‘Nothing about us without us.’

Blogpost by our member Renza Scibilia on the importance of involving people with diabetes in the Hypo-RESOLVE project

‘Nothing about us without us.’ That is the battle cry of many people living with chronic health conditions as we continue to push to have our voices heard in all aspects of health care. We know that being part of the development and design process of services, programs, devices and resources meant for us will always result in a better end result. The same goes for research.

This is why the Patient Advisory Committee (or PAC) has such an important role in the Hypo-RESOLVE project. And it is why I agreed to be part of the PAC. Sometimes patient involvement is tokenism at best, but with Hypo-RESOLVE, true involvement of and engagement with people with diabetes was part of the foundation of the project.

The PAC was put together at the same time as the rest of the project team was being established. There was a very strong belief by the management team that the PAC should have oversight of all the work packages and be an integral part of the overall project.

The kick off meeting started with a personal perspective of living with hypoglycaemia. I was asked to share how hypos had impacted on twenty years of living with diabetes. But we wanted to ensure that more than one voice was heard, so Bastian Hauck (another PAC member) set to getting some other real-life stories by using social media. By the second day of the Hypo-RESOLVE meeting, we had dozens and dozens of responses to the question he posed: ‘What does hypoglycaemia mean to you?’ We presented this towards the conclusion of that first meeting and those stories by many people in the diabetes community were listened to and resonated strongly with the Hypo-RESOLVE researchers.

Involvement of people with diabetes in Hypo-RESOLVE is essential. There have been times in the last twelve months where the PAC has really challenged the assumptions and ideas presented. We come from a very different place to researchers and clinicians when thinking about hypoglycaemia. The lived experience is distinctive to what they may read about, and we are there to make sure that they understand that real life hypoglycaemia can significantly vary from the theoretical.

We also find ourselves reminding the different work package leads that all perspectives need to be considered. While the PAC is made up of people with diabetes who all have different experiences, we are only a few voices. However, our connection to the community means that we can easily provide a link to many, many more voices. We believe this is essential in providing a full and completely picture of how hypoglycaemia can affect people living with diabetes.

With the first year of Hypo-RESOLVE now behind us, and year two plans in place, the PAC will continue to have a fundamental role in shaping the project and communicating what is going on.