Tuesday, 1 April 2008

The full (summarised) medical history

To put my current health status into context I have reproduced below a summary of significant health events in my 58 years of life. This is important because I have "multiple co-morbidities" -or in other terms a lot going on.

I am reminded of the description in I Claudius of the reason for his relative longevity being that the various maladies that plagued his body could not agree among themselves which one would claim the credit for finishing him off!
The sad fact is that the 5 ( and counting) hip operations I have had were avoidable. They were iatrogenic - in other words caused by doctors!

In my 20's I was treated with episodes of steroid treatment for what was then diagnosed as Chrohn's / colitis with associated poly arthrithides. In other words I had a form of irritable bowel disease which also affected my joints. About 15 years ago I underwent an operation for the removal of the affected sections of bowel and have suffered far fewer symptoms ever since.
Despite concern with bowel function being replaced gradually with concerns about renal function the damage caused by the pulses of steroid treatment in my 20's has occupied much of both my time and that of the local health service in the last 20 years.
It seems to be accepted now that on and off treatment with steroids in young people can cause necrosis of blood supply to the head of femurs. The result is that the surface of the rounded end of the hip bone ( or femur) becomes knobbly because it is denied a normal supply of blood cells. This then rubs up roughly against the cup into which the rounded bit of the hip bone rotates and as a result movement becomes restricted and painful.
Having attributed my hip problems to a poor understanding of the side effects of steroid treatment in young people I am not in danger of descending into pitiful victim mode. I understand that the extent of medical knowledge at the time meant that different consultants really were acting in the best of faith and also realise that had I not been treated with steroids when the Crohn's disease first manifested, I would probably not have survived very long.
So here, for the record, is a summary of what I gathered together (as part of a PhD study thwarted by the post operative sepsis 3 1/2 years ago into the implications of lifelong electronic health records):
For what its worth as a patient with "multiple co-morbidities" I have no problem at all with confidentiality if it better helps overcome the otherwise disjointed nature of the health care I am likely to receive. In fact I sometimes suspect that when clinicians seek reassurances about patient confidentiality it is really their own actions that they are seeking to suppress from the possible judgement of their peers.


DJ Kirkby said...

For what it is worth, I feel that elctronic records are the way forward. My only concern is, what do we have as a back up if the computers are 'down'? I think patients should have an up to date, hand held copy of their own records.

Prisoner of Hope said...

Yes I agree with you ( apologies for the delay in responding btw). I started a PhD study into this a few years ago but had to stop when the post operative sepsis set in. I did manage to pull together about 50 years of my own clinical records. I used a Lotus Notes Database for this but also exported to text based files which came to under 10 mbytes - so could easily fit onto a 128 Mbyte memeory stick ( this was the technology around at the time). I experimented with fingerprint recognition, encryption etc to protect confidentiality. What I would like to see is patient controlled management of permissions and roles to access MY patient record. This could easily be a web site (synchronised with copies on memory sticks). I have obtained the last 4 years hospital notes & letters with a view to updating this work and will use a 4 Gbyte USB memory stick with Portable Apps and Open Office loaded so it will work on any Windows / Linux PC without leaving any long term trace.

I also want to encourage clinicians to feel comfortable sharing data and have a dream one day that they might even have virtual case conferences to better co-ordinate the treatment and care that I receive. I think that Groove (which ships now with the latest version of Microsoft Office Professional and was the software of choice of the USA Dept of Homeland Security for remote workers keeping in touch in a secure manner) offers a viable solution for patient centred lifelong electronic records.

In other postings a I do reflect on why professionals are reluctant to let others see notes they have taken (they are uncomfortable with peer review - which is only natural).This is as important an area for study as the information technology of course if we are ever to see patient electronic recoprds widely used.

If you want to see / hear a demo of what I came up with 4 years ago (hence a little dated) this is a link to a 12 minute flash demo that might be of interest: