Storytelling: the power of patient engagement

So, what kind of reader are you?  Maybe you’re the dedicated type who can’t go a day without picking up a book (or Kindle) or perhaps you’re a more relaxed reader who dips in and out when you have some spare time.  With busy schedules and so much to catch up on the digi box, we can sometimes forget the inspirational power of a good story.

Remember the good old days when you’d fall asleep listening to your favourite story? Growing up, I was introduced to countless fictional characters; characters I loved, hated, feared or even aspired to be like. As a young, freckle-faced girl I was continually drawn to princesses with glossy hair and sparkly shoes, who were whisked off their feet by a handsome prince and married into a life free of work and daily chore. Nowadays, I’m drawn to characters with more depth, people I can relate to.  A good story has the power to help us escape to another world, teach us things we didn’t know and can even shape our behaviour and outlook, as they directly involve us, bringing us into the inner narrative.

Storytelling can also be a powerful tool for engaging patients, encouraging them to think about their behaviour and make important healthcare decisions. Sometimes the simplest way to inspire and support patients is by sharing the experiences of others.

At various stages of a patient’s journey they may face uncertainty, confusion, sadness or anger. Counseling booklets, websites and face-to-face interactions with clinicians can all offer advice, but it is the truthful account from a fellow patient that delivers the greatest insight and comfort. Stories spoken from experience reflect a patient’s real concerns and barriers, and can offer personal advice to overcome them.

There are many ways that stories can be communicated to others. Video diaries offer a snap shot into a patient’s personal environment, a taste of their daily routine and how a condition impacts their quality of life. Personal letters allow patients to interact, share stories and questions with each other. Receiving a letter can feel like a hand of friendship and allows patients not to feel isolated in their experience. Extracts from a patient diary can translate the ups and downs experienced day to day; a truthful account of their achievements, set backs and emotional differences.

Creative stories can also be used to translate medical information to children, in a way that patient leaflets can’t. Stories make the subject matter more accessible, narrated by fictional characters that share the same experiences and communicate difficult or intimidating information in a fun and interactive way.

A personal story can provide the encouragement needed to make a difficult decision, ignite an action that was deemed impossible or stimulate the confidence to step outside a comfort zone. Author Philip Pullman once said “True stories are…nutritious and sustaining. They feed the mind with information and the heart with hope and strength”.

To celebrate national story telling week, we implore patients to share their stories and impact the lives of others through narrative therapy, and encourage information providers to consider the power of a good story in supporting patients.

The end.

Lisa Simms, Senior Account Executive, HealthEd

 

You CAN put a price on patient education

If there’s one question that we get asked more than any other from clients it is ‘What will be my return on investment?’, and rightly so. Pharmaceutical companies and patient support organisations often invest a huge amount of their time and money in a particular project and want to know what they will get in return. So at HealthEd we feel it’s our duty, as a respectable health education agency, to provide the most accurate prediction we can.

Return on Education™
Last year HealthEd developed a bespoke framework for measuring the effectiveness of healthcare education programmes, which measures not only the return on investment (ROI) of programmes but also the educational impact: did participants learn what they needed to and did their behaviour change as a result? It is called ‘Return on Education™’ (ROE) and it contains measures across four board parameters: educational impact, desired action, business impact and patient outcomes. [Note: This is a rather simplistic explanation – it is in fact a very thorough, informative and valuable tool].

In July 2011, one of our US colleagues, Susan Collins, presented ‘Return on Education‘ with Susan LaRue of Amylin Pharmaceuticals at the ExL Digital Pharma West event. The presentation illustrates how ROE was used to measure the ‘return’ of a patient support programme for a new diabetes product. The results were remarkable.

But that’s only in the US
Here in the UK, we thought the presentation was a fantastic opportunity to illustrate our ROE framework in action and directed many of our clients to it. We were surprised by the response. Instead of sending congratulatory messages (and commenting on how clever we were!) one of the most common responses was, ‘That’s in the US, it doesn’t apply to Europe or the UK’. For once I was silenced. Although I knew this was a broad and flawed statement I didn’t have any evidence to back it up as we haven’t implemented and measured the same programme in Europe.

However, the more I have studied the measurement outcomes, the more I realise that ROI (which is only one of approximately 30 measures in the ROE framework) is the only non-directly transferrable result (due to drug reimbursement structures in the US). How individuals are motivated, how they internalise knowledge and how behaviour change occurs, are universal. Our previous blog reminded us of behaviour change models – universities across the world teach the same models! Additionally, patient outcomes are measured in the same way wherever you are. Are symptoms relieved? What are the resulting functional and/or disease measurements – have they changed from previous measurements? Are there fewer hospital admissions?

From a business perspective, pharmaceutical companies want to know if education has resulted in increased prescribing and sales. And although there are some variable organisational barriers, such as formularies and NICE approval, how marketing and sales occur across the pond is very similar to here.

So next time someone shows you a successful example from the US, look twice. The US market leads the European market in understanding patients as stakeholders in their own care, their patients and healthcare professionals’ brains and bodies work in a very similar way to our own. And even if there are occasionally missing ‘Us’ and too many ‘Zs’ in their writing there are far more commonalities than differences between us.

Cally Clarkson, Director – Strategy, HealthEd Ltd

It’s the same every year!

It’s January 6th and chances are, if you’ve made a New Year’s resolution, you might already be doubting whether you’ll be able to stick it.  The fact is, despite best intentions, New Year’s resolutions have only a slim chance of being successful. Roughly half the population make resolutions and around 80% of them fail.  But why is this?

Fail to prepare, prepare to fail
Perhaps the very premise of a New Year’s resolution is flawed. Why wait until the start of a new year to make a change if it is worth making straight away? Or maybe we set ourselves challenges that are either too specific (and too hard!)…I will lose two stone in a month….or not specific enough…I will eat healthily and exercise more (more than what?). Or perhaps we make resolutions on a whim, rather than thinking carefully about the impact they will have on our lives.  On the other hand, maybe some of us do too much thinking. Have you ever spent so much time and energy concentrating on the planning of something that you run out of steam by the time you come to actually doing it?

Why are patients different?
As healthcare providers, we often ask patients to make huge changes to how they live their lives and in a lot of cases failure isn’t an option. Failure can lead to poorer health or in some cases can even put their lives in danger. So how can we help support patients in making that change and giving them the best chance of success?

Applying behavioural change theory can help healthcare providers understand how to support patients in making real long-term changes.  However, it’s not a simple case of applying one theory and expecting it to work in all scenarios.  The nature of the change or challenge might mean that one theory is more suitable than another.  For example, adopting a new behaviour like learning to inject a daily medication might require the use of a different behavioural change theory than say stopping smoking.  The US National Cancer Institute provides a good summary of the different leading behavioural change theories, in the document ‘Theory at a Glance’.

In 2006 NICE carried out a review on the use of a number of leading behavioural change theories looking at where each could be used most appropriately.  Not surprisingly, NICE didn’t conclude that one theory is overall ‘better’ than others, but did look at where different theories had been applied most effectively.

This is something that fascinates me, and well, most of us here at HealthEd, and we’re going to be exploring this more during 2012, so watch this space.

Joanne Fearnhead-Wymbs, Account Manager , HealthEd Ltd

References
National Cancer Institute. Theory at a glance. A guide for promotion practice. 2nd edition. Spring 2005
Taylor D, Bury M, Campling N, et al on behalf of the National Institute for Health and Clinical Excellence. A review of the Health Belief Model (HBM), the Theory of Reasoned Action (TRA), the Theory of Planned Behaviour (TPB) and the Trans-Theoretical Model (TTM) to study and predict health related behaviour change. June 2006

Merry Christmas and a happy New Year

How health literate is Europe?

In our last blog we discussed the need for greater awareness around health literacy, touched upon literacy levels in the UK and Europe and introduced the European Health Literacy survey.

Shortly after this blog was posted the initial results from the survey were published, bringing us one step closer to understanding the true health literacy levels of people in Europe.

A brief history of the study
Unlike in the US, where health literacy has been high on the agenda for some time, little is known about the true health literacy levels of people in Europe. So, back in 2009 the European Health Literacy Project, hosted by Maastricht University in the Netherlands, began developing and testing ways to accurately measure the health literacy levels of individuals across Europe. In July 2011 the final survey was conducted across eight European countries – Austria, Bulgaria, Germany, Greece, Ireland, the Netherlands, Poland and Spain – and involved around 1000 participants aged 15 years plus, from all walks of life.

Each participant was required to answer 47 questions designed to assess health literacy in three key areas: health care, disease prevention and health promotion, as well as assessing overall health literacy. A combination of self-assessment questions and the Newest Vital Sign test (where participants were asked questions based on an imaginary ice-cream nutrition label) were used. You can have a go at some of the questions from the survey on the European Health Literacy conference website.

The results
A wealth of data has come out of the study; too much to go through in detail here. But I’ll try and summarise some of the main findings.

• Overall health literacy levels were poor or potentially problematic in around 45% of the participants
  • 12% of people had inadequate health literacy levels, and a further 35% had problematic health literacy, as measured with self-assessment questions
  • 21% had a high likelihood of limited literacy and 23% possible limited literacy, as measured with the Newest Vital Sign test
• The study also found that there were correlations between poor health literacy and:
  • Lower level of education
  • Increased age (study only included >15 years)
  • Lower social status
  • Higher financial deprivation
  • Poor health

A full publication of the results is due to be published in Spring 2012.

The future
Although only eight countries were involved in the study, I think these results give a good indication about the current state of health literacy across the whole of Europe. Hopefully these results will provide the much needed data to drive policy and practice, and tackle the obvious inequalities in health literacy, from a national level.

With these results in mind it is essential that as healthcare information providers we produce patient information with improved readability, navigability and user friendliness, which is accessible to all.

Kerren Davenport, Head of Editorial, HealthEd Ltd

References
European Health Literacy Group. State of play of health literacy – Main findings of the first health literacy survey in Europe. Available online: http://inthealth.eu/research/health-literacy-hls-eu/
Weiss BD, et al. Quick assessment of literacy in primary care: the Newest Vital Sign. Ann Dam Med 2005;3:514–22

Health literacy – what’s it all about?

The following was recently reported in a scientific journal:¹

‘We propose and demonstrate that the nuclear spins of the host lattice in GaAs double quantum dots can be polarized in either of two opposite directions, parallel or antiparallel to an external magnetic field.’

To a quantum physicist this all makes perfect sense but it’s probably complete gobbledygook to you and I because we are not experts in quantum physics. Yet everyday patients are exposed to equally baffling medical jargon that they are expected to understand, because the people who produce the healthcare information do. This is where health literacy comes in.

What is health literacy?
Health literacy is the ability to read, understand and act on healthcare information.²

Although not a new phenomenon – health literacy has been part of the US government’s health strategy for over a decade³ – it is only relatively recently that health literacy has began appearing on the radar of healthcare professionals, pharmaceutical companies, and government and patient organisations in the UK and Europe. In the UK, the Department of Health partly funds the Health Literacy Group UK (established in 2007), which aims to raise awareness of health literacy as a remediable cause of health inequalities. Health literacy is also high on the agenda of the Patient Information Forum, a not-for-profit organisation raising awareness of patient-centred care and the production of high quality health information.

Why is health literacy important?
There are many studies documenting the association between low health literacy and poor health outcomes. This includes lower adherence to medications, greater number of hospitalisations and poorer uptake of screening programmes.^4,5,6,7 For example, a study by Schillinger et al showed that inadequate health literacy led to poor glycaemic control and higher rates of retinopathy in patients with type 2 diabetes.⁶  In patients with heart failure, a study by Peterson et al showed that a low level of health literacy was significantly associated with a higher all-cause mortality.⁷

Size of the problem
Worryingly, figures suggest that literacy and health literacy levels are startlingly low. Almost 50% of adults in the UK, Europe and the US read below the level expected of a 13-year-old.⁸ Another figure suggests that over half of England’s adult population have literacy skills below the level needed to discuss a condition interactively with a healthcare provider.⁹  

The European Health Literacy Survey, aims to measure health literacy levels in a number of European countries and cultures, illustrating the growing importance of health literacy in Europe.

Given the well-documented consequences of poor health literacy surely this is a problem that cannot be ignored.

Providing solutions
So what is the solution to high levels of low health literacy?

It is unlikely that everyone within a population will become ‘health literate’ overnight.  Instead it is the job of information providers, like ourselves, to ensure that health education materials are accessible to a wide audience. We have a duty to ensure that all the materials we produce are health literate. This means adhering to certain principles for content and layout, as well as understanding the needs and views of end users.

At HealthEd we ensure all our patient education materials adhere to health literacy principles not just for content but also design. We tailor our materials according to both the format and target audience. We also ensure that the information we produce is appropriate for the target audience by incorporating a vigorous needs assessment process both before and during a project.

If you would like more information about health literacy our American colleagues at HealthEd US, have developed a quiz highlighting the importance of health literacy and providing tips on how to present health information the majority can understand.

Joanne Parker, Medical Writer, HealthEd Europe 

References
1. Takahashi R, et al. Voltage-Selective Bidirectional Polarization and Coherent Rotation of Nuclear Spins in Quantum Dots. Phys Rev Lett 2011 107:026602
2. Center for Health Care Strategies, Inc. What is health literacy? Available at: http://www.chcs.org/usr_doc/Health_Literacy_Fact_Sheets.pdf (accessed November 2011)
3. National Institutes of Health. Health literacy. Available at: http://www.nih.gov/clearcommunication/healthliteracy.htm (accessed November 2011)
4. BMJ Group Blogs. Ana Rita Pedro on health literacy in Europe. 2010. Available at: http://blogs.bmj.com/bmj/2010/10/19/ana-rita-pedro-on-health-literacy-in-europe/# (accessed February 2011)
5. Berkman ND, et al. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 2011;155:97–107
6. Schillinger D, et al. Association of health literacy with diabetes outcomes. JAMA 2002;288:475–82
7. Peterson PN, et al. Health literacy and outcomes among patients with heart failure. JAMA 2011;305:1695–1701
8. Kirsch IS, Jungeblut A, Jenkins L, et al. Executive summary of adult literacy in America: A first look at the results of the National Adult Literacy Survey. Available at: http://nces.ed.gov/naal/resources/execsumm.asp (accessed November 2011)
9. von Wagner C, Knight K, Steptoe A, et al. Functional health literacy and health promoting behaviour in a national sample of British adults. J Epidemiol Community Health 2007;61:1086–90

Welcome to our blog

Hello and welcome to the first entry of our new and improved blog, which we hope you will find interesting, useful and entertaining.

For those of you who don’t already know us, HealthEd is a patient-centred health education company with offices in both the UK and US. We work closely with clients and end-users (whether that’s patients, carers, healthcare professionals or internal staff) to deliver a plethora of health education materials. As you follow our blog you will hopefully discover just how committed we are to ensuring that our focus is always the patient, whatever age, race, sex or walk of life they come from.

We’re also award winning. At the recent BMA Patient Information Awards we received a Highly Commended Award for a patient handbook entitled: Understanding Pulmonary Hypertension – Information for patients. A few weeks later we were awarded gold in the Patient Education Portal Website category of the Web Health Awards for the website www.phassociation.uk.com. For more information on these award winning educational materials and to find out what Iain Armstrong, Chairman of the Pulmonary Hypertension Association, had to say about them, click on the award logos on our website.

And of course if there is anything else you to know about us take a look at our website or pick up the phone and give us a call (01565 759550).

The aim of our blog is to provide you with an insight into the mind of HealthEd – what makes us tick and drives our ideas forward. You will also get to know a little bit more about each of the members of the team as we blog on topics that inspire and motivate us as individuals to produce materials that in turn inspire and motivate patients and healthcare professionals. Topics such as: engaging patients and inspiring behaviour change, social research methods, using in-depth stakeholder insights to drive and meet objectives, and using technology to effectively communicate with patients, carers and healthcare professionals. If these are the kind of things that interest you then click on the ‘follow’ button now.