Research shows that patients who are also participants in health research are a lot more engaged in their and their family’s health. Additionally, for a lot of patients, clinical trials are a (sometimes, the only) care option. Given that, it is imperative that we communicate effectively with our patients about health research. Children are a special population. Getting children to understand health research earlier in their lives can have longstanding effects on their wellbeing, and can lead to continued participation as they grow older. This project was set up to explore ways in which we could increase understanding about health research and it’s related concepts in child patients and their families.
Comprehending health related language is the first step to being engaged in one's wellbeing. Remy, an augmented reality character, helps children and their families explore and understand the world of health research.
We conducted in-context immersion, listening sessions and body storming activities with patients and families to understand their experience of the informed consent process. While the process is for children and families, it is administered by research staff. We conducted expert interviews and observation sessions to understand the research staff’s experience, their constraints, and their concerns.
1. User Research
One of the core mediums of information exchange about health research is the research informed consent. Informed consent is the process of telling potential research participants about the key elements of a research study and what their participation will involve. This process typically includes providing a written consent document containing the required information and sometimes an oral presentation of that information to prospective participants.
The current informed consent process can be overwhelming for patients and families. The consent itself is usually very long and highly clinical in nature. With health literacy being low nationally, patients rarely understand what they are consenting to or choose not to participate at all in a study. This is especially true of parents who are looking out for the best interest of their children.
Research indicates that children learn better when they are presented information through various modes such as pictures, sounds, movement and language. Informed consents are only offered in one mode (textual).
Children and families decide about participation together. This calls for a learning method in which they can engage with each other to reach upon the decision that is right for them.
After presenting the informed consent, study teams try to gauge the understanding of health research related concepts by asking questions of the patient. However, this is inconsistent, given that the metrics tracking comprehension and effectiveness are not embedded within the teaching instrument.
To make the information presented through the informed consent process understandable for children and their families, we are experimenting with creating an accessible picture booklet in addition to the actual informed consent. The booklet contains the story of “Remy”, a kid that is trying to understand health research. Like all children’s books, it is best enjoyed when read by parents and their kids together.
While the booklet in itself is a step up, the kids that we showed it to, lost interest quickly. Additionally, it was still difficult to effectively measure the success of the informed consent process. To make the experience more engaging for the children and their families and to effectively gauge their comprehension levels after, we built an augmented reality experience to support the picture book.
The experience contains a series of adventures that “Remy”, and in turn, the player can go through. The player can choose from one of four adventures:
Through different stages of the adventure, the player is interacting with different health research concepts through “Remy” and her surroundings.
At the end of each stage of the adventure, the player plays a game. The game is an instrument to further engage the player in the concept at hand and is then used to evaluate comprehension levels of these different concepts.
We are evaluating the effectiveness & usability of both the booklet and the augmented reality experience with children and families of different ages, backgrounds and comprehension levels.
Unfortunately I cannot share more information (including visuals) publicaly about this project due to non disclosure requirements. I would be happy to share information in person if you contact me.
