UK endocrinologist and all round good guy, Partha Kar has been musing about patient involvement in funding allocations on his blog. I can’t help but respond, as Partha notes in his blog, he is thinking aloud and so am I, also playing devil’s advocate.
As a side note I have interacted with Dr Kar on twitter and he is genuinely interested in patient thoughts and is an advocate for patient involvement and the patient voice, so I trust he’ll take this as another step in the “debate”.
“Policy role can be much fun…it can also be very troubling…making judgement calls which may affect many is never easy- and it does always make me wonder- how much benefit would direct patient involvement help? I mean- lets get this right- absolutely a must, we all should do it…but how much would that help if- say- there came the question of allocating money to services?”
He goes on to suggest that patients will think in silos just like everyone else
“could patients help or even directly advise where to allocate that money?
Or would they be dictated by their own niche? …The argument that those who live with it- know more what to do with the money also falls a bit flat- when say a Type 1 diabetes person has to make a call over wider budget of diabetes- lest[sic] face it- their knowledge of living with Type 2 diabetes is the same as mine- nearly non-existent. Tricksy, isn’t it?”
Have you ever wondered how your diabetes would react if you were able to test it under “laboratory conditions”. Well I came pretty close last week-damn close to being the perfect diabetic-for 5 and a half hours anyway. Continue reading →
So it was Thursday morning, my pump reservoir was empty but when I went to refill it, I found the button I needed to press wasn’t working. I pressed harder, I gave it a little break and put it in a cool place. Alas no, my very out of warranty pump had finally let me down.
Time and again I find myself nodding at conferences or lectures when I hear a “patient’s” story of how the internet has or does make a huge difference to their quality of life/management of a medical condition or disease and its treatments. So it was again as I listened to e-patient Dave who told his story of engagement with the healthcare system following his diagnosis with stage 4 renal cancer.
Dave’s basic request “let patients help” seems unassuming enough and his definition of ’empowerment’ also seems like a modest aspiration. Continue reading →
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.