The Hemophilia Handbook: From Three-Ring Binder to Internet Resource
By Jeff Cornett, Director of Training, Research, and Advocacy
I inherited The Hemophilia Handbook. When I began working with Hemophilia of Georgia (HoG) in 1990, The Handbook was two years old and already very successful. My boss, Ruth Brown, was the author. She wrote the handbook while she was finishing her Master of Public Health degree at Emory University. One of her professors had been contacted by Karen Meredith at HoG. Karen saw the need for a comprehensive resource manual – a “handbook” – for families affected by hemophilia. She secured grant funding from the Georgia Health Foundation, hired Ruth as the writer, and assembled an Advisory Committee of people with hemophilia and their health care providers. A young art student, Wade Von Grawbadger, was hired to do the illustrations. (Wade has gone on to have an award-winning career as a comic book artist.) In 1988, the first edition of The Hemophilia Handbook was published. In a large three-ring binder with colored tabs for each chapter, it weighed almost five pounds.
The grant from the Georgia Health Foundation provided a free copy of The Handbook to every family in Georgia with hemophilia. The Georgia families told their relatives about this great new publication and soon HoG started getting requests for handbooks from all over the country, then from all over the world. Printing and shipping a five-pound book was expensive. HoG tried to keep the cost down so it would be affordable to consumers. We found creative ways to get copies overseas. In 1990, instead of shipping books, we granted reproduction rights to the Haemophilia Foundation of Australia so they could print and distribute handbooks to their families. We couldn’t get a handbook to everyone in the world who requested one and that was an on-going frustration.
By 1990, The Handbook was already in need of an update. In the beginning, we had the fantasy that we would send replacement pages to everyone who had ordered a handbook. We actually attempted this. When we reached 2,500 handbooks shipped to 35 states and 5 foreign countries, it was obvious that system was not going to work. I was assigned editing responsibilities for a new edition. The biggest complication was that HoG did not have a digital copy of the handbook. All edits (and the index!) had to be done by hand. The sections on hepatitis and AIDS were completely rewritten. We included information about a new hope for a cure – a procedure called “gene therapy” – and a new product called recombinant factor VIII. We added a woefully inadequate two pages on von Willebrand Disease. We were able to tell people about new protections under the Americans with Disabilities Act. We put in factor dosage tables that were soon photocopied and taped to the walls of most hemophilia treatment centers. We updated the immunization recommendations for children – the part of the handbook that was guaranteed to be out-of-date as soon as it came back from the printer.
It was six years before the third edition of The Hemophilia Handbook was printed. We used that time to make some major changes. We finally had a digital copy – the result of me re-typing all of the text and scanning the drawings. By switching from a three-ring binder to a spiral bound book, we were able to drop the weight to just over two pounds. Thanks to another grant from the Georgia Health Foundation, we were able to keep the price the same as the 1992 edition. New content was added, including immune tolerance, Creutzfeldt-Jakob Disease, and Internet resources. The biggest changes came from making the handbook easier to read. We followed the best practices of health communication and lowered the reading level and added many more graphics. I was very proud of the 1998 edition.
Even though having a digital copy of The Handbook made changes easier to make, we continued to struggle to keep the handbook comprehensive and up-to-date. The information was only current as of the publication date. We had to avoid information (like immunization tables) that was likely to change soon. We also committed to a big project: making the next edition of The Handbook available in both English and Spanish. We achieved this goal in 2002 with the publication of La Guía de Hemofilia. A bit of trivia: because Spanish generally requires more words than English to communicate the same idea, La Guía is 32 pages longer than the same edition in English.
After publishing the 2002 editions of The Hemophilia Handbook and La Guía de Hemofilia, we turned our attention to printing a resource just for people with von Willebrand Disease and inherited platelet disorders. I don’t think I realized how difficult this undertaking would be when we began. Compared to hemophilia, VWD and platelet disorders are very complicated. Just deciding which platelet disorders to include and which ones to leave out took much thought. My guilt over excluding Montreal Platelet Syndrome was relieved several years later when researchers decided it was a sub-mutation of type 2B von Willebrand Disease. In 2007, we published The VWD & Platelet Disorder Handbook. I decided that it would be our last printed handbook.
This decision was not difficult. When people needed medication information, they no longer went to their bookshelf. They went to the Internet. Making our handbooks an online resource solved so many problems. We could make changes to the text instantly. The Handbook could be comprehensive again. We could provide hyperlinks to other websites for further information. We could use color photographs instead of line drawings. The Handbook could be free to anyone, anywhere in the world who had access to the Internet. Our readers could give us instant feedback and ask questions. These features became real when the first respondent to the online handbook, a woman in Malaysia, asked for updates on the latest hemophilia treatments and more information for carriers.
We are excited about launching this new venture. All of us who have been involved with the handbooks over the years have found the work to be very rewarding. Parents of children with bleeding disorders have told us many times how important the handbooks are to them in learning to cope with all of the demands of a chronic condition. We want to continue to fill that need. Let us know how we can make The Handbook better. We promise you won’t have to wait years to see your suggestion make it to print!