I joined the Community Health and Learning Foundation (CHLF) in 2012 as Director. Previously the CHLF’s Health Literacy work had been carried out by the national charity, ContinYou. My own background has always been in the field of enabling people and communities to make informed decisions about their health and wellbeing, as well as supporting them to navigate the healthcare system. I was privileged while at ContinYou to work with the Department of Health and the Department for Business, Innovation and Skills to develop the only national Health Literacy course, Skilled for Health.
Initially, when CHLF ‘span out’ of ContinYou to become an independent, national Community Interest Company it was envisaged that rolling out and delivering Skilled for Health (SfH) in deprived communities would be our prime focus. However, we very soon recognised that a wider vision was required. This has resulted in us setting ourselves the ambition to be the UK’s leading Health Literacy organisation which exists to create a Health Literate Health and Social Care system and supports the reduction of health inequalities. In order to achieve this, as well as delivering SfH, we now also:-
- Develop tailored programmes aimed at people who have lower levels of health literacy – a lot of this work has been in the Early Years arena.
- Train health and care practitioners about the impacts of lower health literacy on patients and service users.
- Test health information on people with lower health literacy to see what they do and do not understand, and make recommendations for changes to the information.
The latter work is likely to be of most interest to PiF members and I will give some examples later. In addition, we lobby policy makers and opinion formers to help them understand the importance of health literacy. Post-election we will be asking the new government to develop a health literacy policy and strategy for England. For an example of our policy work please visit: http://www.chlfoundation.org.uk/pdf/Health_literacy_policy_briefingMay14.pdf.
Whatever the arena, the principle is always the same – we want to ensure that people with lower levels of health literacy have the same opportunities to make informed choices about their health and wellbeing as the rest of the population. In fact we are passionate about this because the most recent research carried out, in England, tells us that 43% of the working age population do not effectively understand and use health information. This rises to 61 per cent if numeracy skills are required to aid comprehension. If anyone asks me why health literacy is important these are the statistics that I quote. I also add that it means that I spent a lot of time, when I worked in the NHS, developing information that a lot of the people I was targeting didn’t understand!! In reality, this mismatch often means that people may not understand basic navigational issues (time and place of appointment) and very complex treatment issues (how to choose between procedure X and procedure Y).
Our role is often to be the conduit between information provider and intended recipient. We do this by consulting with people with lower health literacy on behalf of organisations who wish to User Test their information – usually prior to developing new resources or when they are revising existing ones. Our participants are usually people that we are already working with or clients of organisations that we work with. Our experience has shown us a Focus Group approach is the best way of obtaining feedback. The group environment seems to spark discussion and people are genuinely pleased to be asked for their views as they are not very often consulted with over anything that affects their lives.
Their feedback is always useful and remarkably consistent in certain respects, ie avoid medical jargon, avoid words of multiple meaning, avoid numbers and personalise it. In addition, the organisations we work tell us that when we let them have the focus group feedback they are confident that if they amend their information to take account of the feedback, they can be assured that their information will be universally accessible. It also gives us huge satisfaction when we see information that has been simplified, and made easier to understand, as a result of feedback from our focus group work.
We have worked closely with the Patient Information Forum (PiF) during our time as ContinYou and now as CHLF. Our organisations share common values and put patients and service users at the heart of all activities. We joined PiF for a number of reasons. Membership gives us the ability to share our learnings and experience, but also to learn from the range of organisations that are also members, to receive the excellent Friday briefings which keep us up to date and the chance to benefit from the networking involved in attending events. We were also delighted to be asked to speak at the recent Executive Circle and to host an Interactive Shared Learning Zone at the upcoming annual conference in July 2015.