Dr Trevor Kerr has previously written for Croakey about the need for better data in the health sector. Below, he writes about some of the problems he had recently when trying to extract his own personal data from Medicare:
“Atul Gawande’s latest essay at New Yorker is a brilliant commentary on reform of health care in the US, compared to the efforts required to reform agricultural practices from 100 years ago.
None of this is as satisfying as a master plan. But there can’t be a master plan. That’s a crucial lesson of our agricultural experience. And there’s another: with problems that don’t have technical solutions, the struggle never ends.
I work in an academic medical group in Boston with more than a thousand doctors and a vastly greater infrastructure of support, and we don’t know the answers to half these questions, either. Recently, I had a conversation with a few of my colleagues about whether we could accept a bundled payment for patients with thyroid cancer, one of the cancers I commonly treat in my practice as a surgeon. It seemed feasible until we started thinking about patients who wanted to get their imaging or radiation done elsewhere. There was also the matter of how we’d divide the money among the surgeons, endocrinologists, radiologists, and others involved. “Maybe we’d have to switch to salaries,” someone said. Things were getting thorny. Then I went off to do an operation in which we opened up about a thousand dollars’ worth of disposable materials that we never used.
We have better information about crops and cows than we do about patients. If health-care reform is to succeed, the final legislation must do something about this.
The Fujitsu report on health care consumers concludes, in part, that “less than 10% of Baby Boomers wanted to manage specific information into their health record”. That’s to be expected, for it’s symptomatic of the gross asymmetry of information that bedevils further steps to bring about rational reforms of health care. For instance, the basic items Gawande has been writing about for a decade, as in his book ‘Better’.
It’s no wonder consumers do not want to assemble their own records, because it’s just too difficult. Much of the health system is built around the complex pathways designed by insiders to get at useful information. Those data engineers, data miners and clerks are not going to give away their turf without resistance.
Take my recent excursion into the bowels of Medicare Australia. I wanted to know how my medical bills related to actual MBS billings.
The Medicare website lets users extract their previous 3, 6 or 12 months of data. However, if you want a specified time block you have to submit a signed declaration by snail mail, with separate forms for MBS and PBS data. My request, for 1/1/08 to 30/6/09, took 2 months to turn around. They sent back printed versions of five tables in landscape format.
Table #1 ‘Rendering provider location, name and address’
There are eight providers, but two of them the same person, differing only by variation in address – Blackburn South and South Blackburn. This indicates one evident weakness in design of Medicare’s databases. Surely, there is a national standard for address, freely available for download, but it looks like this database has accepted user-defined variations.
Table #2 ‘Ordering provider location, name and address’
There are three, the referees for specialist services.
Table #3 ‘Item number and description’
Table #4 ‘Bill type and description’
Three types – Cash, Bulk bill, Private This should have been an annotation to the next table.
Table #5 The main extract of billed items is presented in a table with 12 columns.
The entire extract could have been digested down to one page in portrait, with a few footnotes. Someone inside Medicare enquiries once said they had to work with five separate databases. If it takes two months to turn out a simple extract, they’ve got problems, and so have consumers who want timely, accurate and useful information on their own episodes of health care.
A final word from mangosteen farmer, Peter Saleras of Innisfail. He said, on ABC Radio’s Bush Telegraph, that Cyclone Larry had forced him to make changes, and now his tropical fruit farm is more productive than ever.
What will it take to kick the daylights out of our excuse for an integrated national health care system? Nothing short of a smallpox epidemic, I expect.”
• Trevor Kerr is a retired medical microbiologist, now working part-time for a community health service