See me, Hear me, Know Me: Digital interfaces for health storytelling
Introduction
Hello, I’m Marissa Cummings. I am a Master of Research student at The Glasgow School of Art, funded by the Digital Health and Care Institute (DHI).
Thank you for considering taking part in my research project. This page will explain a bit more about what this involves, so that you can decide whether to participate.
Already interested? Scroll to the bottom for information on how to take part.
What is this project about?
In every interaction we have with a new health professional we are required to share information about our current and previous health conditions, in order to access support. For people living with long-term conditions this story can be complex and emotionally challenging to communicate in a short consultation. However these stories are vital to help professionals better understand the person's challenges and goals, and support them to live well with their condition. Despite the value of these stories, they are not currently part of our health records.
My project looks at how a digital tool could be designed for recording and sharing health stories. I would like to involve people living with more than one health condition in developing this digital tool, to understand how these more complex health stories can be recorded and communicated.
Who can participate?
You must be:
Over 18 years of age
Living in Scotland
Managing two or more long-term health conditions
What is involved?
If you decide to participate, we will meet for three one-to-one sessions together (meaning that no one else will attend your session). Each session will last approximately 1 to 1.5 hours, and will be done remotely online so you can participate from home. I expect the sessions to take place over the course of September-October 2020.
In the first session, I will ask you to tell me about your health story. The amount of detail you choose to provide is up to you – you will never be asked to share information that you don’t want to.
In the second session, we will create a visual representation of your health story using digital tools I will prepare in advance. After this session, I will use the ideas that we created together to design a prototype for a new digital tool to support people to make and share their health story.
In the third session, we will look at the prototype together. You will have the opportunity to try out the prototype and tell me your thoughts.
Anything that we design during our sessions together will be used by myself for the purposes of my research. However, you will also be able to keep a copy of the version of your health story which we have created together for your own use.
How will I be protected and what will happen to my information?
No images of yourself or any identifying data (e.g. name) will be used in the research output. Any information collected during the research will be anonymised and identified using a pseudonym (fake name) which you can choose for yourself. Any information about you will be altered to remove and/or obscure any personal or identifying data.
If you change your mind about anything you have shared during our sessions, you can ask me to omit that from the final output. You will also have an opportunity to review the final output and give consent before it goes into my published thesis.
Your anonymised information will be used in publications (e.g. my thesis). It may also be used in an anonymised form on The Glasgow School of Art or DHI’s websites, conference papers, journal articles, lectures, and broadcasts as part of future research and teaching.
You may choose to withdraw from the project at any time. If you choose to withdraw, no information collected about you will be used in the research.
How can I learn more?
If you are interested in learning more and/or becoming a participant, please email me at:
You can also download a copy of the project information sheet (PDF).