Updated: Nov 12, 2021
Part 3 of Access to hope: The discovery of insulin 100 years on
Bec Johnson, Type 1 Diabetes Family Centre CEO
November 14, 2021
“We can teach many patients together and each is likely to teach another” – Elliot P. Joslin
Type 1 diabetes can be a profoundly isolating condition to live with. Invisible to others, the mental load of making 180+ extra decisions each day in order to manage glucose levels is a burden that only people impacted by diabetes understand. Connection to others who live with diabetes is paramount. Peers facilitate knowledge exchange, provide social support, and most of all, allow people living with diabetes to feel seen, heard, and understood on a level that even their loved ones may not be able to provide.
A century ago, peer support probably looked very different to how it looks today, but its essence – to create opportunities for people impacted by diabetes to support each other – remains the same. Leonard F.C. Wendt, MD, opened the doors of the first diabetes camp in Michigan in 1925, and the concept of residential camps for children with diabetes spread across the world. Diabetic Associations formed - Australia’s first Diabetic Association was formed in 1937 in NSW, followed by Associations in Victoria, South Australia and Tasmania in the 1950s. These Associations were “self-help organisations aiming to improve the lives of people with diabetes through practical guidance and public education”,  and they eventually joined to become Australia’s peak body for diabetes, Diabetes Australia.
Peer support first appeared in the research literature in the 1980s, and the upward trajectory of studies into peer support over the last 40 years demonstrates the increasing interest in peer support as an effective and important aspect of diabetes care. Camps, social activities and support groups for people with type 1 remain, but online connection has given peer support a potent new lease on life.
Connecting with other people with type 1 online can provide powerful, instant support, answers to pressing or urgent questions, ways to celebrate successes and share lessons, friendship, camaraderie and a sense of belonging. Digital diabetes communities give members help at their fingertips from knowledgeable, compassionate peers who also have skin in the game. When carefully moderated to ensure risks (such as giving insulin dosing advice) are closely managed, digital diabetes communities can be valuable, safe, and effective sources of quality information and emotional support for people with type 1.
Indeed, patient communities may be changing the very nature of healthcare delivery itself. Stanford Social Innovation Review wrote in 2018: “Platforms that provide a way for patients, caregivers, and health care staff to share stories and develop solutions across the health system are disrupting traditional hierarchies in medicine.” The paper highlighted that patient communities provide people with support resources beyond their healthcare providers, and fuel “patient-created hacks and innovations” – such as the #WeAreNotWaiting movement, where a community of tech-savvy people with diabetes built viable DIY-artificial loop systems well before commercial systems caught up. As such, online patient communities are challenging the traditional power dynamics between patients and clinicians.
There is no doubt that online patient communities are here to stay. They champion a different aspect of the healthcare experience: a profoundly human one. The question is, can they be aligned with traditional models of medical care, where there is “little room for subjective experience, preference, emotion and interpretation”? Healthcare is characterised by intense risk management, high governance requirements and complex accountabilities, which must be assured for quality and patient safety. As platforms proliferate and online communication becomes more and more our norm, will patients – who are able to instantly ‘crowdsource’ answers (of varying quality) to their diabetes dilemmas from hundreds or even thousands of people online – move away from traditional healthcare, seeing it as slow-moving, inconvenient to access, and overly complex – even if it likely to deliver the ‘right’ answers?
Accessing online community and healthcare together is obviously the best of both worlds for patients, and therefore a better outcome would be for healthcare providers and online patient communities to work together to create hybrid models of care. Such a model would honour and allow the shared, deeply valuable patient experience, while also managing commitments to safety and quality. A hybrid model takes agility, responsiveness, and a commitment to figuring out new ways of managing patient safety in online environments, as the Type 1 Diabetes Family Centre discovered when it launched its online communities in 2015. However, while we knew our online communities would be valued by our people, we also discovered how much they helped our organisation to communicate with, understand, and ultimately serve our community in meaningful ways. Our online communities have helped the Family Centre become a more authentic and connected organisation, and we wouldn’t have it any other way.
 Stanford University, 2014. New research shows how to keep diabetics safer during sleep. Online here: https://scopeblog.stanford.edu/2014/05/08/new-research-keeps-diabetics-safer-during-sleep/. Accessed 31 October 2021. Diabetes Australia. History. Online here: https://www.diabetesaustralia.com.au/about-us/history/. Accessed 31 October 2021. Simmons, D., Bunn, C., Cohn, S. and Graffy, J. (2013). What is the idea behind peer-to-peer support in diabetes? Diabetes Manage: 3(1).  Hodgkin, P., Horsely, L. and Metz, B. (10 April 2018). The Emerging World of Online Health Communities. Stanford Social Innovation Review.  Hodgkin, P. et al. (2018).  Hodgkin, P. et al. (2018).