Remember that both Client Centered Care and the Digital Vault for the Electronic Medical Record are concepts under development. The author does not assume any responsibility for any consequence that results from use of this concept by others. Client centered care is all about taking responsibility by the individual, not only for his/her own health, but for his/her actions in general. It implies never accusing someone else, and never acting as a victim.
If you are not willing to accept full responsibility for use of the ideas and information laid down in this document, then do not use these and exit this document now and go perhaps here.
However, if you do decide to use these, you agree to take such full responsibility and not hold anyone else liable for the consequences of doing so.
The central idea in the
Open Telecare approach is, that people keep and manage the own
medical record at home. As needed, the owner of these data can share
this information with others, for instance informal carers, medical
specialist, the and family doctor. More details about the philosophy
of this approach can be found here.
This implies that the
person needs a computer system that is tailored for this specific
need. This system should be low-cost, low on energy consumption,
small sized, produce no noise, have sufficient memory storage and
interface capabilities, and run open source software.
This document describes
how to set up such a computer system for experimental purposes.
The basic idea is
simple: hack a commercially available network router by replacing the
original manufacturer's firmware by an Linux system that has all the
facilities that you need.
Besides showing you
where you can find the relevant information, I will also add my
personal experience with the particular hardware and software that I
have used.
This is the path that I
have gone, but there are probably many more ways of setting up a
Digital Vault.
I look forward to
learning other solutions.
A budget of roughly 100
Euros.
A PC running Linux
having access to the Internet, with ssh support installed.
Some courage and
perseverance
Some GNU/Linux
knowledge and experience
Some knowledge of
networking concepts
Those readers who would like to have a glimpse of the general idea before diving into the technical details can start with the articles by Adam Pash (2007), ByteEnable (2006) or Victor Loh (2006). You may be able to find other sources using Google search terms Linux, hack, router.
The
first step is to select hardware that is suited for installing an
appropriate version of Linux. There are various versions of Linux
that can be used. I have found OpenWRT
and DD-WRT.
In the documentation of
OpenWrt and DD-WRT you will find a great amount of detailed
information that you can use to select a router that you need.
There
are a number of network routers that can be used. I myself have some
experience using the Linksys
WRT54GL and the ASUS
WL500 Premium. In my first
experiments I played with the Linksys unit just to learn more about
Linux. Only then I realised what the possible implications of such a
Linux system could be when used for the Electronic Medical Record.
The I realised: I need far more storage capacity. The ASUS unit
provides two USB ports that can be used to connect a USB stick with
Gigabytes of memory. Later it proved to be very convenient to be able
to use a USB dongle for Bluetooth connectivity.
Installing
Linux on the router is easy. The documentation descibes very clearly
step-by-step the procedures that are needed to flash the new firmware
in the router.
Here and also
here are some places where
you can find instructions. I used the OpenWRT firmware, White Russian
0.9. I had no problems installing the firmware, and get the system up
and running. The whole procedure took a couple of minutes.
OpenWRT
supports many more devices than the ones I used, you can find a list
here.
The standard firmware gives you a basic Linux system that works smoothly. However, to serve as a vault for (medical) data you may need some extra facilities.
The ASUS machine has only 32 Megabyte of memory on board. To store greater amounts of information, this is not very much. I therefore equipped the system with a 2 Gigabyte USB stick, mounted on /mnt. The instructions that I used can be found here.
The Linksys and ASUS devices have no clock of their own. It is not very convenient having to set date and time manually each time the system boots. I therefore installed the ntpclient package, that periodically gets the time in the real world from an atomic clock over the internet.
Some medical data may be collected automatically from various sensors. Bluetooth links are convenient to avoid wires between the patient and the Digital Vault. To see how this would work in practice, I connected a NONIN 4100 pulse oximeter. This device may be employed in monitoring heart rate or blood oxigen saturation. The manufacturer has published the specifications for the Bluetooth communication here. To use this sensor, Bluetooth support is needed. I installed the bluez utilities as described by Marcus Brown (2007).
For reasons of privacy, secure data transmission is essential. Openvpn provides the option of creating access to data in the Digital Vault through an encrypted channel. More details about setting up openvpn under Openwrt are here.
The microcom package is needed as a tool in managing the Bluetooth communication that runs over the Serial Port Profile. Microcom can routinely be installed using the ipkg facilities of Openwrt.
The system is able to control the Nonin 4100 device and manage data collection over the Bluetooth Serial Port Profile using microcom. This was achieved using shell scripts, only a handful of lines of code.
It is pretty simple to
make data that you wish to share with others available using a web
page, that is password protected. The others can then view the
medical data using a web-browser. If you choose this option, you can
set the set up a http server by making the appropriate adjustments to
/etc/httpd.conf. It took me some time to discover that changes in
usernames and passwords are only effective after rebooting the
system...
Be aware that username,
password and data are not protected during transmission! One way of
avoiding problems here could be changing the password after each time
the system was accessed. Also, storing anonymous data only also helps
to protect your privacy.
If a secure connection is needed, it is possible to install an openvpn client on the computer that wishes to access the medical data. I have been able to the GUI OpenVPN client to examine data from Windows PC from a remote location.
These are the basic technical elements of an Digital Vault. I have no intention of being exhaustive, and no ambition whatsoever to provide an unambiguous manual of how the build the ultimate solution for the Electronic Medical Record. However, I do plan to use the system myself for my medical data. One of the first problems is to convince medical professionals that they should give a digital copy of these data to me...The future will tell how this will evolve.