Getting in touch with your inner guinea pig
Students, academics , health care professionals and members of the public in attendance at Professor Amanda Burls' inaugural lecture last week were surprised to find themselves invited to 'get in touch with their inner guinea pig' and join a randomised controlled trial about whether eating dark chocolate improves cognitive function and mood.
Although the trial didn't produce the hypothesised outcome, that dark chocolate would be more effective than white chocolate (a higher proportion of those eating white chocolate answered the test question correctly), Professor Burls succeeded in her primary objective, which was to demonstrate how the complexities inherent in a randomised controlled trial can be made simple and fun and help the public understand health research.
The trial was used to illustrate important elements of how studies can become biased. For example the importance of "allocation concealment" for getting comparable groups was discussed when some participants, eager to get to their chocolate quickly, opened their opaque envelopes before deciding whether to join the trial or not. At least one person decided not to join the trial because she didn't like the type of chocolate to which she had been randomly allocated. Others were seen swapping their chocolate, after agreeing to join the trial and opening their envelopes, illustrating cross-over and the need for an "intention to treat analysis".
One participant suggested that the aftertaste of the dark chocolate may be a contributing factor and an area for possible redesign in future. The animated discussions showed how involving patients and the public is engaging, educational and entertaining.
The role social media can play in propagating inaccurate and potentially dangerous information was also discussed. The examples given, from vaccination debates and venoplasty for multiple sclerosis, revealed that this could be a real cause for concern and illustrated why it is so important that the public and patients know what makes research trustworthy and are able to spot bogus health claims.
In order to look at the best ways to help the public and patients become discriminating users of health information, in 2006 Professor Burls organised a meeting of health service users, members of the public and patients and clinicians and health researchers. The International Network for Knowledge about Wellbeing (ThinkWell) was borne at this meeting.
ThinkWell's founding mission was:
"To improve the health and wellbeing of citizens across the world by enabling them to make informed decisions about lifestyle, diet and health interventions through public-led health discussions, education and research, using the internet and the mass media as the fundamental tools."
ThinkWell aims to bring together health care professionals, patients, health service users, and health researchers to prioritise, design and participate in health research.
An important current ThinkWell project is setting up an online platform to enable members of the public to join together to plan and undertake health research. This is known as the PLOT-IT (Public-Led Online Trials - Infrastructure and Tools). ThinkWell was formerly established as a charity in 2013.