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Findings

Collaboration & exchange with Patient Groups

Collaboration & exchange with Patient Groups

What is the challenge?
  • Low public awareness and public investment in AD can negatively impact care received by AD patients(a)
  • Patient Groups can help support public campaigns and policies to improve treatment and care. Broadly, Patient Groups can work with key stakeholders (e.g. government institutions/expert panels) to represent, advocate and support patient-centric solutions(b)
Working collaboratively and exchanging information with Patient Groups on activities and initiatives aimed at improving AD management, care access and patient QoL
What is the goal/s of the intervention?
  • Improve the management of AD patients and QoL
  • Raise awareness of the burden of AD and recognition of it as a ‘real’ disease (i.e. because it has a dedicated Patient Group)
  • Advance understanding of AD disease and treatment
  • Improve access to care for AD patients
  • Ensure centre activities (e.g. research, education) understand and incorporate the patient voice/needs
Who is often involved in the intervention?
  • Patient Group
  • Dermatologist
  • Nurses/medical assistant
  • Comorbidity specialist (e.g. allergist)
  • Paediatrician
  • Primary care practitioner (PCP)
What are the potential outcomes?

Patients

  • Access to additional resources and support from the Patient Group (in addition to care provided by the centre)
  • Opportunity to build peer-to-peer networks and share experiences/learnings of living with AD
  • Increased awareness of the burden of AD amongst HCPs, general public, payers etc. through Patient Group and collaborative Patient Group-centre activities

HCPs

  • Effective ‘outsourcing’ of support to Patient Group and other patients, who have greater practical and personal knowledge of living day-to-day with AD
  • Improved engagement of patients leading to improved adherence to treatment plans
  • Ability to obtain direct input into the design and implementation of activities or materials from patients (e.g. for research and patient education)
  • Access to patients (via Patient Group referrals) who may not have otherwise accessed care (i.e. self-managing)

Patient Groups

  • Access to expert support from HCPs (e.g. for material development, grand applications)
  • Increase awareness of Patient Group/patient numbers and diversity, through centres raising awareness

Healthcare system

  • Potential cost-reduction through improved patient self-management and assess to care (via Patient Group signposting/recommendations)
(a)

International Alliance of Dermatology Patient Organizations. Atopic Dermatitis: A collective Global Voice for Improving Care[PDF] https://globalskin.org/images/Publications/ AtopicDermatitis.pdf Accessed 1 Oct 2019;

(b)

European Patients Forum, European Union. The Added Value of Patient Organisations 2017 [Website] https://webcache.googleusercontent.com/ search?q=cache:w6FWqw_zRngJ:https://www.eu-patient.eu/globalassets/ library/publications/epf_added_value_report-final.pdf+&cd=10& hl=en&ct=clnk&gl=uk Accessed 5 Nov 2019

What is offered as part of the intervention and how has it been implemented in different centres?

Note:    With input from the steering committee, we have categorised these activities by level of resource required to implement, however this may vary across centres/settings (e.g. depending on existing resources)

EASY
  • Centres directing patients to the patient advocacy groups (PAGs) for additional support and education
  • Patient Groups referring patients to local AD specialists (who they collaborate with) for diagnosis and management (i.e. signposting AD specialists)
MEDIUM
  • Co-creating a webpage of expert answers, incorporating patient FAQs and comprehensive expert responses
  • Co-developing therapeutic patient education materials for them to mutually distribute to patients
  • Co-creating a map of national AD specialists within country for Patient Group to share with patients who are unable to locate a specialist
  • Centre HCPs sitting on the advisory board of Patient Groups/providing strategic guidance
  • Co-running of AD support, education and focus groups for patients and their families
  • Patient Group representative sitting on the Scientific Board of national AD registry (that the centre is participating in)
  • Co-developing and delivering HCP AD training events
  • Co-organising local events with HCPs and Patient Groups to discuss the latest AD research and share Patient Group initiatives
ADVANCED
  • Collaboration on research conducted on lesser known areas of research relating to AD
  • Patient Group informing revision of national AD protocols and guidelines
  • Patient Group informing AD trial design hosted at centre
  • Co-development of patient smartphone application which educates patients on ointment application and provides step down regimes for steroiduse
  • Centre HCPs supporting formation (or forming) of Patient Group
  • Co-organising additional holistic wellbeing activities (e.g. yoga, hiking, make-up workshops)
Relevant centre case studies

Access and-development of resources for patient education

Collaboration with ANDeA, UNIMORE (Modena), Italy/UniCATT (Rome), Italy

Innovative smartphone application: “Zalf”, UMC Utrecht, Netherlands

Working with Asociación Civil de Dermatitis Atópica Argentina (ADAR), Hospital Italiano de Buenos Aires, Argentina

Working with the Brazilian Atopic Dermatitis Association (AADA), University of São Paulo Hospital, Brazil

Working with the Eczema Society of Canada, Women’s College Hospital (Toronto), Canada

Working with the patient advocacy group (aha! Swizz Allergy Centre), Inselspital (Bern), Switzerland

Involvement with wider AD community, Mount Sinai & Ichan School of Medicine (New York), USA

Collaboration on research

Working in combination with the PAG, CHRU Brest, France

Working with the Eczema Society of Canada, Women’s College Hospital (Toronto), Canada

Working with the VMCE, UMC Utrecht, Netherlands/UMC Groningen, Netherlands

Co-running of AD support, education and focus groups

National Eczema Day, CH Lyon-Sud, France

Working with the VMCE, UMC Utrecht, Netherlands/UMC Groningen, Netherlands

Working with the NEA, OHSU (Oregon), USA / Medical Dermatology Associates of Chicago, USA

Centre formation of Patient Group/Centre HCPs sitting on the advisory board

Setting up patient association, Linkou Chang Gung Memorial Hospital (Taipei), Taiwan

Working with the NEA, OHSU (Oregon), USA

Working with the VMCE, UMC Utrecht, Netherlands/UMC Groningen, Netherlands

Working with the PAG, CH Lyon-Sud, France

Co-delivery of HCP AD education (e.g. through symposiums)

Working with the patient advocacy group (aha! Swizz Allergy Centre), Inselspital (Bern), Switzerland

Working with the VMCE,UMC Utrecht, Netherlands/UMC Groningen, Netherlands

Co-revision of national AD protocols and guidelines

Working with the VMCE, UMC Utrecht, Netherlands/UMC Groningen, Netherlands

Establishment of AD specialist referral maps

Working with the AADA, Hospital Sant Pau (Barcelona), Spain/Hospital La Paz (Madrid), Spain