[NB: This article was written by Susan Topol, and is being shared via Creative Commons Attribution 3.0 license.]
ICD Connection: Living with an Implantable Cardioverter Defibrillator is a collection of stories that describe what it’s like to live with an ICD—a device that is implanted under the skin to treat life-threatening heart rhythms that can lead to sudden cardiac arrest. The ICD Connection book contains chapters written by ICD patients, family members, and caregivers, and provides perspectives from various ages and backgrounds.
Living with an ICD
The inspiration for this book came from the Young ICD Connection Conference, hosted by the Samuel and Jean Frankel Cardiovascular Center (CVC) in the University of Michigan Health System. Young ICD recipients and their families come from all around the US to gather in person at this annual event. At each of these annual conferences, ICD recipients share their personal stories during a panel discussion. Feedback from these sessions has been overwhelmingly positive. Through hearing the stories of other ICD recipients, attendees have found encouragement and hope and the realization that they are not alone in their concerns, worries, or fears.
Patients Supporting Each Other
Helen McFarland, RN, works in the Device Clinic at the CVC, where she and her colleagues provide care and support for patients with pacemakers and ICDs. McFarland thought, why not share these patient stories in a book? She explains, “There are numerous books and articles available from a medical standpoint about ICD implantation, but they don’t help the patients understand the impact the ICD will have on their lives.” It is common for ICD patients to feel depressed or have anxiety, they can feel alone and isolated. McFarland adds, “They need to find their ‘new normal.’”
McFarland wanted to present a diverse collection of stories from people of different cultures, backgrounds, ages, genders, and with a variety of diagnoses so the book would provide something everyone could identify with. After doing a bit of research, she confirmed that nothing like this existed already so McFarland decided to pursue her own publishing venture.
Tackling the Publishing Process
McFarland tried moving the project forward on her own for about two years, and finally realized she needed some help. Assistance came in the form of Jasna Markovac, Senior Advisor for Publishing in the Medical School. Markovac, who works in the Office of Enabling Technologies within Medical School Information Services (MSIS), provides consultation services to faculty, staff, and students on all aspects of the publishing process, including exploring new publication opportunities such as self-publishing. Markovac also has close ties with U-M Library and has held numerous positions in the publishing world.
Once McFarland and Markovac began their collaboration, the project came together quickly. Markovac introduced McFarland to Terri Geitgey, Manager for Library Print Services at Michigan Publishing, which is part of a larger array of publishing services offered by U-M Library. Michigan Publishing served as the official publisher of the book, which included assigning one of its ISBNs, managing the process of getting print copies made for local distribution, and making the work available for sale through print on demand. Geitgey recommended using CreateSpace, the self-publishing arm of Amazon. U-M Library has a U-M contract with CreateSpace, saving McFarland the trouble of setting up an account and figuring out the process on her own.
Markovac formatted the book, while Geitgey provided trouble-shooting guidance and helped navigate the CreateSpace process. When the final editing and formatting were complete, Geitgey set up the title with CreateSpace and released the book to Amazon.
A Successful Cross-Campus Collaboration
This unique publishing endeavor proved to be a great example of a successful cross-campus collaboration involving UMHS, the Medical School, and U-M Library, all contributing the best in knowledge and expertise from their areas. McFarland brought her clinical skills and experience with patients to the project, while Markovac provided publishing guidance. McFarland adds, “I felt like I was trying to move a mountain until I met Jasna. She knew how to make things happen.”
Geitgey commented, “This was such a rewarding project to be involved with; both for the touching and inspiring content and the collaborative aspect of the process. It was a great opportunity to work with the UM Health System and Medical School for the first time, and I’m happy that U-M Library was able to use its publishing services and expertise to help make the book a reality.”
A Mixed Model for Publishing
The project also demonstrated how open and traditional publishing could coincide as a mixed model. Markovac, who also works closely with Open.Michigan, a U-M initiative that encourages and supports the open sharing of educational resources and research, suggested using a Creative Commons license for the book. McFarland was glad to support the open sharing philosophy and explains, “I wanted my book to have the broadest impact and reach the largest audience possible, using the open license facilitates this.”
Now Available on Amazon and Open.Michigan
Because it is openly licensed, the complete ICD Connection book, as well as individual chapters, may be downloaded by anyone from the Open.Michigan collection and freely shared with others. It is also available for purchase on Amazon, and an ebook version for the Kindle will be released soon. Since it was made available on Open.Michigan, the complete book was downloaded over 150 times; in addition, individual chapters have been downloaded over 70 times. Fifty copies of the book have been sold on Amazon.
Moving on to the next Project
The response to the book has been overwhelmingly positive, both from patients and from other healthcare professionals. McFarland now has two more projects in the works, providing the opportunity for further collaboration between Michigan Publishing, the Medical School, and UMHS. Her next books will focus on life for patients with ICDs from a men and women’s point of view. McFarland already has patients lined up who have agreed to share their stories.
Helping Patients See there is a Future
For McFarland, working on this book was her second job, and a labor of love. She concludes, “We can only host four support groups a year, and people don’t always want to be in a support group. ICD Connection is a great tool for patients, they can read in private and benefit from that form of support. They are scared, they don’t know what to expect, the book gives them context and puts things in perspective. They know they have a life they can look forward too.”