2009-01-17 My Family Health Portrait

update

My Family Health Portrait

My Family Health Portrait is a product of the U.S. Department of Health and Human Services. The first version of My Family Health Portrait was introduced late in 2004.
My Family Health Portrait is not a genealogical tool, but a medical aid. It is an electronic form to help you create an overview of your family’s medical history to present to your doctor.

three products

The somewhat confusing thing is that the same name is used for three different products; a PDF form, a web application and a desktop application.
These three product are not released or updated at the same time. As far as I can tell, the desktop application has not even seen an update since 2004. The lower left corner of the download page for the Windows app says the page was last updated 2008 Nov 20, yet it still offers version 1.0 dated 2004 Nov 8 for download.

web-based

The web-based My Family Health Portrait has just been updated, and I decided to give it whirl by entering some fictive data.

non-compliance

It is disappointing to note that a U.S.A. government product does not respect international standards, but expects users to enter their height in feet and inches, with not even the possibility to use metric units.

The Surgeon General is not exactly setting a good example here. He certainly is not leading in compliance with either the Metric Conversion Act of 1975 or the U.S.A. president’s executive order 12770 of 1991, which specifically targets executive departments and federal agencies.

dangerous

Not only does the program demand the use of deprecated units for length instead of standard ones, it does not even show the units its expect you to use for your body mass (weight). There is nothing there to tell you whether you are expected to use kilograms, pounds or stones.
That is not just an oversight or a standardisation mistake, but medical malpractice; the unit-less value is practically sure to lead to misinterpretation of someone’s weight.
Misinterpretation of your health data is dangerous to your health.

I figured out that it expects American pounds by examining the program’s file format, but, to put it delicately, reverse-engineering expected units from the file format is not a common user activity.

sloppy

The entire program creates a rather sloppy impression. It wants a birth date, but does not provide either a date picker or a date format picture (something like YYYY-MM-DD). There is only a free-form text field, and when I entered the random date 23 Mar 1983, the program did not complain.

no help

Only when I tried to move to the next screen did the program refuse to do and did it put up a message stating Please enter a valid value for "Date of Birth". Incredible as it may sounds, that really is the entire message; it claims the date is wrong, but does not even hint at the format it expects.

I tried the International format (1983-03-23) and it took ten second to decide it does not accept that either. Again, just the message claiming the date is wrong, with no hint at the format it expects. There is a help button on that dialog box, but the text there is just a general description of the dialog box and no help at all.

antilogical

I tried 1983 Mar 23. I tried 23/03/1983. After several attempts I discovered that this program demands an antilogical date format; 03/23/1983.
Demanding an antilogical date format is bad practice. Not showing what format the program expects is sloppy. Not even providing any help is user-unfriendly.

Create Family Tree dialog

The program still features the rather intimidating Create Family Tree screen, that expects you to specify the number of brothers, sisters, aunts and uncles. They must have had four years of feedback from people complaining that they do know not it all, fearful to enter a wrong value, yet this dumb dialog is still in there. I wonder how many people stopped using the program at this screen, simply because it intimidated them.

My Family Health History Create Family Tree

By the way, the dialog in the Microsoft .NET program released more than four years ago is better. Its Create Family Tree dialog does not make you wonder whether you should include half-siblings or not, but makes a clear statement that you should.

half-siblings

As I continued using the new web program, I discovered that this new version does not support half-siblings as well as the older version. The Add Another Family Member buttons allowed adding full family members and your own half-siblings, but does not support half-siblings of your father or mother.

That is definitely a step backwards. You do not need a medical degree to understand that information on half-sibling can be very useful.

dumb dialog

When you get to this dumb dialog, the easiest way forward is to simply enter zero in all eight fields, as you can add people later. That’s right, this demanding dialog is not necessary at all. It is completely superfluous, yet continues to intimidate users.

Fill in the zeroes, hit the next button, and exercise about a quarter of minute (!) of patience, and you get to see a screen that looks like a form, where you can add details for your parents and grandparents and add additional family members.

saving

The form screen has a Save Family History button. When you click it, a dialog box pops up with instructions on saving. There are separate instructions for Firefox, Safari and Internet Explorer users. These separate instructions seem to be there because the save dialog box does not look the same in all three.
It is an extra, completely superfluous dialog box that only tells you what the real save dialog box will look like. That is just weird.

There is a big button on the home page of the My Family Health Portrait web site to open a saved file. When you open an existing file, the program returns you to form where you edit exiting family member and add new ones.

XML

When I saved the file I got my first positive impression of My Family Health Portrait; it saves its files in XML format. The press release claims the news program complies with various standards, so I expected to see an XML file that complied with strict standards. One look at the file was enough to disappoint me. The format that My Family Health Portrait uses seems rather ad-hoc. If it does indeed comply with standards, then those standards aren’t the epitome of elegance.

I soon noticed that the file is not even proper XML. In an XML file, dates should be in ISO format, but in the My Family Health Portrait file they are not.

standards

According to the press release, the new version is built on health information technology standards and EHR-ready, ready for use in Electronic Health Records. After even the briefest of trials, I already doubt that.

The press release does not mention the standards involved, it just posits the EHR-ready claim. The press materials I requested proved to be nothing but the press release, and the rather predictable questions I emailed within minutes of receiving it were not answered at all, but there are more sources of information.

A pop-up window on the My Family Health Portrait site states that developers of the tool have used existing standards including the HL7 Family History Model, LOINC, SNOMED-CT and HL7 Vocabulary.

These are not general software industry or genealogy standards. These are health industry standards. I have looked them up and provided links. The program’s data format is based on XML, which is a general software industry standards, and a somewhat human-readable format.

One reason for doubting the compliance and compatibility with these standards is that he XML that My Family Health Portrait produces does not reference any so-called schema for even one of those standards. In fact, it does not reference any schema at all. That strikes me as odd, because referencing an XML schema for a particular format is the way to let XML tools know how the data file is structured.

Another reason to doubt the claims about standards compliance is simply that international standards use international units, and this program does not.

GEDCOM

My Family Health Portrait does not support GEDCOM. Now, GEDCOM isn’t a health industry standard, it is a genealogy standard, and My Family Health Portrait is aimed at the general user, not the genealogist.
Still, the ability to import a GEDCOM would be useful. It is more than a nice-to-have; no one likes having to re-key data. The ability to import would ensure that all the relevant relatives are imported, and would avoid the creation of new data entry errors. Yet, more than four years after its introduction, My Family Health Portrait still does not support GEDCOM.

slow

The application is slow. Web application are seldom praised for their performance, but standards for the disease names and such aside, this program is just fairly simple digital form. I do not know why, but this web app is remarkably slow.

My Family Health Portrait does not seem to have any internal family tree model.

model

Working with the program, I got the impression that it is modelled as simple form to which you can add lines that carry labels such as "Brother" or "Aunt", but that those labels are just labels for human readers, without any meaning anything to the program itself.

My Family Health Portrait does not seem to have any internal family tree model. If it has one, it sure does not take advantage of it. The absence of such a model would explain the lack of consistency checks and GEDCOM import; to do those things, the program needs to understand relationships as more than just a label.

sloppiness

The one thing this program excels at is sloppiness. For example, when you opt to enter data on your father, a dialog box appears that shows the relationship as the father, but still lets you choose between a male and female gender, and when I opted for the female gender, the program did not protest at all.
When you encounter obvious issues like that, issues that even minimal testing would have uncovered, you can not help but doubt that the program follows any standard at all.

The program asks for race, but lets you specify that you are Asian, your brother is Hispanic or Latino, your mother is White, and your father is Filipino. There do not seem to be any consistency or reasonability checks at all.

The program did not object to me being born in 1983 with my brother born in 1604, my father being "40 feet" (12,192 m) tall, or my mother weighing just "1" (American pound, i.e. about 453 g).

serious matter

All this may sound funny, but it is a serious matter. A data entry program for health care is part of a mission-critical collection of applications and should be treated as such.

It is fairly easy to make a data entry mistake, and once that data gets copied into all kinds of systems, there is no telling what havoc it might wreck. Some systems expecting valid and consistent data might make erroneous decisions, or even crash, and in turn bring down other systems with it. That simply is not the kind of thing you want happening when you are in the hospital.
There should be many checks in all the systems, but that still does not excuse the absence of such checks in the date entry program.

irresponsible

The complete lack of consistency and reasonability checks, more than four years after the release of the first version, probably more than five after development started, strikes me as irresponsible.

conclusion

This is an official new release that has the benefit of more than four years of experience with previous versions, but it feels like a first untested proof of concept. This program seems to lack an appropriate design, appears untested, and even seems to ignore all the feedback they must have received for a solid four years already.

The new web version has the same major user interface mistakes as the program of four years ago. The dialogs are dangerously sloppy, the program is remarkable slow and there is no real help.

The new version is a major step backwards in that it does not support half-siblings as well as the older version did. The brief look I had at the definition of relationships in the HL7 Family History Model suggests to me that this particular program limitation may simply reflect the shortcomings of that model.

The basic issues I encountered, such as the lack of support for metric units, make it hard to believe that My Family Health Portrait follows international health standards.

EHR-ready?

The Surgeon General’s claim that this program is EHR-ready and my impression of the program’s overall quality are so at odds with other that I do wonder what the Surgeon General based that claim on. A claim as significant as this should be backed by a report of a successfully completed certification process, but the press release does not mention any certification.

Open Source

The press release notes that My Family Health Portrait is open source now and openly available for others to adopt. The open source project is know as Family Health History, but the source does not seem to be available yet. I alerted to the absence of the source by asking about it, but did not receive any answer and the project page still does not show any source.

ItRunsInMyFamily.com

Family Health History Tool

Late last year, SGgenomics announced ItRunsInMyFamily.com. The ItRunsInMyFamily.com web hosts their Family Health History Tool application. Yes, it is Yet Another Inconveniently Long Multi-Word Name. I sure wish these programs had catchier names.

Currently in version 1.0, the Family Health History Tool is an Adobe Flash application that makes good use of Flash’ graphical capabilities to provide a graphical family tree interface. Such graphical interfaces rarely work well for large genealogical databases, but diagramming tools like this are meant for small diagrams containing just your closest family members.

diagram symbols

The tool is fairly easy to use; it starts with just you and you can add family members by right-clicking and selecting an option from a menu. This tool uses a square for males, and a circle for females, but starts out by indicating you by a diamond - and that is the genogram symbol for a pet.

The Family Health History Tool does not follow genogram conventions, but the Standardised Human Pedigree Nomenclature. The diamond indicates that the gender is still unknown. It will change to a square or a circle as soon as you select the right gender in the dialog box.

problems

You can enter individual details by double-clicking and filling in the dialog box that appears. Sadly, the Family Health History Tool shares several basic errors with My Family Health Portrait; it uses non-metric units for length and does not indicate the unit it expects you to use for body mass.
It lets you enter dates by picking the year, month and day, but the dialog displays these three date components in antilogical order. Worse, it also lacks the consistency checks that it should perform and does not object when I enter 2009 as my mother’s birth year.

promising

The Family Health History Tool looks much better and is considerably more responsive than My Family Health Portrait. It is pretty useless right now, simply because the program it is still in beta and the file save function does not work yet. Still, the program does look promising.

conclusion

The My Family Health Portrait program is sick. The Family Health History Tool is not in top shape yet either, but it may provide the healthy competition that My Family Health Portrait needs.

updates

2011-04-23 broken link

The SGgenomics site is dead. The broken link has been removed.

2011-08-12 version 1.0 download gone

The My Family Health Portrait 1.0 for Windows download page is gone. The broken link has been removed.