The world of hospital/medical funder databases is a confusing one - even (I believe) to some of those familiar with the process. I was not familiar with any aspect of diagnostic coding, health resource group (HRG) coding, or even what the definition of an 'admission' is within the NHS*. I didn't know what a 'disposal' was, or to be wary of the difference between 'episodes' and 'patients'** when counting complications and calculating rates. So I've had to learn as I went along. And I've made lots of mistakes. One of the purposes of this blog is not just to share what I found, but also to help others to undertake similar research without such a steep learning curve.
While freedom of information legislation and hospital/funder databases will be different everywhere, some of the issues I've encountered will be similar.
Below is an example of a request I wrote around 18 months after beginning my research and in which I refined my original questions to generate more useful results.
Dear Sir/Madam,
Last year you kindly provided information on circumcisions and subsequent hospital presentations in 2009. I am now writing to ask if you would please provide the following:
1. a breakdown of all procedures funded under HRG codes: LB29B, LB30C, LB31Z, and LB32C in patients aged 0-17 in calendar year 2011, to include age, diagnosis, OPCS code, and length of stay.
2. what was the number and cost of non therapeutic circumcisions of male patients aged 0-17 in calendar year 2011?
3. please use a patient ID matching check to establish how many of the patients in question 2 presented in A&E within 30 days of the surgery, and provide age, presenting complaint and time in days from the surgery.
4. as above, please establish how many of the patients in question 2 were readmitted to hospital within 3 months, providing age, diagnosis on readmission, source of readmission (eg emergency or planned), time in days from the surgery and length of stay.
5. finally, as above, please tell me how many of the patients in question 2 have been subject to another urological procedure in the period from the surgery to the present date - please provide brief details including age, OPCS code and time between original surgery and the new procedure.
With many thanks for your help
Laura
The response to these questions can be found here and my annotated version of the main findings here. It reveals a substantial toll of harm, suggesting that relevant episodes in A&E were around 8% of original surgeries, with admission episodes at >3% and admission episodes with length of stay (LOS) of 1 day at >1%. This is relevant because it means complications were not rare; even the most serious complications were not rare***.
If you want to read more about non therapeutic circumcisions funded by the NHS in Leeds, I've also uploaded a five year summary of incidence and cost, which also has a tab listing all the cases of babies who spent at least 1 day in hospital for treatment of complications, and a tab covering the surgical follow ups. This information should be read in conjunction with Kidger, Haider and Qazi's paper on Acquired Phimosis after Plastibell Circumcision in Leeds. I'll explore some of the oddities of that paper on my commentary blog at a later date.
See www.figshare.com/authors/Laura_Macdonald/654498 for samples of more NHS returns.
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* The term 'admission' can include being held in an area of A&E for part of a day or spending part of a day in a ward - these admissions will be coded as having a LOS of 0 days. These shorter admissions matter because once in the system, the cost of being held in a hospital for treatment is significant, whether or not you actually spend the night.
** the difference between individuals experiencing complications and episodes of complication presentations seems an important one for analysing circ. adverse effect data. It seems that - perhaps particularly with little children - those who experience issues post circumcision may be brought to A&E or a doctor several times. Clearly this has emotional implications for the individual and the family, as well as resource implications for the funder who picks up the tab...I think it's also a way of showing just how invasive and painful male circumcision can be. In one case reported by a hospital, a small child repeatedly presented with genital pain post circumcision more than a year after the original operation.
*** A paediatric urologist informs me that rare generally means less than 1 in 100. If you understand otherwise, please tell me in the comments below, and ideally provide a link to guidance or a research paper.
While freedom of information legislation and hospital/funder databases will be different everywhere, some of the issues I've encountered will be similar.
Below is an example of a request I wrote around 18 months after beginning my research and in which I refined my original questions to generate more useful results.
Dear Sir/Madam,
Last year you kindly provided information on circumcisions and subsequent hospital presentations in 2009. I am now writing to ask if you would please provide the following:
1. a breakdown of all procedures funded under HRG codes: LB29B, LB30C, LB31Z, and LB32C in patients aged 0-17 in calendar year 2011, to include age, diagnosis, OPCS code, and length of stay.
2. what was the number and cost of non therapeutic circumcisions of male patients aged 0-17 in calendar year 2011?
3. please use a patient ID matching check to establish how many of the patients in question 2 presented in A&E within 30 days of the surgery, and provide age, presenting complaint and time in days from the surgery.
4. as above, please establish how many of the patients in question 2 were readmitted to hospital within 3 months, providing age, diagnosis on readmission, source of readmission (eg emergency or planned), time in days from the surgery and length of stay.
5. finally, as above, please tell me how many of the patients in question 2 have been subject to another urological procedure in the period from the surgery to the present date - please provide brief details including age, OPCS code and time between original surgery and the new procedure.
With many thanks for your help
Laura
The response to these questions can be found here and my annotated version of the main findings here. It reveals a substantial toll of harm, suggesting that relevant episodes in A&E were around 8% of original surgeries, with admission episodes at >3% and admission episodes with length of stay (LOS) of 1 day at >1%. This is relevant because it means complications were not rare; even the most serious complications were not rare***.
If you want to read more about non therapeutic circumcisions funded by the NHS in Leeds, I've also uploaded a five year summary of incidence and cost, which also has a tab listing all the cases of babies who spent at least 1 day in hospital for treatment of complications, and a tab covering the surgical follow ups. This information should be read in conjunction with Kidger, Haider and Qazi's paper on Acquired Phimosis after Plastibell Circumcision in Leeds. I'll explore some of the oddities of that paper on my commentary blog at a later date.
See www.figshare.com/authors/Laura_Macdonald/654498 for samples of more NHS returns.
** the difference between individuals experiencing complications and episodes of complication presentations seems an important one for analysing circ. adverse effect data. It seems that - perhaps particularly with little children - those who experience issues post circumcision may be brought to A&E or a doctor several times. Clearly this has emotional implications for the individual and the family, as well as resource implications for the funder who picks up the tab...I think it's also a way of showing just how invasive and painful male circumcision can be. In one case reported by a hospital, a small child repeatedly presented with genital pain post circumcision more than a year after the original operation.
*** A paediatric urologist informs me that rare generally means less than 1 in 100. If you understand otherwise, please tell me in the comments below, and ideally provide a link to guidance or a research paper.
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