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eurordis.orgeurordis.org
INNOVCare/Rare Barometer survey on
daily needs of people living with a rare
disease and their families
Sandra Courbier
106/06/2016
eurordis.orgeurordis.org
Impact of rare diseases on daily life, social care
burden measurement
3000 patients (adults) and family members;
Identification & dimension of needs;
Study of care pathways in MS
Selected countries: Austria, France, Hungary,
Luxembourg, Romania, Spain, Sweden, UK
Listing services, mapping care pathway and
collecting good practices
06/06/2016 2
WP4 State of the Art – Provision of
social care to RD patients
Council of European Federations 2015
Time frame: Oct 2015-Nov 2016
Study on patients/families’ needs
Comparative analysis (Oct-Nov 2016): identify gaps between
patients’/families’ needs and the current care pathways
eurordis.orgeurordis.org06/06/2016 3Council of European Federations 2015
• Benchmark and background – Oct 2015-June 2016
– Literature review: articles & surveys on needs of people
living with a RD
– Meeting patient reps (meeting with NAs during last CNA;
visits to RD UK and FEDER;)
– Consulting INNOVCare partners, SPAG, team, MAPI,
Rouen University
• Quantitative Study
– Recruitment of patients – Started in January 2016
– Selection of issues & questionnaire elaboration – Mars
2016
Survey on patients and family needs -
Project progress
eurordis.org
Next steps - Timeline
06/06/2016 4
Questionnaire send out – June 2016
Data collection – June-August 2016
Analysis of data – Sept 2016
Report (overall results + results by
country) – Oct 2016
eurordis.orgeurordis.org06/06/2016 5
Key issues listed
Questionnaire• Disability & autonomy
• Impact on daily life: including limitations on every day tasks
and mobility, need for adapted transport, housing, aids/medical
devices; stress; family life; self-esteem
• Economic burden (perception and in relation to employment)
• Employment (access, maintenance, integration)
• School (in relation to consequences on employment)
• Leisure and respite (in relation to social integration & well-
being and employment of family members - respite)
• Coordination of care and navigation of the system (complexity;
need; time spent; perception of burden of care provision)
• Information and administrative procedures (time spent, access
to information, satisfaction)
eurordis.org
What is Rare Barometer Voices ? (1/2)
06/06/2016 6
• Rare Barometer Voices is a group of people living
with a rare disease who participate in EURORDIS
surveys and studies.
• The objective is to transform opinions and
experiences about topics that directly affect rare
disease patient into figures and facts to feed
EURORDIS and EURORDIS members’ advocacy
work.
eurordis.org
What is Rare Barometer Voices? (2/2)
06/06/2016 7
Patients, families, patient representatives can register
At registration participants provide useful information for future surveys (disease, gender, age …)
Covers 48 European continent countries
Registration page (eurordis.org/voices) and surveys are available in 23 EU languages
eurordis.org
eurordis.org/voices
06/06/2016 8
eurordis.org
An interactive project
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Patient organisations can use the results to raise awareness, influence policies and for funding applications
Participants can suggest topics on RareConnect
Participants are sent the results
Participants are informed about how results are used
eurordis.org06/06/2016 10
High level of data protection
• Data storage in France : online platform with high security level
• De-identified data
• Strictly restricted access, owned by EURORDIS only
• Approved by the French data protection authority (CNIL)
Scope of the survey
• No clinical studies
• Transversal topics for the rare disease community : access to medicin, diagnosis, social care…
To have strong results it is crucial that as many people living with a rare disease as possible register for Rare Barometer Voices. The credibility of the results will also depend on the number of people per category: country, disease, age…
eurordis.org
Recruitment progress in INNOVCare
countries
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1 to 50
50 to 100
100 to 200
eurordis.orgeurordis.org06/06/2016 12Council of European Federations 2015
• Full report on social and daily life needs of people living with a rare disease :
Statistical data: identification of issues and dimension
Cross country comparisons
Results per disease when possible and per EPAG grouping
Quotes on specific chalenges and experiences of patients/families
Benchmarking with other disease/with the general population
• Short results in 23 languages
Formats that will be used to present results:
• Report document– published online
• Infographics on specific issues
• Short testemonials
Study on patients’/families’ social needs
Outcomes – Your advocacy tool
eurordis.orgeurordis.org06/06/2016 13Council of European Federations 2015
Support advocacy within social policy
– Advocating about patients needs
– Promotion of the key role of health services (CEs/ENRs) in relaying
information, ensuring the link to social services (CEGRD
recommendations/RD-Action);
– Advocating for integration into social services;
– Shaping of good practices;
– Promotion of training for social services providers;
– Advocating for better integration in regards to employment;
– Preliminary information on socio-economic burden
Study on patients’/families’ social needs
Use for our social policy activities
eurordis.org
Communicating about the Rare
Barometer Voices
06/06/2016 14
• Share the dedicated webpage (eurordis.org/voices) on social media using
#RareBarometer.
• Patient organisations can download a template email to encourage people
to register:
• Watch and share the webinar
• Soon available :
Printable leaflets in 23 languages
Short video explaining Rare Barometer Voices
Link with Rare Barometer Voices registration and INNOVCare survey
eurordis.org06/06/2016 15
Thank you. Do not hesitate to
contact me if you have any
questions:
