Last month, I was one of the guest speakers at the Patient Information Forum conference talking about our experiences of Involving Users in Developing Health Information. Professor Theo Raynor, University of Leeds and Luto Research, set the context for the day and his presentation addressed how involving users is not just the right thing to do – it makes a real difference; and how ‘expert’ patients and ‘real’ patients both have a role to play in developing good information.
Trishna Bharadia, who was diagnosed with multiple sclerosis in 2008 and has since become an award-winning advocate, talked about her experiences of accessing health information and being involved in the development of health information from a patient’s perspective. In particular she gave an example of a case study on developing a Living Well With MS course for Sue Ryder in Nettlebed.
I spoke about how MS-UK uses a number of methods to engage with our clients. For example, our Virtual Insight Panel (VIP) helps us to review our Choices leaflets and our clients also provide us with real life quotes to bring these resources alive. We also consult with our VIP’s on other organisational decisions to ensure that we are listening to the voices of those that are affected by MS and using them to inform our work.
Earlier this year we also set up a Steering Group for our wellness centre, Josephs Court in Colchester, Essex. This group is made up of seven clients who volunteer their time every other month to meet us. These meetings enable us to consult with them about our plans, listen to their ideas and those of the clients of Joseph Court who they represent.
Overall, the key message I came away with from the conference with was that MS-UK needs to introduce a face to face user testing group to further improve the way we develop and produce our Choices leaflets. I am certainly excited about how we can incorporate this into our processes and continue to demonstrate our commitment to our mission and values which include providing high-quality, accessible and relevant information.
If you would like to join our VIP, register your interest at www.ms-uk.org/vip.
Diana Baxter, Head of Services