DIABETES TODAY 2/5: What do diabetes patients value?
One of the most overlooked aspects of living with diabetes is the ‘cognitive burden’, says Kyle Jacques Rose, Board Member of IDF Europe, a leading patient advocacy organisation. People with diabetes are trained to think about what they eat and when they should use medication, and they face constant reminders of their limitations throughout the day.
‘We constantly have to think about counting carbohydrates and glucose control if we are to avoid experiencing the rollercoaster of glycaemic variability where blood glucose swings form high to low, and vice versa,’ says Kyle. ‘Living with this burden takes its toll, often making it difficult to focus on family, work and other aspects of day-to-day life.’
Diabetes care has improved significantly in recent decades but, when it comes to delivering real value to patients, there is still room for improvement. ‘One aspect of care that the healthcare world has not been able to address is this cognitive burden,’ says Kyle who has insulin-dependent diabetes. ‘Coupled with the constant judgement by well-meaning friends and neighbours who frequently remind us of our limitations, on many days, it’s hard not to feel like you’re failing.’
As a result, an estimated one in four diabetes patients suffer depression. ‘To be freed from all of this and become more independent would be a huge achievement,’ says Kyle.
In addition, diabetes patients value tools that can prevent complications – such as kidney disease, blindness, and cardiovascular problems. These are serious concerns but may be less immediate to an otherwise-healthy person living with diabetes.
Age of the artificial pancreas?
So, how close are current technologies to providing glucose control without demanding constant input from patients? ‘Some technologies are making an incredible difference in people’s lives, but while existing tools have been improving, there is still no seamless toolkit that offers convenience and independence,” says Kyle.
One promising advance has been the development of continuous blood glucose monitoring. It makes it easier for patients but stay on top of their blood glucose levels. ‘This is tremendous and can help keep glucose levels in the normal range but it’s still quite clunky and requires patients to carry around a lot of kit.’
The most recent versions of the technology is the ‘hybrid closed loop insulin pump with continuous blood glucose monitoring’ – or artificial pancreas, for short. These systems have sensors that monitor blood glucose and can then respond by administering glucose if required. While not yet perfect, the principle of seamless and automatic glucose management is hugely attractive to patients.
However, this brings us to another issue: the need for technologies to be accessible. ‘The latest version of the technology will probably only be in the hands of a very small percentage of people with insulin-treated diabetes,’ explains Kyle. ‘We’re hoping for something that is not only seamless but also cost-efficient enough to be accessible right across Europe.’
Listening to patients’ voices has been an increasingly important part of healthcare product development and policymaking. In an era of value-based healthcare, which emphasises the delivery of outcomes that matter to patients, patient engagement has become increasingly important.
‘Patients need to be involved earlier rather than when a device or a regulation is close to the final stages,’ says Kyle. ‘I think things have gotten better over the past decade. I recognise that from an external perspective it may not seem easy to engage with patients throughout the process, but it is worthwhile in the long run and more importantly, it is the right thing to do.’
He speaks from experience. Kyle works with MySugr, a Vienna-based start-up that specialises in app-based care, whose reach has recently surpassed 1 million users. Their products are made by people with diabetes for people with diabetes. ‘From day one we have listened to patients,’ he says. ‘And while each individual has their own experience, the feedback we have received has helped shape our work. It’s a great example of what can be done.’
ABOUT KYLE JACQUES ROSE
Kyle Jacques Rose is the founder of Delta PM Diabetes where he serves as managing director. His primary focus is innovation in chronic disease therapy, community engagement and collaboration, and product awareness/training of health care professionals. Kyle is particularly interested in the aspect of digital engagement and motivation for better health outcomes. Both a healthcare industry veteran and avid patient advocate, Kyle’s previous work experience includes roles at Abbott, Medtronic, Sanofi, as well as NGOs such as International Diabetes Federation Europe, where he is a Board Member, and Team Type 1 and Team Type 2 (now Team Novo Nordisk) where he was a founding team member, director, and cyclist.
He earned his B.S. in Engineering from Cornell University and his MBA from INSEAD. He belongs to INSEAD's Health Care Management Initiative as EiR Visiting Faculty after having previously served as presenting faculty at the Stanford University School of Medicine and College of Engineering BioDesign Program.
Other affiliations include Advisor at INNODIA (International consortium under the EU Innovative Medicines Initiative), Steering Committee: EU Patient-Medtech Dialogue, Member - American Diabetes Association, Union Sports et Diabète (France), and Fédération Française des Diabétiques (Rhone Alpes, France).