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?”
So Dr Kar is content to raise questions and suggest problems that might make patient involvement in resource allocation unhelpful. That’s fine as somebody with a senior position in the NHS and as I understand it, the ability to have input if not some say into budgets these are all good questions that must be asked.
I do, however, have some questions of my own:
Never, does Dr Kar seem to question his own right to be involved in making resource allocation decisions. He acknowledges he has very little knowledge of type 2 diabetes and yet he seems content to soldier on making decisions that affect others despite this lack of knowledge.
Why do you assume that patients’ particular biases are problematic for involvement in policy whilst those of health care professionals are not? I always hear diabetes educators banging on about needing more funding for education, podiatrists wanting more funds devoted to foot care, dietitians wanting more money for healthy eating programs and so on and so forth. This is acknowledged and yet there seems to be ways around it for professionals.
Is Dr Kar assuming that policy decisions can be made by a consortium of health care professionals who all have their own biases but there can only be one patient ‘representative’ having a voice? Why not have equal numbers of patients and HCPs making funding decisions, that overcomes the bias and niche mentality surely? Surely no funding process involves just one professional, why assume one patient is an adequate representation of the patient voice?
Dr Kar says’
I would be fascinated to see what top priorities those living with diabetes choose and what are the ones evidence says should be
The implication here is that priorities can, unequivocally be based upon objective evidence. Really? Life is so much more complicated than that. Take prevention of type 2 diabetes as an example. Given the staggering growth in numbers of people developing type 2, it is obvious that this should be a priority area, right?? Well the problem as I see it is there is very little evidence to support the efficacy of any strategies or treatments that prevent type 2. I have seen a number of surgeons supporting bariatric surgery as the most efficacious prevention strategy for type 2, but should that be the solution for everyone at risk of type 2 including children? What about prevention for those who are not overweight or obese yet-surely an once of prevention is worth a pound of bariatric surgery? Now that I come to think of it those promoting bariatric surgery are always surgeons, hmmm, they would seem to have a financial incentive to promote more people undergoing surgery. (That’s it let’s ignore practicing doctors as their interests are conflicted).
There are some policy areas supported by good quality research, for example, type 1 diabetics having an a1c of less than 7 or is that 6 now? And how far should we go in encouraging that? Pumps? New insulins? CGM?
It’s these crunchy issues of research allocation that are tricky and not at all clear cut. Everybody, health care professional, politician, bureaucrat and patient has their own biases. Why is it only patients’ seat at the table that is being questioned?
Given that allocation of funds is part evidence based and part ethics, why are clinicians even assumed to have a place at the policy table? Maybe it should be left to epidemiologists, ethicists and economists to be making funding decisions?
You can read Dr Kar’s blog here in full: