PPI Group - review of documents

We want to make sure all of the materials we produce for volunteers in our study are clear. Find out how we do that here.

Image
Group of adults - some researchers and some PPI members - sat around a table conversing

Before we launched Viking II in January 2020, the patient and public involvement group at the University of Edinburgh took a look at our website, information sheet, consent and FAQs. They had lots of useful suggestions, including improvements to our writing style and how to make the materials more enjoyable to read. On top of that, they were brilliant at raising questions we had not thought of. 

More recently, they reviewed our research survey, which more than 1,400 of our volunteers have completed. We have no doubt that their involvement helped lead to the great response we received.

We then decided to create our own Viking Genes participant involvement group.

This contains a mix of male and female, old and young, islanders and the diaspora, Orcadians, Shetlanders and Hebrideans – all of them Viking Genes volunteers.

They have helped with aspects of our applications to access NHS data and for further grant funding, providing a different perspective.

We also took soundings from some of our Viking Genes volunteers about the new logo design, before launching recruitment in the Hebrides.

 And we got valuable feedback from the PPI Group on our plans to offer next of kin the opportunity to consent to return of actionable results about deceased volunteers, if we find them in our research.

Please email viking@ed.ac.uk if you would like to get involved by giving input on other documents in future.