By the time you reach my age (42 – and a half, as my children remind me emphatically), you’ve probably had a fairly wide range of patient experiences. Even if you have enjoyed good health, you may have had a baby, sought help to stop smoking or accompanied friends or family members to appointments. In the past five years I’ve had more contact with healthcare than I care to recall, and most of those experiences have been positive. But where things haven’t been so good, it’s been interesting to reflect on what could be done better, and I often come up with the same answer: communication.
Being a professional communicator, you could say I’m biased. I’ve spent 20 years thinking about how to put words together in a way that will engage the person reading them. My background in social anthropology makes me particularly interested in developing materials that really resonate with the reader. That means finding out a bit about who they are and what they need, to get the tone and language just right. I also interview patients to draw out their experience in a way that helps them feel supported, to ensure that their voice comes through.
So, health information is what I’m really interested in, and I’m glad that I discovered the Patient Information Forum when I did. It tackles the very questions I’m already mulling over, and I always come away from events with useful new ideas and connections.
This is important when you work for yourself, as it’s up to you to keep your skills and knowledge up to date. I’ve been freelance for 15 years now, and I love the variety. I’ve written factsheets and magazine features for charities like Alzheimer’s Society, the National Autistic Society and Arthritis Care. Other clients include NHS providers, professional bodies and thinktanks like the Health Foundation. I also worked inhouse at The King’s Fund for several years, on materials ranging from the PoPPi Guide (Practicalities of Producing Patient Information), by our very own Mark Duman back in 2003 to, most recently, the Experience-Based Co-Design Toolkit (launched this month at the Transforming Patient Experience conference).
Much of my work involves finding the right way to say things. This presents an inherent challenge in the healthcare context. When a patient enters a healthcare system, they find themselves in an alien world, with unfamiliar processes, space-age equipment, and a foreign language. Like legal language, clinical language is, by necessity, specific, unemotional and technical. There is great value in this: it provides a universal code that ensures accuracy and clarity within professional interactions. However, as information producers, our task is to shape, adapt and tailor these messages to meet people’s needs. At the point they receive our information, will they feel frightened, disengaged, confused, despairing? Without knowing this and responding to it, we cannot hope for our materials to hit the spot.
So how do we find this out? Well, we could guess, or glean what we can from past feedback. But the best way is to ask the patients. One of my all-time favourite commissions was Having a Premature Baby, published by Tommy’s. The brief was to write a book that would meet the Department of Health Information Standards while reading like a magazine. The content was guided by two steering groups – one, of healthcare professionals and another, of women who had themselves had premature babies. Our indepth interviews found that as well as accessible medical information, women wanted practical tips such as what to bring to the neonatal unit and how to cope with anxiety. The book was awarded runner-up BMA Patient Information Resource of 2012.
Of course, many providers lack the resources for this level of engagement. But even just a few phone calls can bring a resource to life. When patients share their experiences, they tell us not just about their symptoms, but how these affect their daily life and how this makes them feel. Crucially, they also share ways they have found of coping, both practically and emotionally. And the very presence of their voices in a resource helps others know that they are not alone.
It’s easy to think of writing as a solitary exercise. But if we really want to communicate, we need to get out there and have conversations with our readers. Then, in turn, we can use what we learn to ensure that our materials truly speak to them.