Two years ago today, I was at Melbourne airport, getting ready to board a plane to get to Nijmegen, via Amsterdam, for the second AGM for the HypoRESOLVE project. I have been part of the Patient Advisory Committee (PAC) since the project’s start, and am honoured to be included amongst such a terrific and passionate group of people with type 1 and type 2 diabetes to lend the lived experience perspective to the work. (Disclosure statement at the end of today’s post.)

A project this big has a lot of moving parts and there is a constant stream of work being done. Right now, one of the most exciting things that we are seeing is a survey for people with diabetes to share their experiences of how hypos impact the quality of life of people with diabetes and our loved ones.

I love that this project is looking at more than simply the clinical side of hypoglycaemia. I’d like to think that the PAC has been influential in this, however one of the things that made me so keen to get involved in the project was that, from its inception, the psychological burden was an integral part of the research. Work package 6, led by Jane Speight and Frans Pouwer, aims to provide just what the impact of hypos are on the quality of life of PWD and our families. I know that in the presentations I’ve given for this project (including at the launch meeting in May 2018), my focus has certainly been on how hypos make me feel emotionally, rather than physically. (I’ll link to pieces I wrote about these presentations at the end of the post today.) 

Right now, it’s time for more than just the PWD on the PAC to have a say – to have Your SAY – by taking part in this new survey. It takes about 30 mins, although I’m seeing heaps of people saying they’re whizzing through it much quicker than that. To complete the survey, you need to:

  • be 16 years of over
  • be able to complete the survey in English
  • have type 1 diabetes, diagnosed over six months ago
  • have type 2 diabetes, and use insulin
  • live with and be in a relationship with someone with diabetes.

Click below to go to the survey, and to find out more information.

The more people who provide their experiences, the more rounded and richer the research will be. Throughout the project, the PAC has repeatedly advocated for the voices of as many PWD as possible to be included (this certainly isn’t the first time a group extending beyond PAC members has been consulted), so please, if you can, take the time to do the survey.

Hypos are a tricky beast; trying to get a really good picture about how they affect our quality of life is essential in developing treatments to make them more manageable. 

More about HypoRESOLVE?

Here’s the projects website.

This post, explaining all about the project’s launch meeting. 

This post about a talk I gave at a satellite meeting at EASD which addressed the differences between how PWD define hypos and the official categories. 

This post, about the difficulties of defining hypoglycaemia in ways that are meaningful for everyone.

Here’s a little video that we recorded at the kick-off meeting. 

And stay tuned for the podcast!

DISCLOSURE

I have been a member of the HypoRESOLVE PAC since the project started. Until the beginning of this year, PAC members were volunteers on the project, with all flights, accommodation, meals and expenses covered from the project budget. Since the beginning of 2021, PAC members have been paid an honorarium for time worked on the project. I have not been paid to write this post, and my words here have not been approved (or read) by anyone on the project before publication.