The Patient Voice in Atopic Eczema Guidelines: How Do We Make It Standard Practice?

Eczema Support Australia is proud to share that Managing Director, Melanie Funk, is a co-author and the corresponding author on a new open access article, “The Patient Voice in Atopic Eczema Guidelines: How Do We Make It Standard Practice?” This international project was initiated and coordinated by the International Alliance of Dermatology Patient Organizations (GlobalSkin), and brings together patient leaders and clinical experts from around the world to make the case for meaningful patient involvement in atopic eczema guidelines.

 The Patient Voice & why this matters

Atopic eczema is a chronic inflammatory skin condition that can affect almost every aspect of life, including sleep, work and study, family life, mental health, and participation in everyday activities. Despite this, most existing eczema guidelines still do not include the perspectives of the people and families who actually live with the condition.  

The new article highlights that when patients and caregivers are part of guideline development, they bring essential insights about what really matters in care – such as preventing flares, managing treatment burden, and addressing the psychological and social impact of eczema, rather than focusing solely on the appearance of the skin.  

A global collaboration led by patient organisations

This work was initiated by GlobalSkin and co-authored by: 

• Bernd Arents – Dutch Association for People with Atopic Dermatitis, Netherlands 

• Korey Capozza – Global Parents for Eczema Research, USA 

• Prof Ncoza C Dlova – Nelson R Mandela School of Medicine, University of KwaZulu-Natal, South Africa 

• Melanie Funk – Eczema Support Australia, Australia 

• Assoc Prof Mark JA Koh – KK Women’s & Children’s Hospital, Singapore 

• Rachel Ogola – Eczema Society of Kenya, Kenya  

The collaboration brings together perspectives from different regions, health systems and communities to explore how patient and caregiver voices can be embedded as standard practice in eczema guideline development and implementation. 

Highlights

1. Guidelines must reflect patient priorities.
   With a chronic condition affecting millions of people, it is vital that guidelines respond to lived experience and not only clinical trial outcomes. 

1. Atopic eczema has unique psychosocial and cultural dimensions.
   The impact on mental health, sleep, daily routines and family life means that diverse patient and caregiver perspectives are needed to fully understand what “good care” looks like. 

1. All stakeholders share responsibility.
   Patient organisations, clinicians, professional societies, policymakers and funders all have a role in making patient involvement the norm, not the exception, and in ensuring guidelines are culturally, racially, socially and geographically appropriate.  

Actions

The work outlines several practical actions to support sustainable patient involvement, including:  

• Clear recruitment processes that seek diversity in age, ethnicity, gender, geography and eczema experience 

• Providing training and mentorship for patient partners so that they can contribute confidently 

• Clear communication about expectations, time commitments and support available 

• Structuring meetings so that patient perspectives are explicitly invited and recorded 

• Joint dissemination plans between professional societies and patient organisations, including plain language summaries of guidelines 

These steps align closely with Eczema Support Australia’s advocacy for shared decision making, evidence-based care and equitable access to treatments and support. 

What this means for Eczema Support Australia’s work

Being part of this article allows Eczema Support Australia to: 

• Bring the Australian eczema community’s voice into international discussions about guidelines 

• Strengthen our advocacy for patient and caregiver involvement in local and national eczema initiatives 

• Support dermatologists, general practitioners and other health professionals who are seeking to follow best practice in involving patients in decisions about their care 

We will be using the findings from this work to inform our engagement with guideline developers, policymakers and professional bodies in Australia. 

Read the article

The article is open access and available here:

Related resources from Eczema Support Australia 

• Eczema Care Plan 

• Eczema Care Online Toolkit

If you are a clinician or policymaker interested in working with Eczema Support Australia on guideline or policy development, please contact melanie.funk@eczemasupport.org.au