Wednesday, January 12, 2011

Medical Records

The cornerstone of Brian Deer's latest piece on Wakefield is the differences between medical records and the text of the Wakefield study.  He goes to great lengths to point out that that some portions of the children's medical records don't agree with what was published in the study.

As someone who has taken their children to many medical specialists all I can say is that I am not surprised in the least.  Children who have seen many specialists have many different sets of medical records and it is not at all unusual for them to disagree.

Those of you who have been through the process will understand what I am talking about, but for those of you who haven't been, I will explain.

In their short lives, my twin daughters have been seen by many medical professionals.  The following list, which is in rough chronological order, hits just the highlights -
  • A pediatrician
  • The local early intervention program
  • An audiologist
  • A psychologist
  • Another audiologist
  • A pediatric ENT doctor
  • A specialist in the speech and language department in a local hospital
  • A neurologist
  • A developmental pediatrician
  • A speech therapist
  • Another psychologist
  • A geneticist
  • The special education department of the local school district
  • A psychiatrist
  • And finally researchers involved in a study
Each and every one of these professionals took their own complete medical history of the twins and each and every one added their own thoughts and opinions to the record.  None of these people had access to the records of the others.

That means that my twins have at least 15 different sets of medical records spread out across a number of institutions.  I don't have direct access to any of these records so I have no idea what is in them.  If there are inaccuracies or omissions in any of them I would have no way of knowing or correcting them.

So, what do you suppose the chances are that all of these sets of records agree with each other on even the basic facts?  How likely is it that they contradict each other?

My twins could very well be out of the ordinary with how many people they have seen but you are going to have the same problem with even five sets of records.  You have to consider all of the information from all of the records and not cherry pick little snippets from here or there to get the complete picture.


  1. Fair and interesting point. You're quite right - I've often received summaries from professionals (OT, PT, ST, etc) which don't match what's really going on, but can't be bothered correcting every tiny detail in their reports, especially if we no longer see them.

    However, if there is any cherry-picking going on here, it is Wakefield cherry-picking the data he wanted. More specifically, there was no data - not just inconsistent or some data - to back up many of the claims he made about the patients. That seems a good few miles away from conflicting or slightly differing data, no..?

  2. Wait a moment, where are you getting the no data bit?

    Wakefield and the team at the Royal Free looked at the children and came up with different observations from the GPs.

    You jump to the wild conclusion that the GPs (who were puzzled and stuck, unable to either diagnose or treat these kids) were right and the Royal Free team, who did come up with a diagnosis and were able to treat the children were wrong.

    There is something ass backwards about that reasoning.

  3. The fact that the Royal Free doctors were able to help the children comes from the parents, who continue to express their appreciation of the help they received.

    Brian Deer said this about the parents: "The festering nastiness, the creepy repetitiveness, the weasly, deceitful, obsessiveness, all signal pathology to me," (from a blog comment )

    Yes, Brian Deer really cares about the well-being of these children.

  4. Minority, here's just one of the data issues that lead me to say there was no data for some of Wakefield's claims:

    "But only one—child 2—clearly had regressive autism. Three of nine so described clearly did not. None of these three even had autism diagnoses, either at admission or on discharge from the Royal Free."

    Which is to say, there was no data to establish the regressive autism, not just a conflict, as you suggest.

    Furthermore, Wakefield was not a developmental pediatrician, so any independent observations he may have made needed backing, and I quote:

    "But Wakefield was not a paediatrician. He was a former trainee gastrointestinal surgeon with a non-clinical medical school contract."

  5. I wasn't really addressing Wakefield.

    As I see it, there are (at least) two issues here. The first is what Wakefield did or did not do. The second is reaction to Wakefield.

    The first I don't have much of an opinion on - Wakefield clearly made some mistakes but I am not at all convinced that he purposely and maliciously committed some massive fraud for his own gain.

    I do think that he found the GI abnormalities that he included in his study. Now whether the whole measles thing was just him vastly overreaching his available evidence OR some ploy for his own profit, I don't know.

    As a side note, did you know that another study confirmed that the O'Leary PCR tests could have shown the presence of measles RNA? The study did go on to show that the test was a false positive (at least in their sample) but it does show that Wakefield could have seen the results he claimed - even if those test results were in fact wrong.

    So does that mean that Wakefield was simply overzealous or a fraud?

    As for the second part of the problem, I do have an opinion. There has been, at least in my opinion, a clear overreaction from many parties but especially Brian Deer.

    I strongly suspect that Deer has spent the last ten years or so following Wakefield to further his own career rather than for some more altruistic reason.

    For example, consider comments that were made by Deer on an autism blog were he basically blamed a child's autism on their parent's bad thinking -

    That sort of comment is not easily overlooked.

    But none of these arguments address the core question - can vaccines cause autism. I think the answer to that question depends on how exactly you ask it and what you mean by "cause" and "autism".

    But that is a matter for another time.

  6. What's curious to me about the latest (last year's, the year before that, etc.) allegations is that Wakefield was going to try to market his TF as a rival vaccine. But that isn't what the patent says. Yes, it says it can be used as a vaccine, but it says on the very first page that this was mainly for use as an alternative vaccine in immunocompromised individuals, those who could not have the standard MMR for whatever reason, and also as a treatment for IBD. There was no way it could be a rival vaccine to standard measles vaccines. Wakefield mentioned this to Deer and to the GMC. On Deer's website, you can read the patent and see for yourself. Funny how Deer only highlights and cherry-picks the portions of the patent that backs him up.

    What is also funny to me is that the RID (Ridicule/Ignore/Deny) movement is also completely ignoring that little tidbit of information.

    I really was almost sold until I saw that little tidbit.

  7. You would certainly have expected Wakefield to have read the hospital medical records for the kids. Especially a discharge SUMMARY.

    But somehow or another there was a change from the discharge summary (and other records) showing problems a month before vaccination to the first problems happening after vaccination.

    I can't think of an innocent explanation except unbelieveable incompetence.

  8. Sheldon,

    As I said before, I wasn't really talking about what Wakefield did or didn't do. My point here was that a child can easily have many medical records AND they won't always agree even in the basics.

    For example, I was given a report by the first psychologist that saw my twins and it was completely wrong. They didn't even get the simple historical information right - like basic milestones. The report said things like "child has never used a word" when we told them quite clearly that they had. Or it said that they walked at 9 months when in fact they didn't walk until 14 months.

    I actually had to write a two page correction to the report and pass it along whenever we gave the report to another group (to access some services for autism in my area you have to have to supply a report from a psychologist or the like).

    But then again, this person used the MCHAT as a diagnostic test much the same way that CARS, ADRI-R, or ADOS would be used. I didn't learn until a few years later than the MCHAT is not meant to be used like this (and I still don't know if its validity has been established for 18 month old twins, but that is another matter for another time).

    The kicker is that this person works for the developmental unit of a world-renown children's hospital and this unit specializes in developmental disorders like autism..

    There was also an MD who worked alongside this psychologist and who spent some time talking to us as well. Now, should I assume that this MD was trying to commit fraud because the summary produced from the group didn't match what we had told them or what was presumably in their records? Or is the more likely answer that they didn't read the report or, if they did, didn't take the time to go back and meticulously cross check it against their records.

    Since I know this group probably sees a couple of hundred children in a month, I would tend to believe it was either that they didn't read it, didn't cross check it against the record, or just made a mistake. Now take it one step further, I know other parents in my area have had the same problems with this group and had the same experiences.

    If I follow Deer's logic then I have to assume that this entire group is trying to commit a fraud when in fact I think the real problem is that they are extremely busy and just sloppy.

  9. In fact what you are saying was clearly stated in some of the BMJ rapid responses - which pretty much blew Brian Deer's arguments apart.

    Unfortunately these were quickly taken down by the magazine. Basically doctors in the system were saying that such discrepancies were common (along with scientific deconstructions of every single point.)

    the really scary thing is - a simple pilot study that suggests more research into a vaccine that was taken off the market in less than a year should make so many waves. (the current MMR in Britain is different (and safer) than the version at the time)

  10. I cannot see any proof of collusion between the eminent researchers that were tasked with this paper. Brian Deer would have us believe that a person as eminent as John Walker-Smith has less of a hold on what colitis is and was found in these children's bowels.

    The idea that Deer is at a better position to judge what the pathology showed is ludicrous to the extreme.

    The logic that John Walker-Smith was either culpable or was unable to recognise his own data is equally ludicrous.

    It is as simple as that...

    remembering Walker-Smith was a researcher with over 300 papers to his name plus a lifetime achievemnet award from Europe's peek Gastroenterology organisation.