Involving patients in the work of DAFNEplus

My name is Dan Beever and I’m the Patient and Public Involvement (PPI) Research Assistant on the DAFNEplus study.  Together with Wendy Baird (DAFNEplus PPI Lead), we support the PPI on the study – working to involve patients in the development of the revised DAFNE course and the trial that follows.

 

What is PPI?

Patient and public involvement, or PPI, is about actively involving patients and / or the public in the research process.  PPI means that rather than being the subject of the research, patients and the public can actively shape how a study is designed and delivered.

If you’re interested in finding out more about PPI then the INVOLVE website contains lots of useful information and resources.

 

Why is it important to DAFNEplus?

PPI is essential in any research project, as patients and the public bring personal knowledge and experience about a disease area or service that researchers and clinicians do not have.  In DAFNEplus, we can only work to develop a more effective DAFNE course by involving people with diabetes.  This is because they are the only ones who understand, first-hand, the challenges involved in maintaining the skills taught on DAFNE.

 

What progress have we made so far?

So far, we’ve set up a Patient Advisory Group in Sheffield with local diabetes patients have had a couple of meetings.

We’ve had input on the patient information sheet and other materials developed for the technology testing phase of the study which starts in the Autumn (looking at the website and monitoring technology developed to support the revised course).  In addition, there is a lot of work going on currently in terms revising the DAFNE curriculum – the group have helped with this and we have also sought input from other interested diabetes patients.

As a result, we’ve made changes to the information materials, making them clearer and providing more detail about the specific technologies.  The thoughts and views received on the curriculum, along with those from other members of the research team, are currently being collated ahead of a review meeting in September.

 

What’s next?

We’re looking to include more patients in our PPI work (including forming another group in London), and in particular a more diverse range of people involved.  Type 1 diabetes affects people of all backgrounds and we’re keen to try and reflect that and the types of barriers faced in managing the condition.

 

 

Dan Beever

Research Assistant, University of Sheffield

 

Photo credits

Traveller_40 by CC 2.0

 

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