GLOBAL PATIENT-LED EFFORT TO MEASURE AND IMPROVE ECZEMA CARE LAUNCHED
First of its Kind Collaboration Uses Data-Driven Approach to Evaluate and Compare Health Systems in 8 Countries
Santa Barbara, CA, September 13, 2021 – Eleven patient organizations from eight countries have joined together to launch the Global Patient Initiative to Improve Eczema Care (GPIIEC) on World Eczema Day. The initiative is a global collaboration to establish a common “yardstick” to assess the responsiveness of health systems to the needs of patients and their caregivers.
This first of its kind partnership has identified the elements of health care provision that matter most to patients and caregivers and established indicators with which to measure them across eight developed nations (Australia, Canada, Denmark, France, Italy, Germany, United States, and the United Kingdom).
The GPIIEC will collect and analyze data from primary surveys and secondary data across the eight countries to create a comparative global dashboard of eczema care. The joint effort will lead to data-driven insights about each country’s areas of strength and weakness in meeting the needs of people who live with eczema — and result in policy recommendations for addressing them.
“We are thrilled to join forces to define what better care looks like for the people we serve,” said Rachael Manion, Executive Director of the Canadian Skin Patient Alliance. “Working together, we’ve learned that issues we face are similar across countries and continents. It’s time to advocate for change, and defining that change is a critical first step.”
A literature review conducted in 2020 by the lead organization for the Initiative, Global Parents for Eczema Research (GPER), found that across the eight countries, studies show that eczema patients and caregivers encounter similar challenges: limited treatment options, obstacles to accessing specialists and treatments, and approaches to eczema care and management that ignore the full impact of the condition, particularly the significant psychosocial burden.
GPIIEC is guided by 11 patient organization representatives:
- Stephanie Merhand / Marjolaine Hering, Association Française de l’Eczéma, France
- Thomas Schwennesen, Deutscher Neurodermitis Bund (DNB) German Atopic Eczema Association, Germany
- Anne Vastrup, Atopisk Eksem Forening, Denmark
- Mario Picozza / Lorena Marchetti, Associazione Nazionale Dermatite Atopica, Italy
- Rachael Manion, Canadian Skin Patient Alliance, Canada
- Cheryl Talent, Eczema Association of Australasia, Australia
- Andrew Proctor, National Eczema Society, United Kingdom
- Wendy Smith Begolka, National Eczema Association, USA
- Kathy Tullos, International Topical Steroid Awareness Network, USA
- Melanie Funk, Eczema Support Australia, Australia
- Korey Capozza, Global Parents for Eczema Research
Eczema is a chronic relapsing inflammatory skin condition that is increasing in prevalence in many countries worldwide. It impacts approximately 15% to 20% of children and 1% to 3% of adults globally resulting in a significant patient burden and high demand on health care systems.
The global initiative is supported with funding from LEO Pharma, a leader in medical dermatology dedicated to changing the standards of care for people with skin diseases. LEO Pharma is headquartered in Denmark with a global team of 6,000 people, serving 93 million patients in 130 countries. For more information: www.LEO-Pharma.com.
The Global Patient Initiative to Improve Eczema Care (GPIIEC) is a patient organization-led effort to measure the performance of health systems in meeting the needs of people with eczema (atopic dermatitis) and their caregivers using a common methodology to allow for direct comparisons. For more information: www.improveeczemacare.com
Global Parents for Eczema Research (GPER) is a grassroots, non-profit organization based in California whose mission is to improve quality of life and reduce suffering for children with moderate to severe eczema and their families. For more information: www.parentsforeczemaresearch.com
Korey Capozza, MPH
Executive Director, Global Parents for Eczema Research