The data will help to shape how research is designed and carried out in the future, and also the development of its legal and ethical regulation. CitizenHealthOxford fits with a growing call for participants to have greater involvement and engagement in medical research, and a move towards them being seen as partners in the process.
The registry will be hosted on PEER – the ‘Platform for Engaging Everyone Responsibly’ – which has been provided by the US patient advocacy organisation Genetic Alliance. Anyone who signs up sets preferences for how often they want to be contacted and the system puts them in control of any data they submit – they decide if their responses are shared and with whom. And, keeping with the concept of dynamic consent, at any time a participant can quickly and easily change these settings, or even leave the community. Importantly, this system also enables researchers to provide updates to participants, thus improving engagement.
As it develops, the opportunity to use CitizenHealthOxford will be opened up more widely so researchers outside HeLEX can communicate directly with participants to gain greater understanding of patient and public views.