Patient-centred care is a bit of a buzzword and a few sessions at #ADSADEA were devoted to it. There’s no definition of the term but it seems to refer to individual health practitioners listening to and responding to patient’s concerns during consultations. That’s all good and well but is that all there is to patient-centred care? It got me wondering about what the health care system would be like if it was run by people with diabetes instead of the government/doctor/bureacracy mash up we see today.
Here are some ideas I had:
Get rid of transition!
I have yet to meet a person with type 1 who has said that they prefer the adult diabetes system to paediatric care. Sure I have heard all the explanations about what’s wrong with the patient who doesn’t transition well but I wonder whether some of it isn’t more about what’s wrong with the adult system. Paeds is generally much more supportive, they see diabetes in a family context and they are (at least for now) very much type 1 focused. When you are turfed into the adult system, you’re a minority “disease”group over run by much older people and much of the system seems judgemental rather than supportive. Turf the artificial peadiatric/adult distinction (I mean shouldn’t hormone doctors be ok with treating kids, adolescents and adults) and establish type 1 centres of excellence. I can see these being popular in the public and private sectors.
BreakDown Speciality Silos Time and again, sourcing medical and allied health practitioners outside of endocrinology who have even a rudimentary understanding of type 1 diabetes is well nigh impossible. If care was patient-centric I wouldn’t have to manage the ignorance of well-meaning but diabetes ignorant health care professionals who operate outside of the diabetes sphere.
If we could link all medical health practitioners with the type 1 centres of excellence such that if you need a physio, speech pathologist, oncologist or psychologist then they will be able to treat you adequately. Having to explain that you didn’t grow out of your “juvenile diabetes” or explaining that you’re not a “very bad” diabetic to have been “put on” an insulin pump is wearying and often lack of knowledge of diabetes can have deleterious health effects, e.g. GPs and physios telling type 1s that a steroid shot won’t affect their blood sugars! I knew from chatting with other pwd that steroids are the devils work with control but many HCPs don’t know that.
Accept Permanent ReferralsThis and other bureaucratic nightmares are a pain in the neck. I have diabetes, have had it and will have it all my life. Wasting my time and money to visit a GP to get them to refer me to the ophthalmologist that has been treating me for years (and I’ve seen far more often than the GP) is just a useless waste of time. Bureaucracy, you can fix this up, doctors have a financial incentive not to accept the permanent referrals but paying for GP visits to get referrals is a waste of money, Medicare just fix it. NB Doctors, patient groups would support you to remove the financial deceptive to accepting permanent referrals.
Move out of the 1950s!There was a really interesting dichotomy around technology at the conference. Those of us with diabetes are all tweeting, and excited about the new technology available to help us manage diabetes. The sessions about doctors using technology contained A LOT of excuses around “problems with technology”.
Here’s just one little thing though. If I want to communicate with a doctor about my health using email, surely I should be able to do so. That decision should be between me and my doctor and some doctors do communicate that way but there’s huge kerfuffle about privacy issues such that most doctors won’t use electronic communication. Unbelievably they still use faxes!!
Make Tools Accessible to PatientsI love that Abbott made their Freestyle Libre available directly to patients. I didn’t have to see a HCP and get their permission to use this device. Not only does this give me more power and not waste HCP’s time, but it allows me access to medical devices much more quickly. If we’re serious about patient-centred care then it’s the patient who should be choosing the tools not the HCP!
That’s it for a start on what I imagine patient-centred diabetes care would actually look like. I’d love to hear more ideas about what you imagine patient-centred care would look like.
Before I attended ADS-ADEA’s Annual Scientific Meeting I did a little survey of what people with diabetes were most interested in hearing about at conferences. As the survey was largely completed by my friends in the D world, it is unsurprising that they were almost entirely type 1s and most had had diabetes for at least 20 years. The topics of most interest were new technology, research with only a few more saying stuff that was relevant to life with D now as opposed to the cure and psychosocial issues. Many people also said the main benefit to them of attending D conferences was the opportunity to socialise with other people with diabetes.
So here’s my best effort at rounding up the categories of most interest from ADS-ADEA 2017:
Do you hear any sensible person saying things like
“Don’t look at any television news/read the newspapers or news magazines because they’re full of false information and negativity.” or
“I never go to parties or social gatherings because they’re full of negative people or somebody might say something that’s untrue to me.”
No? Funny that neither do I. Of course the simple and obvious answer to comments like that is to choose your media source and/or your social events more carefully and be discerning about what news or information you view as credible. Continue reading →
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 →