidance on data protection and consent for information sharing. At the time, there was a ‘defensive’ approach to data protection - that is, keeping people out of jail by keeping on the right side of regulation! But I developed the point of view of the need to make things more understandable to people and be more proactive in trying to improve outcomes by introducing governance and frameworks that people can actually understand.

The logic at the heart of this was that if people were clear about what they were being asked to do, and got a sense of actually being involved in decision making, they were much more likely to engage and do the ‘thing’.

I was trying to get this set of principles across to people and came across the work of the health literacy team and their first Making It Easy action plan, and it became clear that what I was trying to do was come up with a ‘health literate’ approach to data consent frameworks and communications. It got me interested in taking my world view and approach not to just one aspect of the system (data protection) but across the whole health system. So I applied to the team, got the job and became responsible for helping to implement the action plan.

Is health literacy simply about individual patient ‘deficit’?

Our approach to the issue of health literacy certainly doesn’t come from that perspective. Our approach is really summarised in two pictures that feature in the first action plan.

The front cover features a picture of a person confronted with a hurdle, which represents the experience that we all tend to have when we’re coming into the healthcare system: barriers are placed by a suboptimally designed system. And our response historically has been all about patient deficit and to educate people to jump the hurdles.

But this nation of expert hurdlers hasn’t emerged.

Our back cover picture shows people within the system coming together to remove the hurdle and allow people to walk unimpeded along the care pathway. The system has to take some responsibility for the poor design and poor decisions that it’s made in terms of barriers that it’s presented. We see it all the way through the system, from the health information design level to the design of hospitals and other healthcare settings.

It’s important to say that it’s not about making things easier for a small group of disadvantaged or lower health literate people, but a universal precautions principle to make the system and the components within it work for everybody.

Why should anyone working in health be interested in health literacy?

The great preoccupation - rightly so - is about improving the interaction between patient and practitioners - how can we make that as productive as we can. What lots of global policy is about is improving that interaction.

How do we improve that interaction? By making things easier to understand. And that’s absolutely fundamental to health literacy.

And I think an additional aspect to a definition around health literacy is about reducing people’s anxiety when they come into healthcare systems. Think about a hypothetical but not unrealistic experience coming into a hospital: being given an appointment for ‘x’ at time ‘y’ but without knowing much more about the surroundings you will be faced with when you get there. Parking 20 minutes away from the hospital front door. Before you even get to the hospital reception you might already feel a bit anxious about being late because you didn’t realise how far you would need to walk. Then you get to the reception, only minutes till your appointment, and the information about your clinic in your letter doesn’t match exactly what they have at reception (we know from experience this happens).

You finally find the clinic and go into a conversation that is often going to be a high anxiety experience anyway - your anxiety levels are going to be through the roof because you’ve had a terrible experience coming into the healthcare system.

We know that highly articulate and high health literate people only take in about half of a conversation anyway. A couple of days later you probably remember about half of that. Add in the multiplier of how anxious you are coming into those conversations - what are you realistically going to get from the conversation? What is your ability to take part in a shared decision about your care?

Anybody working in the healthcare system can recognise that those experiences are routine. And improved levels of health literacy across the design of the hospital, across the type of information your provide to people prior to and after they come into the healthcare system - these are areas that you can cumulatively improve to reduce anxiety, and make the patient/practitioner conversation as productive as possible.

How is health literacy being tackled within NHS Scotland?

The Scottish Government has published two action plans now. The first focussed on primarily on shining a light on health literacy and raising it as an issue with people in the healthcare system, and promoting tools and techniques to help respond to the health literacy challenge such as Teach Back.

We also built the Health Literacy Place online platform, which brings together the evidence and case studies on health literacy, including some ‘demonstrator’ work by NHS Tayside which tackled some specific health literacy issues to do with people coming into and leaving the healthcare system, such as improving materials around preparing for appointments.

When we were concluding the demonstrator work in Tayside, we started thinking of a new action plan to build on what we’d learnt. This was published in November 2017. In going back to various stakeholders and constituent groups, we broadened out the discussion regarding our new context both in terms of integrated world health and social care but also the areas where people are seeking health information. For example, library services, where 40 million people interact - more than those who go to see Scottish premiership football or go to the cinema combined!

We know that a quarter of libraries are providing health information - that’s a huge number of people going into the wider system (i.e. not the health and care system) - and lots of the traditional target populations for public health interventions: little kids, mothers and fathers of little kids, homeless people, etc. In the spirit of going to where people are, there’s a huge emerging role of library services.

We have four action areas in the plan:

  1. Actively sharing what we’ve already learnt from our work to ensure the assets and the spirit of the first plan are continued
  2. Embed what we’ve learnt in particular parts of the healthcare system. So if we have good evidence for interventions in the hospital setting, how do we translate them into GP practices?
  3. Develop more health literate responsive organisations. Again, taking away from this patient deficit idea and working out what a ‘health literate’ organisation looks like. That’s a big piece of work, and we’re keen to promote this idea of health literate organisations
  4. Getting health literacy out of existence by simply designing health services in ways that are more responsive to people’s abilities. This includes lots of different facets, from information design to physical design of spaces.

What role does the pharmaceutical industry have in helping to tackle and respond to health literacy?

Fundamentally, if you want people to adhere to their medicines regimes and feel more empowered to lead healthy lifestyles, you need to have information that is aligned with and responsive to their needs.

Simply improving information about medicines that people are taking is fundamental. We had a great ‘terrible’ example of a colleague who was given a prescription with packaging design that showed two tablets. She took the picture to mean that the dosage was two tablets, when in fact it was one, and taking two over the period she was taking the medicine could have been very dangerous.

That’s a classic example of the road to hell being paved with good intentions - you can see the thought process of having a picture of the tablets, and being able to see it from all angles, but that person could have ended up in a very sorry state if she hadn’t worked out the correct dose.

I’ve presented to pharma before, and the reaction was great - many came saying that they had a responsibility to make patient information better. People recognise that they need to do things better as it can help people take their product appropriately. The role of clear information, whether just the leaflet that comes with the box, or the way that medicines are explained to patients by the practitioner, is fundamental to good health.

This isn’t a Scottish issue, or a UK issue, but a global level issue. We need to work collaboratively at as big a scale as we can.

A pharma organisation can and should aim to be a health literate organisation. Organisations that have a role to play in maintaining good health have to embrace these principles. The pharma industry is fundamental to that. I’m certainly not saying particular organisations are inherently bad at this - there’s lots of good out there - there’s just this sense of how we work together and improve together, and address weaknesses across the system when we can.

The opinions offered in this interview are Blythe Robertson’s own. To find out more information on health literacy please visit the Health Literacy Place website or contact Jamie Begbie, senior policy officer, healthcare quality and improvement, Scottish Government, on jamie.begbie@gov.scot.

Interview carried out by Oliver Childs, health information director of patient support consultancy Anatomy Health.