I have been attending the national Australian Diabetes Society and Australian Diabetes Educators (ADS/ADEA) scientific meeting this week in Perth. This is my 16th year working in diabetes, with only about 3 years during that time where I have not attended one of these annual meetings. I will never forget the first time I went, wide eyed and totally unaware of what was to come. As someone who lives with type 1 diabetes starting out my journey as a clinician in the diabetes field was not smooth sailing to say the least. I spent a lot of time outreaching and networking with people in the industry, and was warned by some as I began this journey, that it would not be easy. I found lots of open minded people, who welcomed me with my crazy ideas of online counselling and creating community using the baby internet; but I also came across closed minded, frightened health care professionals, who seemed worried about a “patient” working with other people with diabetes. One diabetes educator even said to me that people with diabetes shouldn’t work in diabetes as they “carry too much baggage”….I was crushed and sat and cried. However I did not let this stop me, and the rest, as they say, is history.
The information came at me those first few conferences like a truck, and later, as I started my diabetes education qualifications, like a runaway train. Although I had a social work degree and at that time, 22 years living with diabetes, I had no idea of all aspects, the science, the different ways diabetes works, the biology, the research that was going on, and the language. It took me a very long time to be able to sit through a lecture or session about diabetes complications and the risks of life with diabetes. As I learned more, I became more at peace with my own diabetes. Understanding more enabled me to understand my body, and my mental health, in ways I had never had access to before. It made me think that people with diabetes really should be given a lot more information about the actual condition when we are diagnosed, and kept up to date about research and changes in the field. As we now have access to so much more of this with the internet and social media, I think people are far more informed than those of us diagnosed many years ago.
As I have traveled through the past 16 years, qualifying as a diabetes educator, working in a range of settings as a diabetes counsellor, and now, working on my PhD as a researcher in diabetes, much has changed. I still find it hard to sit through a lecture that has images of rotting feet, or damaged eyes, but in general I feel comfortable. I know lots of people, I understand a lot of the science, and I get the politics. I have made very good friendships that have lasted, and I make new ones each time I attend one of these meetings. I wear 3 hats when I am at these events – consumer, health care professional and academic – and sometimes that can be tricky to navigate. Mostly I see it as a plus.
Over the years I have met other people with diabetes who work in diabetes. I have heard beeps as someone else checks their blood glucose during a lecture; seen others dialing up their pump; spent hours talking with other researchers and health care professionals who are also consumers. The move to include people with diabetes who are not health care professionals at the scientific conferences has however been slow in Australia, but this year, a small contingent have been included. This has opened up more conversations about the inclusion of those living with diabetes, at scientific meetings – “nothing about me without me”. In other countries this is standard practice. Some people feel this is vital, others are not convinced. There has been a lot of fantastic sessions so far this week. One of the core themes of the conference has been the idea of “patient” or “person” centred care. This is not a new concept, but is taking off in diabetes and in health generally. So what does person-centred care mean? It refers to a type of care where the care provider focuses on the needs and resources of the patient, and can be defined as “co-creation of care between the patients, their family, informal care takers, and health professionals “(Pirhonen, Olofsson, Fors, Ekman, & Bolin, 2017). This definition is becoming widely used by many international organizations.
Coulter et al. (Coulter et al., 2015) defined personalised care planning in their Cochrane review including the following components:
1. Patients and clinicians together identify and discuss problems caused by or related to the patient’s condition(s), giving due consideration to both clinical tests and treatments and the practical, social, and emotional effects of their condition(s) and treatment(s) on their daily lives.
2. They then engage in a shared decision-making process involving goal setting and action planning, focused on determining priorities, agreeing about realistic objectives, solving specific problems, and identifying relevant sources of support.
3. The agreed plan is documented and followed up.
So it is a true partnership rather than the health care provider telling you what you are doing wrong or right, and then telling you how you have to go fix it. It acknowledges the expertise on both sides – as the person living with diabetes you are the expert in your own diabetes, your body and your life, and often may have ideas from your own research about the direction your care should take. As a person who is highly trained, spends all of their time seeing many other people with diabetes, has a broad overview of what is happening out there, access to services and resources, and keeps up with latest research and networks, the health care provider is positioned to guide, inform and support you in these choices, and make recommendations where needed. This relationship changes over time – sometimes you take the lead, sometimes your health care professional does, depending on the issues. I know during pregnancy for example, I relied on my health care providers to guide me and tell me what was needed, more than at any other time, but I made decisions about lots of things during the journey, and did most of the heavy lifting to get to the birth of my beautiful boys. A lot of the time I go to my diabetes health care providers for a chat, to see how things are going complications wise, find out if there are any changes in my health and any needs for a different approach. Then I get on with doing diabetes my own way.
One of the other things that has received a lot of attention at ADS/ADEA this week is the use of language. I advocate for changes of language in the way you see and manage your own diabetes – using words like high and low, instead of good and bad, and checking your BGL, rather than testing, is just one example. But for care to be truly person-centred, the language of health care providers and in particular, doctors and academics, needs to change. Too many times I have sat through presentations over the years, cringing every time someone says “adherence” ” compliance” and “poor control”. Sadly there is still a very long way to go here, and I sat in a number of sessions with this language being used, but it is heartening to see such a big focus on that this year. Hearing someone talk about non-adherence implies the power lies with the health care provider, and that is not preson-centred in any way.
The issue of inclusion of more non-health care professional people with diabetes at the scientific conference is only at the beginning I am sure. There are mixed feelings amongst both camps and it is a complex issue. I will say that the knowledge you gain at these conferences can be enlightening, and frightening. It can be mind blowing and confusing. But the opportunity for true person-centred care that is inclusive and collaborative is an art, and this can only be enhanced by the inclusion of both sides of the partnership – the best way to do this is to be decided.
What are your thoughts? Would you pay to go to a scientific conference and do you think you have a person-centred partnership with your diabetes health care providers?