Ongoing HEALTH: increasing access to healthcare for persons with disabilities
The HEALTH study aims to support Member States, Iceland and Norway with guidance on increasing access to healthcare for persons with disabilities, with a focus on cancer care.
Background
The right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability is a fundamental right enshrined in Article 25 of the UN Convention on the Rights of Persons with Disabilities.
However, it is far from being a reality for millions of persons with disabilities who tend to receive health care of lower quality that is not adapted to their needs.
Read more about EDF’s work on health policy.
Study News
The study team launched a survey on 8 July that aims to assess access to cancer screening, diagnosis, treatment and clinical trials for persons with disabilities. The survey is available in all official EU languages, Norwegian, Icelandic and in Easy-to-Read format. The survey takes approximately 10 – 20 minutes to complete and is open until 8 December, 2024. All answers are anonymous and data will only be analysed at the aggregate level.
Find the standard survey through this external link.
Find the Easy-to-Read survey through this external link.
Study in Brief
The study is included in the EU4Health 2022 work programme and aims to advance the rights of persons with disabilities through evidence-based policy making on health and human rights.
There are three dimensions to the study:
- Map and analyse the main bottlenecks in accessing healthcare for people with disabilities
- Provide guidelines on how to increase access and overcome barriers in access to healthcare (e.g., medical settings, digital health services and other relevant settings) for people with disabilities
- Analyse the situation of people with disabilities in terms of access to cancer screening, cancer diagnosis and care
Governance & EDF’s Role
The study is managed by ICF, and supported by the European Disability Forum (EDF), to ensure the research is done not only on and for, but with persons with disabilities.
EDF will lead the coordination of an active consultative body known as the Contact Group. The Contact Group, comprised of organisations of persons with disabilities, patient organisations, service providers and monitoring bodies, will support the various work streams of the study, providing feedback and guidance on the development of the study, deliverables, dissemination and more.
Health experts from EDF will also participate as stakeholder representatives in the Contact Group, with direct involvement in the development and approval of guidelines for overcoming barriers and increasing access to healthcare for persons with disabilities.
Technical analysis for the study will be performed by the London School of Hygiene & Tropical Medicine.
An internal advisory board, including experts from the World Health Organisation and the European Disability Expertise Network, will offer guidance for guideline development.
Timeline
The study kicked off in September 2023 and will run for 2 years.
Contact
For further information, please contact Markaya Henderson, EDF Project Officer markaya.henderson@edf-feph.org
If you would like to be more involved or informed about study updates, please inquire about joining EDF’s email expert group on health.
Contact
markayahenderson
Health Policy and Project Officer
Prior to EDF, Markaya worked as a Project and Patient Engagement Officer for the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA). There she specialised in patient involvement in EU and industry funded research projects and led internal capacity building activities for national member associations. Before moving abroad, she worked as a complimentary healthcare provider, offering trauma-informed bodywork through private practice for over 5 years. She has also volunteered with a variety of support organisations including food banks, youth character mentoring and mental health organisations.