The H-CARE Pilot Survey

What is the H-CARE Survey?

For every patient to access high-quality and cost-effective care, 24 European Reference Networks (ERNs) connect healthcare providers across Europe in virtual networks to provide the best care and treatment options for people living with rare and complex diseases. Through European Reference Networks, clinicians can access existing expert knowledge from another country on a patient’s disease.

The long term goal of the H-CARE Survey is to develop a centralised patient feedback mechanism across the 8000+ rare and complex diseases, and across the 24 European Reference Networks.


This will allow to:

  • Measure the evolution of patients’ and caregivers’ experience with the care they receive over time and across Europe;
  • Provide information in order to align strategic decisions and operational delivery of the ERNs with patients’ needs and experiences, specifically the development of healthcare pathways and treatment protocols;

while having the benefits of:

  • Avoiding duplication of efforts through pooling of resources (human, financial, tools such as software, etc.) which will result in economies of scale;
  • Ensuring robust, comparable and independent validated data and results by using the same survey methodology across ERNs;
  • Achieving sufficient survey sample size and coverage of the ERNs patient population.

Who can participate in the survey?

All patients with a rare or complex disease plus members of their families and their caregivers.

Patients living with a disease treated in one of the four European Reference Networks that initiated this pilot survey are specifically encouraged to participate: lung diseases; kidney diseases; urinal, colorectal and genital diseases; and genetic tumour risk syndromes.

Why a Pilot Survey?

The 24 European Reference Networks connect 300 hospitals and more than 900 care units across Europe: the development of a large-scale feedback mechanism can face several challenges and should be a stepwise process. This pilot study is a first step that allows to:

  • Agree on the dimensions of care that can be measured.
  • Test the possibilities to develop a scientifically validated questionnaire that captures patients’ experience with care for the over 8000 rare and complex diseases.
  • Understand how to best recruit patients and administer the survey across the 24 European Reference Networks and across countries: through social networks; through patient organisations; and on-site, in the care units of the hospitals where patients are treated.

This pilot survey was initiated by four European Reference Networks:

and is carried out via Rare Barometer, the EURORDIS-Rare Disease Europe survey initiative.

How do we measure experience of healthcare?

We first conducted a systematic literature review that included more than 130 articles and 80 scientifically validated questionnaires.
As there is no existing scale to measure rare disease patients experience of healthcare, patient representatives and clinicians involved in this pilot have selected the scientifically validated questionnaire that best suited the requirements of this project: the Patient Assessment of Care for Chronic Conditions Short Form (PACIC-S). We adapted it to design two questionnaires:

The Patient Assessment of Care for Rare and Complex Diseases
• The Caregiver Assessment of Care for Rare and Complex Diseases

To design these two questionnaires, we relied on 10 validated translations of the PACIC questionnaire (Danish, Dutch, English, Finnish, French, German, Italian, Lithuanian, Spanish, Slovakian) and we translated them into the 13 other languages of the Rare Barometer Program (Bulgarian, Czech, Greek, Croatian, Hungarian, Latvian, Norwegian, Polish, Portuguese, Romanian, Russian, Swedish, Slovenian).

More information

Page created: 04/12/2019
Page last updated: 12/02/2021
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases