NPAR

[amym1586]

Anyone ever used NPAR (National Patient Antibody Registry)?

[David Saikin]

I have not

[goodchild]

I've heard of it but haven't used it personally.

[amym1586]

UBS was telling us all about it.  I should have known it costs money!!

[goodchild]

Our state has a well-developed Health Information Exchange. Approved users are able to look up hospital encounters, lab tests, physician documentation, etc for patients who haven't declined the transfer of their PHI, for anything that takes place within the state since 2012ish. I don't know how many states have something like this in place.

[amym1586]

Well that's convenient!  We are in the deep South and if I am stumped I'll usually just call around to local hospitals to see if they've got a history on a tricky patient.  But that would be nice to have a set up like that.

[Auntie-D]

We have one in the UK that is government funded - bizarrely some hospitals have opted not to share their info.

 

It's a great idea!

 

We look up all new antibodies on it to see if they are known elsewhere. We recently found and anti-Fy(a) and when we looked on the register the patient also had an anti-D and anti-M that were no longer showing up. D, not a problem, but it meant that we were able to order M-negative blood to transfuse.

Edited September 24, 2015 by Auntie-D

[Malcolm Needs ☆]

Strictly speaking (although I know exactly from where you are coming Auntie-D), it is the hospital's Caldicott Guardians who cause this problem, rather than the hospitals themselves in other words, even the Chief Executive cannot overrule these Guardians -  which rather suggests that the "Guardians" have far too much power for people with so little knowledge!

 

For those members who are not familiar with the term "Caldicott Guardian", Lord Caldicott came out with some laws (well, he didn't, but the results of his inquiries became Law, passed by the then Government) about what can and cannot be kept secret as far as computer records are concerned, and some of these "Guardians" (who know B****R all about blood transfusion and the dangers of alloantibodies) have decided that their own hospital's patient alloantibodies should be kept secret from other hospitals (despite the fact that this secrecy might kill the patient).

 

IDIOTS!!!!!!!!!!!!!!!!!

 

       

[goodchild]

Strictly speaking (although I know exactly from where you are coming Auntie-D), it is the hospital's Caldicott Guardians who cause this problem, rather than the hospitals themselves in other words, even the Chief Executive cannot overrule these Guardians -  which rather suggests that the "Guardians" have far too much power for people with so little knowledge!

 

For those members who are not familiar with the term "Caldicott Guardian", Lord Caldicott came out with some laws (well, he didn't, but the results of his inquiries became Law, passed by the then Government) about what can and cannot be kept secret as far as computer records are concerned, and some of these "Guardians" (who know B****R all about blood transfusion and the dangers of alloantibodies) have decided that their own hospital's patient alloantibodies should be kept secret from other hospitals (despite the fact that this secrecy might kill the patient).

 

IDIOTS!!!!!!!!!!!!!!!!!

 

       

 

This may be an odd question, but is 'Lord' still in use as a title in the UK?

[Cliff]

I think this is a great idea and someone needs to start it, but I don't get how it works.

 

I'm in a big place, we type hundreds of specimens a day, most have a negative screen.  Those are the ones I should be worried about.  Should I check the registry for each one of those?  That would be a full-time job.  Then we also have an active reference lab, we'd need to report "lots" of new antibodies each day.

 

Maybe if there were an interface to my computer system, but that would need to work both ways.  When I log in a new specimen it would need to contact the database to see if there are any known problems, then if I have a new problem, that would need to be fed into the database.  This would require programming from each labs vendor.  Not something I see happening in the near future.

 

As I understand it now, it would be far too labor intensive for us.

[goodchild]

I think this is a great idea and someone needs to start it, but I don't get how it works.

 

I'm in a big place, we type hundreds of specimens a day, most have a negative screen.  Those are the ones I should be worried about.  Should I check the registry for each one of those?  That would be a full-time job.  Then we also have an active reference lab, we'd need to report "lots" of new antibodies each day.

 

Maybe if there were an interface to my computer system, but that would need to work both ways.  When I log in a new specimen it would need to contact the database to see if there are any known problems, then if I have a new problem, that would need to be fed into the database.  This would require programming from each labs vendor.  Not something I see happening in the near future.

 

As I understand it now, it would be far too labor intensive for us.

 

Definitely. Pretend that release of PHI was of no significance and that it was possible to have an instantaneous interface with an interconnected web of hospitals. Other significant barriers to overcome:

• Duplicate medical records. In the US something around 8-12% of every medical record number in the master patient index is a duplicate. I'll try to scrounge up a reference.
• Different HIS/LIS systems.
• Different nomenclature.
• Different blood bank policies/procedures.

Just to name a few off the top of my head.

 

We use our state's HIE only for patients with known antibody history, sickle cell patients, blood type discrepancies, unique situations, etc.

[Malcolm Needs ☆]

This may be an odd question, but is 'Lord' still in use as a title in the UK?

 

No, it's not an odd question, but the answer is yes.  Nowadays though, a peerage is only given to an individual, rather than in perpetuity to the peer's son/daughter (so that the peerage dies when the individual dies - so to speak), but, rarely, even now, a person will be invested with, say, an Earldom, which will be inherited by the individual's first born (it used to be their first born son, but now, I THINK, a daughter can inherit the title) - but granting such a peerage is now VERY rare indeed - it was never common, but now it is REALLY rare!  Mrs Margaret Thatcher was made a Baroness, and I have a feeling that this was a hereditary title (although I could be wrong about that

 

Mind you, I need not worry about ever becoming a Lord!!!!!!!!!!!!!!!!!!!!!!!

 

       

[Malcolm Needs ☆]

I think this is a great idea and someone needs to start it, but I don't get how it works.

 

I'm in a big place, we type hundreds of specimens a day, most have a negative screen.  Those are the ones I should be worried about.  Should I check the registry for each one of those?  That would be a full-time job.  Then we also have an active reference lab, we'd need to report "lots" of new antibodies each day.

 

Maybe if there were an interface to my computer system, but that would need to work both ways.  When I log in a new specimen it would need to contact the database to see if there are any known problems, then if I have a new problem, that would need to be fed into the database.  This would require programming from each labs vendor.  Not something I see happening in the near future.

 

As I understand it now, it would be far too labor intensive for us.

I see from where you are coming Cliff (I really do), but if you confine your searches to such patients as those who are regularly transfused (such as sickle cell patients, patients with a positive DAT), at least you will "capture" most of the "usual suspects" for making antibodies - although I do agree, not all (and I think, "all" is an impossible dream).  It's a start though!!!!!!!!!!

[pbaker]

The blood center that we use has an antibody registry.  Any hospital they service can enter patient antibodies found along with any other pertinent information regarding the workup.  When we receive an order in the BB, we always check our internal patient history and the blood center history.  It has been helpful many, many times.

[goodchild]

The blood center that we use has an antibody registry.  Any hospital they service can enter patient antibodies found along with any other pertinent information regarding the workup.  When we receive an order in the BB, we always check our internal patient history and the blood center history.  It has been helpful many, many times.

 

Thank you for sharing that.

[L106]

The blood center that we use has an antibody registry.  Any hospital they service can enter patient antibodies found along with any other pertinent information regarding the workup.  When we receive an order in the BB, we always check our internal patient history and the blood center history.  It has been helpful many, many times.

 

Now, that's a great place to start such a registry.  I really like that idea, but we would probably be interested in only checking patients with antibody problems.  In our geographical area, there are only two blood suppliers, so it would be fairly easy to check with both of them.

 

Donna

[pbaker]

We have found it helpful to find historic antibodies that are no longer detectable.  We honor them no matter who ID'd them, thus preventing a potential delayed transfusion reaction.

[Malcolm Needs ☆]

In the UK, we have just such a system, named SPice. The problem is that we have something called a Caulicott Guardian in each hospital or collections of hospitals, and these have the power to say whether or not other hospitals than their own can see their patients' results (including antibodies). They are, in my opinion, a complete pain in the rectum, as they have no idea just how useful (and life saving)this information can be - and have far too much power without the knowledge to use that power. Sadly, they are a legal guardian, and if we put such information as an antibody onto SPice, when they have not agreed to it, it would be illegal, and we WOULD be taken to court over it, so we dare not do so.

In the UK, however, only the Blood Services (really, the Red Cell Immunohaematology Departments, the Histocompatibility and Immunogenetics Departments and the International Blood Group Reference Laboratory) are able to put antibody specificities onto this system. This is quite deliberate as, some of our hospitals are great at identifying antibody specificities, but others are not - and it would not be a good idea to "name and shame" the latter! To give you an example, a sample I worked on the other night had a panagglutinating auto-antibody by enzyme-IAT, an auto-anti-e by IAT, an allo-anti-S by IAT and an allo-anti-K by IAT. The hospital thought that it only had an auto-anti-e and an allo-anti-Fya! If that had gone onto the system, and people had believed it, it could have killed the patient!

Edited October 29, 2015 by Malcolm Needs

[tricore]

Malcolm,
This is asking for legal trouble: "but if you confine your searches to such patients as those who are regularly transfused (such as sickle cell patients, patients with a positive DAT), at least you will "capture" most of the "usual suspects" for making antibodies".

 

If you do not search all patients and the one you didn't search has a severe reaction resulting in a lawsuit a good lawyer (barrister?) will jump right on it. Too much litigation in this world. I have seen lawsuits filed for less.

[Malcolm Needs ☆]

Excellent point tricore.

[tbostock]

A national registry would be a good idea and a good start.  I would be concerned though about the quality of the information entered.  Can any Blood Bank enter antibodies, or should it only be IRLs?  Bad information may be just as damaging as no information at all.