Patient Leader Dialogue Report 2018 – Policy Drivers in Atopic Eczema

The International Alliance of Dermatological Patient Organisations (IADPO) also known as GlobalSkin hosted an event “Patient Leader Dialogue Workshop on Atopic Eczema”, in September of this year in Paris. The Irish Skin Foundation (ISF) was one of eight patient organisations from eight countries who took part in the event.

What was the goal of this meeting?
The goal of this workshop was to look at challenges and recommend policy drivers that could positively influence the prioritisation of atopic eczema among health-care decision makers e.g. government.

What were the main themes that emerged from discussions?

Theme 1: Atopic eczema is widely misunderstood
The perception amongst the public and decision makers is that atopic eczema is not a serious chronic skin disorder but rather “just a rash” or merely just a “childhood condition”, that will resolve in early childhood, unfortunately this is not the case as approximately 1 in 12 adults in Ireland have atopic eczema

Theme 2: Difficulties in accessing timely and appropriate care
Insufficient access to dermatological care is a global issue reported by patients, caregivers and patient leaders. From the countries represented a common theme of ongoing shortage of trained health care professionals (HCP) including GP’s, nurses and Dermatologists which further exacerbates difficultly in accessing care.

Theme 3: Difficulties in accessing treatments
Some regions reported, lack of access to medicines, while others indicated challenges related to reimbursement for new treatments. Participants indicated that there is a need for equal and fair access to treatments for atopic eczema patients across all regions.

What were the policy drivers that emerged in order to drive change amongst decision-makers?
Empowering patients, through information and tools to help them engage with HCP’s, provide support as they live with their disease, and acknowledgement they are not alone in their journey.
Quantifying impact through evidence. Data is a key input in the instruction of decision-makers, in any field as it makes a much more robust case. Research that will provide data should include health economics, prevalence, impact on patients and documentary evidence.

Position papers
The development of coordinated position papers built on patient organisation concerns can drive policy change. Topics which the group felt might impact patient access to care and treatment include expanding HCP training, increasing the number of specialists, establishing best practices and treatment guidelines and HCP coordination.

In conclusion, to bring about change in the policy environment that addresses the needs of those living with atopic eczema, and to dispel the common theme, “just a skin disease”. This indifferent mind-set needs to change and evolve to making atopic eczema a priority amongst health-care decision makers which the ISF fully support.

To read the report in full click here: Policy drivers in Atopic Eczema: Patient Leader Dialogue Report 2018

For more information about Atopic Dermatitis and Eczema, visit our Eczema page , or download our eczema booklet .If you need help or guidance about managing your eczema, contact the ISF Helpline or call (01) 486-6280.

To take part in our eczema survey click on “Living with Atopic Eczema & Eczema in Ireland