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The Internet has come to dialysis in Seattle, Wash., thanks to an
initiative launched by Northwest Kidney Centers (NKC). NKC is a not-for-profit dialysis
provider, operating nine units serving about 1,000 patients in the Seattle metropolitan
area. Making the Internet accessible to patients is being funded by a donation from a
patient’s family. The donation and the launch of the initiative were the
culmination of a yearlong effort. In December 1997, I approached NKC Planning
Administrator Palmer Pollock about making the Internet available at the unit being built
in my neighborhood, West Seattle. When I first began using the Internet, it was apparent
after the first week that this new tool would change the way I understood and coped with
ESRD. If the Internet was good for me it would be good for other patients. Plus, the
Internet has the potential to address other issues that patients face.
Palmer became the Internet initiative’s early champion in NKC’s
administration; as the first step, separate electrical and conduit paths to each chair
were included in the new unit’s construction. Now the job was figuring out how that
conduit could get used.
By July, the initiative had found a sponsor from within NKC community. A patient’s
family agreed that this was an idea with promise and donated funds to improve overall
patient amenities, providing that Internet access would be the first step. We would start
small and if patients responded positively, there would be funds available to increase the
number of available laptops. |
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At this point some actual computer expertise was needed; once again it
came from the NKC community. Mike Curtis, NKC’s Information Service wizard, knew that
an information network already connected NKC’s nine facilities, so data could be
shared. This network, in turn, was connected to the Internet through a T1 line (a digital
link capable of transmitting much more data then a regular phone line). This is how
doctors are able to get a patient’s latest lab results from their offices. With all
of this in place, getting patients online would only be a matter of wiring each station to
the network and buying laptop computers and tray tables for the laptops. Simple. Now we
knew it could be done technically but now we had the job of justifying the project:
explaining the initiative’s value and potential. |
Why the Internet?
 Education
Support
Advocacy
Entertainment
An Extension of a Job, Classroom and Friends
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"The NKC mission is to promote independence and enhance
the quality of life of individuals with kidney failure," said Joyce Jackson,
President and CEO of NKC, when asked about the initiative. "In 2002 our organization
will celebrate its 40th anniversary of providing outpatient dialysis in the Seattle area.
It is our goal on this anniversary to be acclaimed as the nation’s premier dialysis
program. As a nonprofit (organization) we can only succeed at this goal if we partner with
the community and empower our patients. That’s what this initiative is all
about." From a patient’s perspective, I see a number of powerful uses of the
Internet for the ESRD patient (see list on left side).
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Our Next Steps
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Now the job is getting patients assigned a name to log on with, showing
them the specifics of the system, and making the system easy to use. Most ease-of-use
issues are software related; it will be an ongoing process to identify problems and find
solutions. Patients should be in charge of maintaining the system. They will need to know
where the equipment is stored, how to set it up and take it down, etc. Some NKC
patients, those not currently using the Internet, will use a free web based email service
allowing them to easily retrieve email from public libraries, a friend’s house, or
anywhere there is Internet access. Email accounts are available for free at juno.com,
hotmail.com, and other web sites. Other patients, such as myself, can configure the
browser to my preferences and can read in-center mail sent to my home Internet provider.
Organizing, promoting, and maintaining the system is now the job for 1999. Making the
system easy to use will be an ongoing challenge. Introducing novices to the world of
computers will take time and effort. Keeping the hardware running will require the
cooperation of all the users. At the same time it will be important to track the progress
and document successes and failures of the project.
I’m an optimist. I hope that in 2002 the Internet will be available at all 182 of
NKC’s dialysis stations, having proved its worth at the West Seattle unit. I hope a
majority of NKC patients will have embraced the Internet as a tool in understanding and
coping with ESRD. Finally, I hope as the NKC begins its next 40 years it will have the
most informed and involved ESRD patient population in the world. …NN&I
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| About The Author |
Mr. Peckham is the president of the Northwest Kidney
Patient’s Association and serves on the Board of Directors of NKC. |
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| Education |
Many patients have already accessed the Internet at home or work for
information on ESRD. There are authoritative websites dedicated to every aspect of
dialysis, from diet to travel. You can calculate your Kt/V, check the phosphorous content
of frozen yogurt, or read the latest studies on EPO. Manufacturers, providers, and
professional organizations sponsor other sites.
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| Support |
Patient experiences are a tremendous resource to anyone with ESRD; NKC has
long organized support groups. These support groups are underutilized because of the
additional time they require. The Internet provides an opportunity for patients to connect
with each other without giving over more time to a condition that already demands 12 to 20
hours a week. Using chat groups, website bulletin boards, and email, support will now be
available during treatment.
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| Advocacy |
Patients need to be made aware of the issues that will affect their care
and they need to participate in the decision-making process. Unfortunately, today patients
are generally uninvolved in promoting their own interest. If patients can create a
community through the use of the Internet, then they can be more informed and participate
more fully in the process that affects them.
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| Entertainment |
The Internet opens a world of entertainment opportunities during
treatments. You can listen to music, shop, or follow the stock market. Following links
through the cyber universe can be a great way to pass time while dialyzing. There are
numerous games available on the Internet. It is possible to link patients together for a
game of hearts or chess and games that can only be played on a computer.
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| An Extension of the Job,
Classroom, Friendships |
By providing access to computers, patients will be able to catch up with
work, school, or an old friend. The hours spent on dialysis will no longer need to be
separate from the rest of a patient’s life. A patient who owns a laptop computer will
be able to bring it to the center and use it. For patients without access to the Internet
at home or work, in-center access will provide an opportunity to tap into information that
is otherwise unavailable. In the age of telecommuting it may become common for a patient
to work while dialyzing in-center. |