The biggest change in the collective influence people with diabetes (PWD) have on diabetes care is about to happen in the coming few years. (I am not really writing about finding the ultimate cure here – for that as we all know that is just 5 years away. (Circa since 1964.) No the change I am writing about is the influence of the informed, knowledgeable, educated, empowered and connected patient via the Diabetes Online Community.(DOC)
This group of patients, families, friends and supporters, is something relatively new in the 9 years since my diagnosis as a T1D. It is driven mainly by the proliferation of social media and the desire to seek out and provide peer support to one and other, and to develop advocacy for diabetes in general. Participants in these informal networked online communities are in almost daily contact with each other. They cross social, political and geographical boundaries. Their numbers, level of sophistication, influence and expectations of what constitutes quality healthcare provision are rising very quickly.
On a personal level the DOC has made a transformational positive impact on my own health and well being and my psycological relationship with my diabetes. POSSIBLY MORE THAN ANY CLINCIAN EVER HAS. I do not think I am alone in this assumption.
I have a livelong chronic condition. If I can contribute to those communities by sharing my experiences whilst also learning from others, and this improves my and others quality of life, then so be it. I think it is a worthy investment of my time and energies. It appears many others with diabetes also feel the same way given their actions and contributions to the DOC.
I believe it is also our duty to be honest and open, to a level we each individually find comfortable, in contributing to the collective lived experiences of PWD. These experiences can then be utilised to improve the current good, bad, and indifferent care we receive. It can also contribute and inform the future research and healthcare provision agendas.
The focus of this blog is not to detail reasons for the meteoric rise of the DOC. The reasons why PWD, their families and supporters contribute and gravitate to the DOC have been documented far more eloquently than I could by people like @sowerbee
The reason for this blog is to explore how the other organisational stakeholders in the DOC can develop successful strategies to interact on a functional level with the DOC, for the benefit of all. By organisational stakeholders I am referring to Governments, Clinical Bodies, Health Service Commissioners, Clinicians and Health Care Professionals, Public and Clinical Health Researchers, Charities and Non Government Organisations, Pharma, Telecoms, Technology Developers etc.
However this also raises the question- How do patients and families in the DOC interact with these other stakeholders? At the end of the day they hold the keys to providing improved healthcare, quality of life and hopefully the cure. (5 years from now obviously). At the moment these relationships are embryonic and immature and are treated with suspicion by some on both sides. The other stakeholders appear unsure of what to make of, and how to engage with the DOC. I also observe a small minority of patients who are uneasy about them engaging with the DOC at all, as this may change the enthusiasm, the by the people for the people ethos, that appeals to many who use the DOC.
However as patients and families in the DOC we are a body of people with huge levels of knowledge and insight into the everyday lived experience of diabetes. We know where the gaps in current healthcare provision are, what needs to be improved, what needs redesigned to maximise its potential, what needs to be binned and started from scratch, because we live with it day in day out, year in year out. This information is vital to inform the development of new tools, new devices, new education programs, new clinical pathways, new training of healthcare professionals, new technologies, new translational research for the benefit of all stakeholders in the improvement of quality of life when living with diabetes.
The question I ask myself is how the DOC works as an efficient, trusted and knowledgeable agent for change, as well as for our own peer support, advocacy and enjoyment. When I talk about agent for change I mean things like influencing....
• Improving healthcare provision and care
• Reducing the postcode lottery of current diabetes healthcare provision
• Developing personalised solutions to healthcare needs
• Providing carbohydrate counting education and skills for all those that need it
• Integrating technology, monitoring and syncing that is of dual simultaneous use to me and my care team
• Improving identification and care of mental health related issues in diabetes care pathways
• Reducing the cost of diabetes care
• Improving education, training and support for parents of children with diabetes and all PWD
• Developing new cost effective patient clinical interactions- making the most of patient time in front of the HCP’s
• Integrating social media into the patient clinician interaction for easy access to contact, info, advice and feedback. At a very basic level - Why can’t I email my clinic???? Why don’t they email me?
• Developing health and well being measurements beyond the Hba1C test (e.g. Is measuring success or failure only by a flawed metric the best we can do?)
• How do researchers interested in diabetes utilise and interact with the DOC without destroying its unique selling points and attractiveness to its contributors (see @Sowerbee Blog)
• Developing a truly national (UK) diabetes registry where patients and families who are potentially interested in participating in research are identified.
• Rolling DAFNE out across the whole country (UK) – The scientific and economic evidence base as to why this should be done is already available; the improvement in patient outcomes is also there for all to see.
*Can someone please explain the barriers to this happening to me? I hear week in week out people crying out for the knowledge and skills this course brings to quality of life of those living to T1D.
These are just a few items I can think of off the top of my head as I write this blog. I am sure you will have your own and have probably talked about them in the DOC.
Patients, families and organisational stakeholders are in the main trying to achieve the same outcomes. The one consistent is we are trying to improve the quality of life of people with diabetes; we just come at it from different angles, and here lies the problem. Do they trust us and do we trust them?? As @health_Shmi tweeted a wee while ago about her relationship with diabetes, “It’s a dance. We are still learning the moves and have not quite got in sync yet”.
Well I feel the same can be said about the DOC and its wider diabetes stakeholders.
By its very nature the DOC is organic in its development, it has little structure, it is participatory in its design, i.e. it has no boundaries and goes where the contributors take it. There are few rules. This structure and model does not lend itself to synergy with the other organisational stakeholders. These organisations are fond of, and look for, stability, longevity, economic resilience, clearly defined management structures with known influencers and identified agents of change. In essence linear structures with tried and tested command and control points, that can be assessed, monitored and analysed for inputs, outputs, efficacy, validity and cost benefit. This therefore makes the relatively new DOC quite prickly for a lot for these organisational stakeholders to really get a handle on. However that is their problem to overcome and perhaps ours to smooth their journey.
What is true is that as PWD become more knowledgeable, empowered, and in contact with one and other, the existing model of diabetes healthcare provision (the top down approach) is being challenged. The more forward thinking clinicians and stakeholders are grabbing this opportunity to inform their practice through interaction with this new body of lived experiences the DOC provides. This then contributes and informs the development of care pathways, service and support provision utilising a bottom up approach to service delivery. Great examples of this are @parthakar, @Paddy_English, @teambloodglucose, @gbdoc, @DiabetesSocMed
Unfortunately many others do not like to rock the boat, get out of the comfort zone and challenge the current status quo. (See the excellent blog via @anniecoops by @helenbeven ow.ly/npMR4 on agents of change, boat rockers and rebels in the NHS).
The reality is those who do not embrace the future will be left behind and overtaken by those who do. As Tony Benn of all people once said…..
So in summing up
1. The collective lived experience of the DOC can provide very powerful insight. This is extremely useful to the other non patient stakeholders in developing the future of diabetes provision. This interaction is something we should not be scared of. In fact is necessary to obtain the level and quality of care, future products, technologies and healthcare we desire.
2. Non patient stakeholders- Get your acts together! This community is only going to grow and become much more influential on a local, national and global scale.
3. Clinicians, researchers, other non patient stakeholders - take note of what is happening here, understand it, use it, but DO NOT DESTROY IT. We are very protective of what we are building in the DOC!!!!!!!!!! (See reasons for PWD joining the DOC. I believe the previously quoted blog by @sowerbee speaks for most contributors. If you have not read it already you should!)
So until 2018 when the cure will be found (2013 +5 years) please think about utilising No.4
4. Put the patient lived experience at the heart of developments undertaken in our name, whilst utilising our collective lived experiences as the basis for those changes and improvements.
The Glucose Kid