Patient & Public Involvement

Active involvement of patients and the public in our research.

Engagement with patients, their carers and the public is critical to developing our research questions and study design. We regularly discuss our research with the Patient Advisory Group in the Edinburgh Clinical Research Facility. We also work with The Brain Tumour Charity in developing our brain tumour research with patients, their relatives, and carers.

 

Patient Advisory Group

We have been working with the Patient Advisory Group based at the Edinburgh Clinical Research Facility for the past 4 years. This is a group of 28 people based across Scotland with an interest in healthcare research. A typical meeting is attended by about twelve participants and follows a semi-structured format facilitated by our researcher. Key projects discussed with this group include:

  • Duration of External Neck Stabilisation (DENS) following odontoid fracture in older or frail adults: a randomised controlled trial of collar versus no collar
  • Early versus Late AntiPlatelet uSE (ELAPSE) after chronic subdural haematoma: a randomised controlled trial
  • Cardiovascular and Venous thromboembolic Events After brain Tumour surgery (CaVEAT) study

The Brain Tumour Charity

For three to four times each year, we ask members of the Involvement Network in The Brain Tumour Charity for feedback on our research development and discuss the study design of our projects. The Involvement Network is a group of brain tumour patients and carers from all over the UK who have an interest in research.

Meetings are held online, each lasting about one hour. Each meeting will have some new participants in addition to some participants who have contributed to this group before. We start each session by presenting our thoughts on clinical uncertainties. Participants are asked about their opinions about risk perception, outcome measures, presentation of information, and other aspects of research. We value all their input into our research and thank them for their continual support.

 

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