It’s always great when a piece of research confirms what you know to be true but others have doubted. It was super good timing when I came across this great finding published just a couple of weeks ago in the Journal of Internet Medical Research, 2017, August 17 19 (8):e 280
Engaged patients increase information flow, expand propagation and deepen engagement in the conversation of tweets compared to physicians and scientists.
The psychosocial aspect of diabetes is a bit like the weather everyone’s always talking, but nobody does a thing about it. Such was my view preceding DX2 Melbourne where I was one of a cast of thousands participating in a webcast about mental health and diabetes.
The consensus view (I think it was unanimous) was that psychosocial care should be normalised as part of diabetes healthcare. I agree 100% with this. I recommend Renza’s post at Diabetogenic about the webinar and particularly the importance of ending the stigma around mental health. Frank of Type 1 Writes was also on the panel and has written insightfully about this topic too. The focus of the panel discussion was on seeking help at times of distress but I’d like to take things one step further than this and talk about
It is my contention that not only does standard diabetes care fail to heed prevention strategies for psychosocial distress but it actually causes or exacerbates mental health issues in people with t1 diabetes.Continue reading →
Healthcare is a highly structured environment and everyone has their assigned rights and responsibilities that belong to those roles. Those within the system are highly motivated to maintain the status quo to keep the forces of chaos subdued.
Diabetes, particularly type 1 is troublesome to the health status quo. For starters none of us can ever be the ideal patient. We can’t be healed in the “you’re good as new” kind of way and the professionals have to hand over their traditional roles to us. We are the ones doing the injections, the blood testing and keeping track of our health. It is little wonder that many professionals view diabetics as troublesome patients.
As if this isn’t bad enough, many of us with diabetes (and other health conditions of course) choose to speak to each other and publicly about living with diabetes and we’ve been able to do so very effectively via social media. This sort of activity is threatening to the system and the gatekeepers want to fight or control it. Continue reading →
DX2Melbourne was a diabetes bloggers conference hosted by Abbott Diabetes Care. My travel and accommodation expenses to attend this conference were paid by Abbott but any opinions expressed are entirely my own and I am under no obligation to blog about the event or any Abbott product.
I recently came across a health/medical article that expressed concern about the level of variation in paediatric diabetes treatment between different paediatric endocrinologists. I thought the assumption that there was one best practice approach interesting especially in light of the statement, Continue reading →
Actually I have no idea why I have diabetes. If I really knew exactly why type 1 occurs I’d be publishing in the BMJ or the NEJM, I just wanted to talk about the language of being a diabetic as opposed to a person with diabetes. Continue reading →
Sometimes Twitter does your head in, and I’m not talking about the trolls.
Last week DiabetesUK tweeted
Possibly seeing a marketing opportunity, @DiabetesAU (NOT it must be noted Diabetes Australia but the twitter handle of Natalie Wischer, who is apparently the CEO of the National Association of Diabetes Centres NADC) was quick to tweet her whole-hearted endorsement-presumably on behalf of NADC, as indicated by the first person plural.
We agree! We will discuss this & more at the Australasian Diabetes Advancements and Technologies Summit (ADATS)
Yippee!! I thought, how great there’s going to be a whole conference on diabetes technology in Australia AND they are totally into patient choice!
I rush off to the link so thoughtfully provided at the end of the tweet to book tickets, only to find this conference is patients excluded. You need a health care provider number to register. So no patient choice here BUT never fear patient choice is going to be discussed by a bunch of doctors and DNEs. My irony meter is going off the scale.
Don’t despair though fellow-patients, despite the ban on our attendance, I’m assured that the patient voice will be heard. One person with diabetes and a health care professional are going to present on this “very important topic”. Ah right, I check the program, a person with diabetes is going to get 5 MINUTES in the program to present the consumer perspective and a psychologist (who doesn’t have diabetes) is going to get 20 MINUTES to speak about psychological impacts.
Whilst I guess 5 minutes is better than no minutes for a consumer voice to be heard-I’ve got to say I find the 5 minute time slot rather insulting, especially as the speaker, @RenzaS is an experienced and professional presenter with many years experience at DAVic and in advocacy, it’s not like she can’t handle a longer time slot. 5 minutes is the allocation for “hearing the patient voice”. Hmmmm.
That aside, however, neither a 5 minute consumer slot or a psychologist presenting professional insights is patient inclusion, nor does it have anything to do with supporting patient choice in technology. Inclusion and patient choice is about allowing patients to access information to enable informed participation in healthcare.
I understand that professional organisations run conferences for their members and sometimes those organisations exclude non-members-it’s their conference after all. I also understand prohibitions on “consumers” attending conferences where drug companies advertise their products.*
This is fine, just don’t boast about your support for patient choice when your implementation of that support is to discuss it at a conference of health care professionals from which patients are deliberately excluded. This just serves to highlight how very keen many professionals are to exclude “patients” from the dialogue of healthcare.
Without access to information, the patient will never be able to take control of their health decisions, I wonder if that’s the real reason we’re excluded, as the old saying goes, knowledge is power.
*@DiabetesAU tweeted to me that patients could not attend because of pharma sponsorship of the event. I have perused the program http://nadc.net.au/wp-content/uploads/2017/03/ADATS-Program-26.6.17-zip.pdf as at 7pm 3rd July 2017 and I can find no disclosure of links to pharmaceutical or other commercial enterprises at all. I would have thought transparency on commercial sponsorship would have been desirable to those attending, it is to me and I’m not even subject to the rules on pharma marketing.
I was one of the many pwd who was stunned back in 2015 when the UK’s National Institute for Clinical Excellence (NICE) issued its Guidelines for Type 1 Diabetes in Adults. These guidelines recommended a “target” HBA1c of less than 6.5%. The previous target was 7.5%
What I found stunning was that so few people managed to achieve an a1c of 7.5% or less and yet here they were setting an even lower target. For the record -the UK National Diabetes Audit showed that 29% of adults with type 1 recorded an a1c <7.5% (or 58mmol in the new measure) in 2015/16 AND fewer than one in fifteen (i.e. less than 10% of pwd) recorded an a1c of less than 6.5%.
It makes you wonder what exactly is the point of setting this number, what does it mean and is it sensible to set a target that appears cannot be achieved by 90% of people.
These and other great questions and insights have been occupying my mind since I attended a conference for online health advocates on the weekend.
We’ve come a long way baby!No longer content to be dismissed as irrelevant unless we agree to be nothing more than amouthpiece for professional organisations (be they doctors, hospitals, pharma or professional disease corporations like DA) advocates are telling their own stories, connecting supporting and empowering each other and advocating for what ‘we the people’ really want. Slowly but surely advocates are bringing the voice of the ‘patient’ into the dialogue of health care and we are seeing we DO make a difference. It was wonderful to share our experiences and to see how much we had in common. It was great to catch up with other members of #ozdoc!
Diabetes is different I may be biased but diabetes advocates rock. I got the impression that those of us in diabetes were across the issues and had loads of experience in the social media space already whereas many other conditions/diseases were still just dipping their toes into the social media space in Australia. I think where we differ from most other conditions is the sheer volume of treatment decisions we make every day. So often (and again at this conference) the patient voice is presented as though it is competing or trying to replace medical information. In diabetes that’s just so yesterday. Treatment is in our hands and the minutae of basals, boluses, mud cake and triathlons is beyond healthcare professionals anyway. Sure, we shouldn’t give medical advice but I have often spoken of what worked for me and I can’t count the number of times I’ve decided to try what somebody else says has worked for them. I really wish doctors would realise we have no interest in competing or trying to supersede them.
“Fear and humiliation and shame are terrible things to live with.” Luke Escombe
Luke is a musician, comedian and advocate for Crohn’s disease. His speech was both really funny and inspirational. The quote above is powerful in that I think a lot of people with medical conditions live with fear, humiliation and shame. Be it because they have an ostomy, look different in some way or perhaps they don’t achieve the level of diabetes management that some random doctor or nurse feels is appropriate. Let’s all support each other in standing up against fear, humiliation and shame AND speak up for people who don’t (yet) have a voice.
*Use your vulnerabilities as a Superpower Nick Bowditch was inspirational in encouraging us to reframe our stories. He shared that he struggled with depression and addiction BUT he reframed this to tell us he has incredible empathy, he was aware of his vulnerabilities and because of that he could see ours too and (here’s the killer)-he doesn’t care that we have vulnerabilities.
There’s enormous power in that reframing, in turning the tables so to speak on those who might judge him for what they perceive as weaknesses.How might you reframe your story today? (I don’t just mean in diabetes but to reframe any of your trials, sadnesses, grief or vulnerabilities so that you can tell a different story). Often you have to go through bad things, failure, loss etc in order to discover your superpowers. As Nick said:“Fear, pain, grief etc are gifts wrapped in s#1t!”
Janssen-Cilag Pty Ltd paid for my travel and accommodation expenses to attend this conference. All thoughts and opinions expressed here are solely my own and do not reflect the thoughts or opinions of Janssen or J&J.