Dr Sarah Fox blogs about CHC’s interactive health data game

Group CHC Hub

Posted on the 25th September 2018

A deadly virus is spreading and no-one is safe. One by one you see your friends and neighbours don their oval sun glasses, salute the sky and fall to the floor clasping at their ears in agony….

But, maybe you’re gonna to be the one that saves them? 

Yes, this isn’t like any virus you’ve seen before. This virus attacks victims’ brains, activating Broca’s 90’s music circuit and leaving sufferers unable to shake the Brit Pop classic Wonderwall from their heads. And you thought Liam and Noel couldn’t get any more pervasive…. 

Believe it or not this scene is not the start of a low budget horror movie, it’s actually the set up for a game communicating the importance of health research and data sharing.

Perhaps, while watching your GP type up your notes on their PC, you’ve wondered what happens to this information, where it’s stored and who has access to it? Well, these electronic patient records do more than just sit on a doctor’s PC, they hold a wealth of possibilities and pitfalls waiting to be unleashed.

Optimists and dreamers may recognise the power that dwells within these records. Knowledge of different treatments, successes, failures and diagnoses can all be linked up, pawed over and analysed to build a better, more streamlined health care system and to develop new cures – indeed, this research could go on to save countless lives. But, and there’s always a but, to reap the benefits of this big health data, our best and brightest minds must be afforded access to this information; arguably the most personal and private information we could ever share – our health records.

So, how do you feel about sharing your medical records to improve healthcare for yourself and others?

This is where we return to the land of impossible viruses and mind-bending musical therapies.

The scientific and ethical considerations underpinning the data sharing debate are complicated but, studies have suggested that public trust in data sharing increases if people are given an opportunity to engage thoroughly with the topic and to listen to arguments on both sides of the debate. However, the days of dialogue and discourse required to impart all necessary information on this subject are not feasible to deliver en-masse.

Players were split into two teams, taking on the role of either medical professional or health researcher but, both groups needed to work collaboratively to successfully complete the game and gather sufficient information about the three possible treatments. The research team built up information on treatments by interacting with this data board – to uncover the best treatment they needed to collect samples of beads which reflected success rates for each treatment – black beads showed failures while silver were successful!

So, assuming public trust and a willingness to share information is essential to improve health care research and that the best way to increase trust is through open dialogue and informed debate. Then, is it possible to develop an activity which imparts the most important information on this topic in an entertaining, digestible and interactive way – one which can also be accessed by members of the public en-masse?

We think so. Therefore, this was the basis of a project co-funded by The University of Manchester’s Wellcome ISSF fund and the Connected Health Cities program.

Myself, alongside game designers and programmers Jana Wendler (Playfuel) and Benjamin Green (Republic of 1) tasked ourselves with creating an immersive role-playing experience which allowed players to take ownership of the science and debate surrounding data sharing and form their own decisions based on this experience. And so the Wonderwall virus was born.

Following consultations with data science professionals and lay members of the public, not forgetting a handful of intensive play tests, the game soon took shape. Players were to be introduced to our pet virus and three music-therapy treatments (synth-pop therapy, operatic cleansing and soul healing), they would then be tasked with uncovering which treatment was most likely to slay the pesky Wonderwall ear-worm.

We designed the game to walk players through a number of procedures and considerations inherent in health-data research. These procedures elegantly meshed together, painting a picture of why access to patient data is necessary for successful research and how important data security and public trust are to this process; all while also providing a fast-paced, fun gaming environment for players to interact with.

We believe that the combination of fast paced game-play and interactive tasks made this game particularly popular. Specifically, since those passing by our stall were drawn in by the activity and wanted to know more about what we were doing and why.

To gather the most information on treatments medics and researchers needed to share patient information. This requirement for data sharing allowed us to build into the game references to data security, patient opt-in/out and enabled us to track public trust in the team’s working processes.

The game was showcased at two large North West science festivals, the Lancaster Science Festival and the Blue Dot Festival. From these events we surveyed almost 300 players after their interaction with the game. Based on those surveyed the game was particularly well received at both events, with 94% of players stating that they had enjoyed playing the game and 89% saying that they would recommend our activity to a friend – 79% also said that they learned something new playing the game.

When prompted to elaborate on this learning players generally converged on one of 3 learning points:

  1. The importance of data security: i.e:
    • “A good demonstration of the importance of keeping data safe
    • “Data security is hard but very important
    • How Data Security Affects Public Opinion”
  2. The complexity inherent in the research process: i.e:
    • “How complex data sharing can be
    • Lots Of Things To Keep In Mind All At Once”
  3. The importance of sharing data for health research: i.e:
    • “Not sharing data slows down research
    • “Sharing Information Will Help Understand Better Treatment Methods
    • “ How Difficult It Can Be To Find Enough Information For A Cure
    • “The significance of sample size

These learning points corresponded well with those which we had intended to highlight when we started developing the game.

Players were also asked to provide general feedback on the game as a whole and how they found the gaming experience. These responses were overwhelmingly positive, with a few players expressing a desire for more information and for longer post-game interactions to discuss the concepts behind the game:

  • “This is a great way to learn while having fun”
  • “A bit complex to get the head round at the beginning but really good once you get into it”
  • “I just goes to show, little things like how you react to a treatment can save someone else’s life”
  • “We had a lot of fun playing this and would be happy to know more about data”
  • “Well designed game”
  • “Great way to interact with ideas around research and data. Would like a little more debrief to understand outcome”
  • “Blinking brilliant! Fun and engaging”

Overall, I feel that this experience lends credence to the idea that interactive gaming can be successfully harnessed to enable non-academics to explore technical concepts in-depth during a short, engaging, interaction. The interactive elements of the game encourages players to think about the concepts underlying the game-play, taking players on a structured journey while still allowing them freedom to make their own in-game choices, Therefore, encouraging players to draw their own conclusions based on the game environment and their own in-game decisions.

So, did we eventually manage to rid the world of the terror that is Wonderwall? Well, sadly none of our treatments were 100% effective, so the Wonderwall ear-worm will live to play another day but don’t worry, so will we and we’re looking forward to it!

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