BEYOND THE AWARDS, SKINPACT IS ABOUT MAKING A DIFFERENCE
An interview with the 2015 SkinPact Award winner in the Community Leadership category, Jury’s vote: Prof. Annegret Kuhn, MD, MBA
“The Skinpact Award is a great honour and gives my institute and I the opportunity to address the highly important issue of sunscreen protection in patients with lupus erythematosus in a European-wide setting. It helps also to address the challenge for the community in achieving a better insight into preventive and therapeutic strategies and implementation of sunscreen reimbursement by health insurance in Europe in the future.”
Prof Annegret Kuhn, MD, MBA
Interdisciplinary Center for Clinical Trials University Medical Center, Mainz, Germany, with European Society of Cutaneous Lupus Erythematosus (EUSCLE)
What motivated you to submit a project application to the SkinPact Awards?
In patients with lupus erythematosus, there is a high unmet need to conduct a European-wide survey to collect data on the type of sunscreens and their efficacy in the prevention of skin manifestations. This project has been discussed within my team for a long time; however, accessing funding for such a project was difficult. Recognizing that the SkinPact Awards Programme covers areas such as patient support, access to care and community education, we realized that our project would be perfectly suitable for this type of support. Therefore, we decided to apply for the SkinPact Award.
What is your project’s theme?
Prevention is the best treatment – The role of UV protection in patients with lupus erythematosus
After winning the Award and grant, how did you proceed with executing your project?
In cooperation with the self-help organisation LUPUS EUROPE, an umbrella association of 24 national lupus self-help organisations from 22 countries throughout Europe, we drafted, discussed and fine-tuned the ‘patient information’ and the ‘questionnaire’ on sunscreen protection in iterative rounds.
The questionnaire was then pre-tested by physicians and patients who were not involved in its development, by asking them to carefully read the survey and to report any misunderstanding or to notify us of any inappropriate questions. Thereafter, the English language documents were translated by bilingual native speakers into 19 European languages. Moreover, we set up a first online questionnaire via ‘Survey Monkey,’ which will be adapted for each translation.
What are the goals and measures of success for your project?
The aim of this project is to improve knowledge of prevention options and provide a basis for detailed recommendations for patients with photosensitive lupus erythematosus. The results will hopefully contribute to the reimbursement of sunscreens for patients with photosensitive diseases, such as lupus erythematosus, by health insurance. This project will be considered successful when at least 500 completed questionnaires from a minimum of 15 different European countries are received by our group after 12 months, the statistical analysis is performed and a manuscript is published in a peer-reviewed journal.
What stage is your project at today?
The translated documents are currently being validated by experts in lupus erythematosus and bilingual native speakers. The reviewed versions of the documents are incorporated into ‘Survey Monkey’. Moreover, we are developing a paper-based version of the documents for patients without a computer/mobile device and/or internet.
Who is working with you on your project?
The staff at my institute, the Interdisciplinary Study Center for Clinical Trials (IZKS) at the University Medical Center, Johannes Gutenberg University of Mainz (Germany) have worked together to develop the online-version of the questionnaire and will perform the data analysis. The project is organized and coordinated by Aysche Landmann, a long-term member of my research study group. Aysche Landmann has profound expertise in the organization of scientific projects (such as the development of the European Guidelines on Cutaneous Lupus Erythematosus), the coordination of Investigator Initiated Trials and is co-author of several manuscripts.
What would be the impact of your project? How do you think your project will make a difference in the real world setting?
First of all, the project itself will generate awareness of lupus erythematosus and, in particular, the need for sunscreen protection in patients with this photosensitive autoimmune disease. The results of this survey will lead to significant improvement in the knowledge of prevention possibilities and – as a next step – the possibility of developing data-based recommendations on the frequency of application and the type of sunscreen. The project and the resulting publication will hopefully contribute to the reimbursement of sunscreens for patients with photosensitive diseases, such as lupus erythematosus, by health insurance.
What would you say to professionals who wish to apply to the SkinPact Awards?
I can advise them to develop innovative, interdisciplinary and international projects, which focus on the needs of patients with skin disease and in which no or only limited data are available. The SkinPact Award is a great chance to receive support for your project and to attract attention to your topic in the community.
Finally, could you give some words of encouragement to inspire those who have ideas and initiatives?
Regardless of you career status, there is always an opportunity to realize new ideas and new concepts in dermatology. If you have an idea, you should define your aim, follow it closely, develop a proposal or procedure and look for the best international team and/or partner, who will support you.
A little bit more about Prof. Kuhn…
“On a typical working day…
My work predominantly includes the coordination and organization of clinical research, including meetings with my staff and colleagues from different clinical and research departments, to discuss and develop new projects from bench to bedside. Moreover, my work focuses on the definition of new diagnostic and therapeutic options for patients with lupus erythematosus and the setting up of new guidelines and targeted therapies…”