I’m the Head of Information Services at the MS Society. It’s an absolutely brilliant job because I know that there are things my team and I do, every day, to make reliable information available to the whole MS community – people with MS, their families, friends, carers, employers and care teams. I think that information and access to that information, has incredible power. What a way to spend your day!
The MS Society offers information using all the channels you’d expect from a national information support service:
* in our publications;
* on our website, forums and social media pages;
* in response to phone and email enquiries;
* through volunteers in our branch networks and information points around the country;
* via our physical and online library services, and;
* using events, large and small, held around the UK.
Some of our information giving is through fairly formal route,– like our publications and website – and some are far more informal – the conversations that happen in the lunch time at information events or via social media. This varied approach to information giving is one of the things I enjoy most about our work. I like the idea that, however people want it, however it makes sense to them, they can access information of the same quality, drawn from the same sources, and serving that same empowering function..
Using both of these – formal and informal means – allows us to create our own picture of the information that’s relevant to us. Personally, alongside a seemingly unquenchable thirst for knowledge, I have always had great faith in the power of stories. I am more and more convinced that people’s experiences are the perfect accompaniment to accurate, up-to-date, balanced information.
I haven’t always applied this thinking to health though. In fact, my path into health information is probably one you won’t read about much on the PiF pages, chiefly because some of it takes place in Central Australia.
My first (and by far most adventurous) editing job was in Central Australia at Australia’s oldest Indigenous publishing house. There, amongst other things, I worked on a series of first language literacy resources – literacy is, I think, one of the greatest tools you can have in the pursuit of knowledge and there are far, far too many Australians without it.
In my role then, as an editor, I was aware that I carried an incredible responsibility: to act as an intermediary, helping transfer knowledge between those who have it and everyone else who needs or can benefit from it. It’s a position of privilege, being an editor: you have access to learnings untold and, if you’re lucky and skilled and given an opportunity to hear back, the gift of empowering others by sharing those. Because it’s true – knowledge is power – and working each day to share that is a wonderful thing to do.
It wasn’t until several years and several continents later that I first started working with health information. I took a short contract managing publications at Mind and was hooked. What’s not to love about creating and sharing information to let people take better care of their health and wellbeing?
People with MS, for example, are most commonly diagnosed between 20 and 40. They have whole lives still to live, and their thirst for information on how they can best to do that is humbling. We have thousands of calls and information requests every month and it’s a pleasure to interact with such a curious and knowledgeable community. The feedback we get – at events, about publications, in response to enquiries, etc – about how people have used and shared information and support to address difficulties or make changes in their lives is truly moving.
Having knowledge and information about our health and the conditions which affect us helps us ask questions – of ourselves, or others – and make choices. The way we engage with health services and our sense of ownership over our own wellbeing are changing. I think more and more we’re being asked to take a more active, partnership role in managing our health. And, to do that, we need all the things I’ve talked about already: knowledge, information, and the tools to acquire and use it.
PiF, and the opportunities it gives us to share amongst a professional community how best to do this, is resource we should all treasure. All of us working to empower people to better care for themselves through information have a vital role to play in this changing environment. It’s exciting, it’s challenging, and I’m thrilled to be amongst it.