I have touched down back to reality after a whirlwind of 4 days in Perth, talking, learning, thinking and considering, the latest research in diabetes, and connecting with friends old and new. I hit the ground late Friday night with some issues with my diabetes after the security at Perth airport went over the top and delayed me from picking up a hypo, that ended up with a rollercoaster of blood glucose for the next 15 hours…. .waking with nausea and vomiting on Saturday morning was not my ideal start to the weekend, followed by a repeat on the early hours of Monday morning! I think some airports in Australia need some serious education about diabetes devices, after a similar experience here in Adelaide on the way out. I don’t think I am alone in feeling like I was hit by a truck after such an intense few days. I am sure many others were a bit seedy. However, diabetes and gastroparesis certainly makes every experience more of a challenge and my duck feet were paddling like mad to get through the week unscathed. The DexcomG5 was wonderful and held off hypos and hypers all week, until the airport incident…
So, how do you summarise 3 days of intense information, sharing and tweeting?! It is not easy to do but I have been thinking about my main takeaways from the ADEA/ADS diabetes conference last week and have decided there were some major themes in the sessions I attended:
- Person-centred care and the relationship between health care providers and people with diabetes
- Technology in diabetes
- Prevention of type 1 diabetes
- Mental health
- Peer support
As one of the top influencers of the conference with my madly tweeting fingers (follow here) I often use twitter as a note taking strategy, as well as knowing what it is like not to be at a conference and to rely on twitterers for updates on sessions, so I have a lot of content to go back to, to help me in summarising this for you, and will do my best, but you can also go check my tweets and feel free to ask me any follow up questions.
Person-Centred Care in Diabetes
Remembering that the conference is for diabetes health care professionals, there were lots of sessions about collaboration, partnerships and being more person-centred in approaches to care. You can read my post here, where I delve into this topic more. I will add that for many diabetes educators in particular, this is not a new concept. I have met so many wonderful diabetes educators over the years, who are incredibly caring, dedicate and person-centred. I wonder if the background professions add layers of this to their way of interacting with people with diabetes, whereas some medical professions are more focused on the acute model of health, and hence more of a power differential between patient and doctor. However I also know many wonderfully caring, person-centred doctors, so I don’t think you can generalise. Just like people with diabetes, each health care professional is unique and brings aspects of themselves into the relationship. It is heartening to see so much discussion around this topic.
Jane Speight from the Australian Centre for Behavioural Research in Diabetes kicked off day 1 with a sesison about why researchers must consider patient reported outcomes in studies. In the talk she pointed out that the type of treatment or technology used might not matter to the clinician or researcher, but it matters to the person with diabetes; that there is much more to quality of life than HbA1c (and this point was made in numerous talks); that patient reported outcomes get to the real centre of issues because they are reported directly by the person and not interpreted by someone else; that this sort of data can be used to measure risks as well as benefits of a treatment or therapy; and that in carrying out research, the researchers must understand what they are aiming to measure, and whether the measures they are using are actually sensitive to those things, otherwise it is a waste of time and the results can not be relied upon. For those of us living with diabetes, Jane emphasised, it is the lived experiences, such as quality of life, that matter most to us, and finished with the statement “how do we make life BETTER for people with diabetes, not just longer” – bravo to that.
Technology in diabetes
Day 2 kicked off with a great session supported by Novo Nordisk about insulin and technology. There was some discussion about the inertia of some doctors to prescribe insulin in type 2 diabetes but how this is essentially the thing that is needed. There is on average 4 kilos of weight gain with starting insulin, but so many benefits, that the question was asked – is this the price we have to pay? There are new insulins coming that hope to minimise the side effects such as weight gain and hypos – we hold our breaths for these! Professor Timothy Jones spoke about new technology in diabetes. Dr Jones is Head of Department of Diabetes and Endocrinology, Princess Margaret Hospital for Children and Clinical Professor at the Telethon Kids Institute, University of Western Australia. He started by stating that even with all the new tech we still need education and support – this never changes. This was supported later in the conference with a session outlined below emphasising that health care professionals must take a “warm hands” approach to care, no matter what technology we have at our fingertips.
Professor Jones outlined the progression towards a closed loop system, some call an “artificial pancreas” – this has been very fast. As tech progresses, Dr Jones said the most important thing is that these systems reduce burden for the users, and do not increase this – both person with diabetes and health care provider. He predicts that as technology becomes more accessible this will be a challenge for the health system to understand and deal with all the data that will become available. At the moment there can be some inertia from health care professionals to start something like CGM or a pump because it is one more thing for them to do in the limited time they have with people. However he said, we had the same arguments about subsidies for blood glucose monitors when they first became available. Affordability is the biggest barrier and we need to make sure all adults have access. New therapies need to “improve diabetes happiness as well health” says Dr Jones – another big yes to that!
The tech theme continued with Dr Petra Wilson. Dr Wilson’s experience in healthcare spans more than 20 years and covers academia, civil service, corporate and NGO sectors. Petra has recently established Connected Health Partners, a specialist consultancy practice focusing on legal, regulatory and policy issues in eHealth. She discussed the positive use of all sorts of apps for managing your health – diabetes and non diabetes related. These included apps for meditation and stress management, as well as diabetes apps such as MySugr. For apps to be useful, Dr Wilson says they need to be “sticky” in that they remain useful to the user over time. She made the point that downloads do not reflect use or quality of an app and that integrated apps that allow you to share data with your health care professionals are the most useful. Tech is about much more than apps though and co-creation where people with diabetes and health care professionals work together to develop them is key. The most powerful statement from Dr Wilson was that we need “cool technology for warm hands” – we want tech that will enable health care professionals to use their warm hands in caring for people with diabetes, not spend more time on a keybobard. We also need more standards, regulation and interoperability so that people are not required to continually change products to access new tech. This was a running theme during the week. Tech solutions must “talk to each other” so people do not need to continually re-enter data and the messages are not lost in translation.
Prevention of type 1 diabetes
There were a few sessions on the process of type 1 diabetes and how people are using this knowledge to work on prevention of type 1 diabetes in at risk people. Dr Carla Greenbaum kicked this off with her talk about Disease Modifying Therapy in type 1 diabetes. Dr. Greenbaum is Director of the Diabetes Program at Benaroya Research Institute (BRI) in Seattle. BRI is a non-profit research center focused on translational and clinical studies of type 1 diabetes (T1D) and other immune mediated diseases.
Dr Greenbaum discussed the progression of type 1 diabetes and how diabetes technology is still not helping us to achieve ideal HbA1c in all people with diabetes. She compared type 1 diabetes to arthritis and the fact that in many autoimmune diseases, immune modifying therapy is used to prevent progression. She also pointed out that you have a 15 times increased risk of developing type 1 diabetes when you have a family member with it. Type 1 diabetes prevents overtly but we now know there is a long preclinical phase with no symptoms, where it would be possible to intervene and prevent type 1 diabetes. This is where much of the current research is focused with a range of trials – so far early treatment shows a profound impact on betal cell function. The rate of progression varies a lot depending on age – so adults diagnosed with type 1 diabetes progress much more slowly through this process than kids, who will progress faster.
Professor Jenny Couper from the Endia study spoke later in the week about their work looking at prevention in high risk individuals. Professor Couper is a paediatric endocrinologist who directs the Diabetes and Endocrinology Department, Women’s and Children’s Hospital, SA, and the Discipline of Paediatrics, University of Adelaide. She leads the NHMRC JDRF Centre of Research Excellence for the Protection of Pancreatic Beta Cells and the national ENDIA (Environmental Determinants of type 1 diabetes) consortium, for which I am a consumer rep. Professor Couper spoke in depth about factors such as the gut microbiome of mother’s in type 1 diabetes, as well as viral exposure. They are working on understanding more about what early life influences may impact the development of type 1 diabetes.
Mental and physical health
Lori Laffel was one of the keynote speakers. Professor Lori Laffel is Chief of the Pediatric, Adolescent and Young Adult Section and a Senior Investigator/Co-Head of the Section on Clinical, Behavioral and Outcomes Research at the Joslin Diabetes Center, as well as a Professor of Pediatrics at Harvard Medical School. Under Dr. Laffel’s leadership, the pediatric program at Joslin has more than quadrupled in size and is recognised worldwide as a major pediatric diabetes centre for clinical care and research. Her main talk was about improving bio-medical and psychosocial outcomes in young people with type 1 diabetes.
She started with the statement that until we have a cure, the goal is for people with type 1 diabetes to live well, healthily and happily – to live our best lives. As someone who works with kids and their families, she touched on the fact that children experience guilt when they see the pain that the diagnosis and daily management of their diabetes can bring to their parents. Diabetes is stressful for the entire family, and even young children feel distress – their own and their parents. She highlighted the fact that psychosocial supports are critical to health outcomes, and that less than a third of adults in the states are reaching the HbA1c targets, despite having better technology. Her main takeaway was around “caring not curing” and she spoke of technology being so very important, but again that it is about helping warm hands do their work. She wishes we could “write perscriptions for 2 loving parents” for every child with diabetes. On the issue of new technology, it can increase burden – with HbA1c becoming a “blame and shame” experience – the ability to reach for tighter targets can lead to reduced wellbeing. There is an enormous pressure on parents to be ever vigilant. In their work Laffel says that care ambassadors have been used very succesfully to reach out to families in between appointments.
She talked further about the expectations we should have for technology and new treatments in diabetes. We need to acknowledge barriers and provide realistic expectations when we offer new tools and technology. We must also change the way we talk about the “latest breakthroughs” in diabetes because it can be seen as a “cure” and then when people realise that it really isn’t, this can be damaging to your mental health. Headlines that talk about an “artificial pancreas” for example, when it is really a closed loop system, can be very misleading.
Diet and physical health
I attended a session on intermittent fasting that was very interesting. The fasting part is not about not eating, but more on the 5:2 diet principle, where on 2 days of the week you eat very low calories of around 600 – 800 maximum and on 5 days of the week eat normally. The studies used 3 meal replacement shakes on the low calorie days, but you do not have to do that. Amanda Sallis spoke first. Amanda leads a research team at the University of Sydney’s Boden Institute of Obesity, Nutrition, Exercise & Eating Disorders. Amanda’s research into hypothalamic control of appetite, body weight and body composition aims to help more people to lose excess weight and keep it off. She focused on their work looking at periods of time in and out of energy restriction (calories). Thet changes in the brain after dieting make it very hard to lose weight and then keep it off due to a drive in the brain to eat very high calorie foods after a period of calorie restriction. In mice and rat studies they showed reversal of some of these changes, but in human studies there was no additional weight benefits – however, the benefits were equivalent to constant dieting. The time required for reduction of adaptive response to energy restrictions in humans with excess weight may in fact take 10 or 14 days and energy balance appears to be important too.
Jane Overland spoke next on this topic. Assoc. Prof. Jane Overland holds a Clinical Chair with The School of Nursing, The University of Sydney. She has worked in chronic disease management for over 20 years and was Australia’s first Nurse Practitioner specialising in Type 1 diabetes. Jane is currently employed at the Diabetes Centre at Royal Prince Alfred Hospital in Sydney in this role. Jane’s conculsions were that intermittent fasting such as the 5:2 diet are useful for some people. This way of eating is equivalent to steady dieting, but not better, however for some people it may be an easier way to manage weight as the calorie restriction is only on 2 days per week. There were issues in their 5:2 STOP Study with managing hypos and insulin and medication needed to be altered on the “fasting” days. They found no difference in glycemic control for people with type 1 diabetes on either diet, but significant drops in HbA1c for people with type 2 diabetes.
As you would know, having people who get you is one of the most important parts of a happy healthy life with diabetes. A few of the sessions talked about peer support, and the different ways this can be offered. The lovely Renza from Diabetogenic talked about “finding your tribe and loving them hard” – and there were discussions around structured vs unstructured peer support programmes, across the conference. Many people in the online diabetes community find solace, a shoulder and practical help, through connections with each other, and the power of this network can be incredible. Other health care providers are offering more structured peer support programmes. The main point was that as with many things, there is no one size fits all – some people will prefer structured programmes, whereas others will like the ability to come in and out of the online community. People have different needs and preferences. Renza also talked about the fact that you have to be ready to make these connections. I know as a teen I had no interest in connecting with other people with diabetes, but as I grew into my late 20’s it was something I craved. Timing is key. Another great point made was the fact that peer support is much more than “tea and sympathy” and Renza’s slide here was very powerful.
The most important aspect of peer support is that it offers the following four areas:
- assistance in daily management
- social support
- linkage to clinical/community resources
- ongoing support
Systematic reviews have shown that peer support offers clinical benefits as well as mental health outcomes, and in one study, people with high levels of distress but who had peer support, had less hospitalisations. Dr Jessica Browne from the Australian Centre for Behavioural Research in Diabetes folllowed, with a roadmap for peer support. Online support is shown to be prefered by many people, but is not the only choice. Some people prefer structured support with topics, others more loosely organised support.
She had a number of recommendations:
- Increase promotion of existing peer support programmes
- Ensure there is a range of peer support models available – the mode does not matter, it is choices that matter
- Invest in understanding what works for who and why
- Increase engagement in peer support for the hardest to reach people such as men, people with type 2 diabetes and non english speaking background
- Improve awareness of peer support among health care professionals
- Prioritise funding for all aspects of peer support
Please let me know if you have any questions or thoughts on these points. There was a lot to take in and I am sure more will arise for me in coming weeks. But for now, this is a good summary of my main take home points.