NIHR Think Research Patient Day
On Wednesday 12th October BBS Members Jhon Bateman and Gareth Cumming attended the National Institute for Health Research (NIHR) ‘Think Research’ Patient Day as representatives of the Brittle Bone Society.
The event provided practical advice and information on the changing role of patient organisations within research. Highlighting the need for such organisations to assist in the creation of research information leaflets; as it is important to view these from the patient’s perspective and to remember that potential research participants may not be familiar with all of the medical terminology.
One of the other key points stressed by the meeting is that many Patient Information Leaflets will say that the researchers may require access to medical records in the future, but they do not provide a reason why; and for this reason it is important to give potential participants as much up front information as possible.
Click here to read Jhon’s full report.