DEPARTMENTS: Guest Editorial
As a medical student and young physician, one of the greatest teachers and role models I ever had was a nurse named Pat Kovalchick, LVN. Pat worked in the Department of Dermatology at the University of Texas Southwestern Medical Center for more than 20 years, and she knew all of our patients, the details of their diseases, the names of all their other doctors, and how each patient’s children were doing. She also knew how to navigate the university medical system to ensure that our patients could get every obscure laboratory test or compounded medication they might need and how to connect patients with patient advocacy organizations for their diseases. She was a phenomenal role model as a patient advocate, and she taught me how to connect my patients with resources and support.
Throughout my medical training and with my interest in patient advocacy, I have worked with many nurses who carry forward the tradition that Pat exemplified. I have found that nurses are natural patient advocates, and I find myself frequently telling my dermatologist colleagues that there is so much we can learn from nurses about patient advocacy, about how to educate patients by translating medical information into a language that they can understand, and about making sure that they are connected to support groups and advocacy organizations that can help navigate the burden of living with skin disease.
The Dermatology Nurses’ Association (DNA) is actively involved with many advocacy organizations through its close working relationship with the Coalition of Skin Diseases (CSD). The CSD is an alliance of patient advocacy organizations that is affiliated with the American Academy of Dermatology and the Society for Investigative Dermatology (SID), in addition to the DNA. These organizations provide useful services to patients, including connecting them with experts in their disease and clinical trials, assisting with access to care, and providing educational materials and resources. For example, for children with conditions that may be disfiguring or feared, these groups send representatives and/or materials to help educate teachers and school communities.
In 2011, I worked with my mentor, Dr. Paul Bergstresser, and the SID to develop and release an iPhone application (app) that makes referring patients to advocacy groups so easy that it can literally be done in a few seconds. The app is called “Skin Advocate,” and it is available as a free download from the Apple App Store. The Skin Advocate iPhone app contains contact information for all of the organizations in the CSD, allowing users (nurses, dermatologists, motivated and engaged patients, social workers, therapists, pain management specialists, etc.) to contact these organizations directly from the app. It also has a “share” button that can send the organization’s contact information to a patient via an anonymous “do-not-reply” email. Thus, nurses and other healthcare professionals can refer patients diagnosed with virtually any skin condition, from eczema to cutaneous lymphoma, to an advocacy organization while the patient is still in the examination room. The Skin Advocate iPhone app can be found and downloaded for free by typing in either “skin advocate” or “dermatology” in the iPhone app store.
In the relatively short time that the Skin Advocate app has been available, I have once again been impressed to see how nurses have been trailblazers in its use. The nurses in our academic medical center were among the first to find and use the app, and they have been teaching their physicians and colleagues how to use it. Moreover, DNA Executive Director Victoria Elliot spearheaded the DNA’s being the first national medical organization to officially endorse the Skin Advocate app. In fact, the app appeared on the DNA Web site months before any national physician organizations publicized it in that way.
So, to convey a message to the readers of the Journal of the Dermatology Nurses’ Association (JDNA) from dermatologists in the field who are involved with patient advocacy initiatives, we honor and appreciate our teammates in the nursing community for being such amazing advocates and for leading physicians in this way. We would also like to let you know that you have a friend and partner in the SID. Dr. Bergstresser, who has worked with the CSD on patient advocacy initiatives for several years, is the President of the SID, and he has made patient advocacy a goal of his presidency. In addition to sponsoring the Skin Advocate iPhone App, the SID has launched a patient portal on its Web site at http://skin-research.org. In carrying forward the torch of patient advocacy, I hope to share with JDNA readers that you have a community of friends behind you as well as a new high-tech tool.