PIF was delighted to hold an event on Involving Users in Developing Health Information, on Wednesday 17 May 2017, in London.
70 people attended the event, which shared practical case studies and learning, and supported participants to consider:
- Understanding user needs
- How to involve users at each step of information resource development
- How to involve disadvantaged groups, and/or go beyond talking to the most engaged users
- Taking a co-production approach
- Different methods for engaging and seeking feedback from users
Agenda and Presentations
- A taxi from Bridlington - lessons from people with heart failure Professor Theo Raynor Professor of Pharmacy Practice, Leeds University; Co-Founder and Academic Advisor, Luto
Theo set the context for the event, sharing recent work using Experience Based Co-Design (EBCD) in the development of information for people with heart failure. His presentation will address 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.
- From a patient’s perspective Trishna Bharadia MS campaigner and expert patient
Trishna shared her experiences of accessing health information and being involved in the development of patient related services.
- Listening to young women's voices Kate Brian, Women’s Voices Lead, Royal College of Obstetricians and Gynaecologists
Kate shared the RCOG’s experiences of engaging young women in their work, to find out what they need to know and how to best get that information to them.
- Consulting black, Asian and minority ethnic (BAME) communities about their information needs Claire Lucas, Information Services Manager, Alzheimer’s Research UK
Claire shared an Alzheimer's Research UK project that is seeking to understand what health information will be useful and relevant to BAME communities, including: focus groups – methodology, hurdles, limitations, results; iterative process of resource development and testing; progress to date and next steps.
- Social media and online communities to understand user needs Deborah Wyatt, Director, talkhealth Partnership
Deborah will explore: what benefits can social media and online communities offer to patients and healthcare organisations; how can you identify the best communities to listen to and engage with; and what tools can you use to listen, engage and measure?
- Groundswell’s approach to involving people experiencing homelessness Kate Bowgett, Director of Advocacy, Groundswell
Groundswell is a charity that delivers a range of innovative projects which put homeless people at the heart of solutions to homelessness. Kate's presentation highlighted three print items that Groundswell has co-produced that aim to empower people to take steps away from homelessness. It explored the thinking behind them, the process in which they were created and their impact.
- Co-designing MindWell Leeds – A Mental Health Information website: You want to do what? Alicia Ridout - Deputy Director and Nicola Gallear - Content Manager, MindWell
MindWell is an innovative website, completely co-designed with user groups across Leeds. From a blank sheet of paper to the current operational but still emerging site, Alicia and Nicola shared their a journey through the ups and downs of collaborative design and content development, accessibility and engagement, creative approaches and linking performance measures.
- Interviews and focus groups – getting the most out of user involvement Emily Newsom Davis, Consumer Health Information Specialist
Emily discussed the fascinating insight you get from two very different approaches to involving users. She also shared some practical steps to get the most out of these processes: focus groups – what are the key techniques to ensure group work creates stimulating debate and allows discussions to evolve usefully; 1:1 testing – how careful watching, questioning and discussion can transform how we design and write information.
- Voices and their value Diana Baxter, Head of Services, MS-UK
Diana shared the variety of approaches that MS-UK use to put those affected by MS at the heart of their work. In particular, their Virtual Insight Panel which has been instrumental in developing health information.
- Using think-aloud protocols to understand public responses to health information Samuel Smith, Cancer Research UK Postdoctoral Fellow, Leeds Institute of Health Sciences
This practical session will aim to facilitate understanding of the pros and cons of using think-aloud protocols to evaluate and test health information.
If you have any queries about this event please contact: email@example.com.