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Institute of Cancer & Genetics, School of Medicine
Cardiff University, University Hospital of Wales
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6 Feb

Public and Patient Involvement told as a fairy tale

Fairy Tale

Jim Fitzgibbon, PPI Lay Lead, and Kate Cleary, PPI Project Officer, has re-imagined the relationship between researchers and research partners as a fairy tale to illustrate the importance of communication in involving the public in research.

Once upon a time, in a land far away, there lived Ogres who studied hard and spent their days finding out useful things to help the people of the kingdom of Wales. One particular Ogre had started out in life as a well-intentioned Researcher. He was bright, full of ideas and hoped he might contribute to the health and well-being of all the people in Wales who were known as Dais. He tried to get to know as many as possible. He wanted to share his research with them to involve them in its development in the hope that this involvement might improve what he was doing.

However, his approaches to the Dais were often rebuffed, almost always treated with suspicion. Where had his ideas come from? What were his ulterior motives? Was he in thrall of the wicked funders (an alien race from London with more money than sense)? Was it all about profit, funding days out in Barrybados, posh pens and 'goody bags'? Did the Ogre really want others', perhaps contrary, opinions or was it all about confirmation of the conclusions he had already reached with colleagues within the rest of the research community (who all lived in an ivory tower, near the river Taff).

On the rare occasions the Dais agreed to meet him, he felt they treated him like an enemy. They would ask the Ogre endless questions and referred to how they had felt that they had been ignored by the Ogre's friends and colleagues. At the end of every meeting, the Ogre was always worn down.

Eventually the Ogre gave up trying to involve the Dais. After all, what did they bring to his research but longer meetings and headaches, be they from the Dais' questions or himself banging his head against endless adamantine walls! Ipso facto (a magic chant previously used by Researchers) the Dais' suspicions were proven to be well founded. They had always known 'The Truth'.

The Ogre really did no longer involve the Dais in his research, ignored them and retreated into his ivory tower where he carried on with their work, hoping that his research would be important to the Dais in the end.

One day, the Ogre went for his daily walk and was admiring the local plants in bloom when he bumped into a local Dai who was also on his daily walk. They made polite talk and as they saw each other most days, their conversation developed until they would spent many hours debating over a wide variety of topics. One day, the Ogre started to talk about his research and how he had hoped it would help the Dais in the kingdom but he lamented about how the Dais could never be involved in his work as they caused too much trouble. ‘But Ogre’, the Dai point out, ‘you Ogres never really explained what you expected from us. How could we make a difference when you never said what you wanted us to do?’

The Ogre realised the Dai had a point and invited him to his ivory tower to discuss it further over a cup of tea and biscuits. They devised a plan that would involve the Dais and clearly explain the Dais role in the research studies. When the town cryer announced the plan in the local market place, all agreed that the plan made sense and resolved to work together.

In time, research within kingdom of Wales changed: Ogres involved the Dais and communicated their expectations clearly and in turn, the Dais no longer treated the Ogres with suspicion. The Dais and Ogres could be seen discussing research together throughout the land, heads bent together in deep and meaningful concentration.

The Dai and the Ogre saw the changes that they had made and celebrated their breakthrough with a slice of homemade chocolate cake and beer.

And they all lived happily ever after!