An Open-Source Practical Manual for Home Hemodialysis
Over the last 3 years, a global panel, assembled under the leadership of two home HD luminaries - Mark Marshall (Auckland, New Zealand) and Chris Chan (Toronto, Canada) – has painstakingly put together a manual to guide the establishment, administration, and performance of a home HD service.
This A to Z ‘how to do it’ manual is, in my view, the most significant endeavor to have been undertaken in dialysis in several decades…and I do not think that is too big a call for me to make. Nothing about home haemodialysis has been omitted from this extraordinary text. Indeed, nothing quite like this has ever previously been attempted in the dialysis firmament.
While the coordination was funded by an unrestricted grant from Baxter, the 35 contributors: nephrologists, nurses, administrators, social workers, health economists, and patient representatives from 9 countries: Australia, Belgium, Canada, Denmark, India, Japan, New Zealand, the United Kingdom, and the United States, with additional input from experts from Finland, Ireland and Turkey, have now completed this mammoth and otherwise unpaid effort.
It is now available in two formats, both under the auspice and banner of the International Society for Hemodialysis:
As a free and ‘open to all’ Special Supplement of Hemodialysis International: “Special Issue: An Open-Source Practical Manual for Home Hemodialysis”
As free and ‘open to all’ website with an easy-to-negotiate home-page platform that provides open access to all papers as printed in the HDI supplement.
However, there is much yet to be done to make this global effort fully web-friendly. It is intended that work should continue to convert the current journal-style manuscripts into a more web-efficient format with the inclusion of an in-built search capability, hyperlinks to internal and external sources, and a greater use of pictorials +/or demonstration videos. The Global exercise stared out with one purpose - to create a web-based, interactive, hyperlinking, living, breathing, dot-pointed, picture/diagram/photo-assisted beast that would allow...indeed encourage participatory updating and responsiveness. A D-I-Y "dialy-pedia", if you like.
James Heaf, Tony Perkins and I signed on to that idea and set out to build just such a wiki-like piece. I think our first iteration of “Infrastructure, Water, and Machines” went a good way towards achieving that goal.
Despite early encouragement to do this, we got gazzumped in the end, though, and all the inbuilt quirky web tricks we put in were taken out to make a peer-review-acceptable manuscript for HDI.
It was agreed that as this ‘roadmap to home haemodialysis’ seemed so desperately needed and opportune—as governments and providers are now ever more encouraging the resourcing and building of home dialysis programs—that the manual should not be held back awaiting its web-format but should rather be published for use in its current form.
As the work to web-fit the manuscripts proceeds, it will be vital that you regularly return to the website. This will allow you to journey with us as the site grows and updates, and as it morphs out of a manuscript style and into a ‘wiki’ format.
While it has been primarily constructed with the dialysis professional in mind…the intent being to provide a pathway, or roadmap, for those who may be unfamiliar with home HD who wish to learn from experts in the field exactly how they might go about setting up a new program…there is also a great deal here for the inquisitive patient or his/her family members.
I commend you to this extraordinary document and trust you will find it, in its’ entirety, a body of work to serve down the years as the most definitive home haemodialysis resource ever assembled.
Once more … the website is to be found at: http://home-hemodialysis.com/