The Big Interview – Arjun Panesar
The Big Interview is a brand new monthly feature where The Diabetes Times interviews a leading figure in the diabetes community.
This month we spoke to Arjun Panesar who is the chief technology officer from the website and online forum Diabetes.co.uk.
Who is a typical Diabetes.co.uk user?
We see visitors to the community from around the world. The beauty of the digital age is that education and information is literally at your fingertips.
Access to medication may not be consistent around the world, but the digital age makes access to education possible.
These concepts are still maturing and because it’s such a new space, most people are surprised to know that the mean age is 45-54.
A total of 30 per cent of members have been members for two or more years. The Diabetes Forum has members from 140 countries and the Low Carb Program has members from as far and wide as Greece, Spain, Australia, Lebanon, UAE, Kuwait, South Africa, Pakistan, India and even Nepal.
How did Diabetes.co.uk come about?
We are digital specialists and my family has a long history of type 2 diabetes – so we started a diabetes forum, and it grew and grew and grew. The website now gets more than 2.5 millions hits a month and we have just celebrated the milestone of 200,000 forum members.
There is a massive demand for peer support through digital platforms, which is a symptom of the isolation associated with a long-term condition and both the modern age and the technological opportunities it brings.
The Diabetes Forum was the first digital community where people were able to talk about their experiences with diabetes.
People feel alone when they, or their loved ones, are first diagnosed with diabetes – whether it’s type 1, type 2, prediabetes or any other form of diabetes. So, the ability to talk to other people with similar concerns to you, just makes sense.
We hear a lot about the benefits that technology is bringing, and can bring, to healthcare
The fact you can ask anything, no matter how silly or trivial it may seem, really makes a difference and helps others understand about what may work for them.
People realise that they aren’t alone quite quickly – and there is a whole community ready to share their experiences and offer their support. It’s people-with-diabetes experts.
There is over 1.5 million years of cumulative experience between forum members – and that is helping to affect positive health outcomes among members.
How are the website and forum helping people with diabetes?
We hear a lot about the benefits that technology is bringing, and can bring, to healthcare. Diabetes.co.uk is leading the way in online peer support, education and information through a new digital community. We are a platform for change.
Quite simply, we’re focused on improving health outcomes – and that happens in a variety of ways.
People are improving their health by speaking to others on the forum, through Diabetes.co.uk education programs – which are currently the Hypo Program, Type 2 Testing Program and Low Carb Program, and through the use of a number of Diabetes.co.uk apps.
The Hypo Program is a free education program all about hypoglycemia and has had 80,000 people graduate since 2015.
Surveying users after six months demonstrates that there is a 63 per cent reduction in severe hypo episodes – which we estimate saves the NHS in the region of £3m in ambulance call-out costs alone.
The Low Carb Program is helping eight out of 10 people lose weight – the success stories are just amazing. We’ve also got a few projects launching this year that we’re really excited about, too!
It’s simple – connecting and sharing with each other is affecting health outcomes, positively. Not only is it affecting real-world health, it is changing diabetes-research and understanding too.
How is Diabetes.co.uk different from Diabetes UK?
Diabetes.co.uk is a digital health organisation. Diabetes UK is the UK’s leading diabetes charity. They’re focused on awareness, campaigning and doing great things in the UK – whereas we are kind of the Silicon Valley of the diabetes community.
It’s easier to understand us if we were to be pictured in San Francisco. We’re very different.
We’re a technology organisation which has evolved into a global community, focused on improving health outcomes through digital means – whether that’s on the Diabetes Forum, an education program or any other app or service.
It’s an interesting concept – getting better by going ‘online’. But it’s true. The concept of using data for good, for example, especially in health, is understood better in America.
That’s exactly what we’re doing in the UK. Sharing data happens in many ways – it could be having a public profile on the Low Carb Program, answering a question on the forum, or aggregating data in an anonymous format to see trends and patterns that can be used to help the next person learn and influence research and academia.
By using digital media to improve diabetes health outcomes, we’re able to provide people with tailored interventions and unprecedented access to key information, at any time.
Our work is saving the NHS money – at a conservative estimate, the Hypo Program has saved £1.4m in ambulance call-out costs. By using digital spaces, people are lowering their HbA1c levels, and thereby reducing their risk of complications – by far the biggest cost of diabetes.
People are improving their health. We’re not working against the advice of doctors – we’re enhancing it.
There appears to be a strong low-carb emphasis on the website and forum, can you explain this along with your position on this subject?
The Diabetes Forum was the first place people could discuss their experiences with diabetes – particularly around food.
The forum’s first ever thread was actually a question about fructose – and whether it was safe for people with diabetes to eat. And that makes sense, as food is one of the most direct influencers of blood glucose.
The first anecdotes about low carb high fat is helping people to manage their blood glucose can be read on the forum. There are literally pages of success stories that have a consistent formula – by lowering carb intake, people have been able to reduce their HbA1c substantially.
I read a post from a member yesterday who had reduced his HbA1c by 2 per cent in six months by adopting a different approach to carbohydrates.
Many people are not only reducing their medication dependency, but coming off medication altogether and actually placing their type 2 diabetes into remission.
Is low carb the only way? No. There isn’t a one-size-fits-all approach – but it is certainly helping many people. Lowering calorie intake has been proven to work, too – it’s about what is right for the individual. That’s the key.
A number of low-carb case studies used in academic research are from the Diabetes Forum. It’s amazing to see the community influencing research.
Low carb isn’t exclusively a type 2 diabetes lifestyle choice either. It can help people with prediabetes bring their HbA1c within normal range. The concept of paleo is very popular amongst the general public, too.
What’s really interesting is that there are also thousands of people with type 1 diabetes who follow a lower carb lifestyle.
Research from the likes of Dr Jason Fung in Canada suggest that insulin itself can cause insulin resistance – and as that science is applicable to everyone, the low carb academic space is only going to grow – it’s really interesting.
Have you got any evidence that the website and forum is improving health outcomes?
Yes – we have large amounts of data to demonstrate that the forum, the Hypo Program, Type 2 Testing Program and the Low Carb Program are improving health outcomes.
People reduce their HbA1c by 1.2 per cent over the course of a year when they join the Type 2 Testing Program, losing almost 7kg in the process. We are currently in the process of writing an academic paper on this.
Just over 80 per cent of people lose weight on the Low Carb Program – with 10 per cent of these people losing 20lbs or more.
With over 125,000 members of the Low Carb Program – that means over 80,000 have lost weight. If one person was saying they had lost weight, you could dismiss it – but there are people literally in their tens of thousands all reporting the same outcome.
There’s some really interesting developments on the Low Carb Program that we’ll be announcing soon.
There are hundreds of success stories on the Diabetes Forum that discuss how people have read information from other members of the forum, applied it to their own life, and made remarkable differences to their health.
Our forum survey this year was completed by 10,000 people and showed that 74 per cent of forum members improve the understanding of their condition after six months. It’s all about empowering people to take control of their health.
The community is propagating positive health outcomes unto itself – it’s really quite an interesting concept.
The question is, at what point do you stop ignoring self-reported data? If 10 people are knocking on your door, you can ignore it – but if 100,000 people are knocking at your door, the door is eventually going to come off its hinges!
We’re demonstrating that data can make change for good and are subsequently working with Professor Gadsby, a member of the Diabetes.co.uk Advisory Panel, on how big data has a place within diabetes research.
How is Diabetes.co.uk funded?
Diabetes.co.uk generates revenue by helping organisations recruit for clinical trials, advertising, market research, the Diabetes Shop and the Type 2 Testing Program.
We’re very transparent. We pride ourselves on being open about our practices. Because we’re not a charity, it’s important to our community that we’re open about how we make money.
We understand and respect that. We appreciate that it is very unusual to find altruistic organisations; but that is exactly what we are.
How should healthcare professionals best use the website and forum?
Diabetes.co.uk is about empowering people to be patient experts. Interestingly, 35 per cent of all Low Carb Program members were referred to the program by their doctor.
Self-supporting communities and digital health interventions can help healthcare professionals with their most precious resource: time.
Where they often struggle to have longer discussions with patients, forum users have all the time they need.
When using forums like ours, people really learn about their condition. They are not just told what they should do and sent on their way. Rather than working against the advice of doctors, we’re enhancing it.
Moreover, results show that people are improving their health through our digital solutions, reporting improved blood glucose levels, weight loss and better understanding of diabetes.
What is the future of digital healthcare?
It will become even more intelligent, providing further opportunities to improve health outcomes and save the NHS money.
Collaboration and the use of intelligent data aggregation to progress change – at an individual level as well as an academic level.
Digital health and wellbeing provides people with access to education, support and treatment interventions. It’s a really exciting, innovative space. It’s so new.
We’re excited because Diabetes.co.uk platforms are demonstrating measurable changes in behaviour, blood glucose levels, HbA1c, weight, activity and even more qualitative concepts such as confidence, self-esteem and motivation.
But still, there is so much more that can be done. The next step is in only seeing information that is absolutely relevant to you.
Everything needs to be relevant. And as people share data within communities, it will naturally have an effect on research and academia – that’s data for good. Look at the low-carb forum.
You can’t ignore the voice of hundreds of thousands of people. The future involves big data’s acceptance amongst the health professional community – data is used for intelligence, for progress in every other industry.
Access to all is the next step. Whereas offline concepts may not be scalable, digital healthcare concepts are.
This means that it’s about getting interventions that work into hard to reach areas. How can we utilise what we know to affect change in developing countries, where location, technology or access speeds are limitations to learning, and thus to change?
That’s the real challenge. It’s the future; universal access and inclusion.