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 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.

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 Carer 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).

Download the Translations of the scales in 23 languages


The H-CARE Pilot Survey shows that, on average, rare disease patients rate their healthcare experience 2.5 on a scale from one to five.[1]

Based on over 3900 submissions received between December 2019 and March 2020, results of the H-CARE Pilot Survey show that people with rare diseases give their healthcare experience a medium-low rating, outline the major gaps in healthcare delivery and allow to provide recommendations for future reform.

According to the respondents, healthcare services for rare and complex conditions only occasionally consider key aspects, such as follow-up consultations and appropriate psychological and social support. The H-CARE survey findings indicate that there is still plenty of room for improvement and redesign of health and social services to meet the needs of people living with a rare or complex condition in Europe.

Moreover, the results show that patients living with a rare disease have a worse healthcare experience than other patients affected by chronic diseases. While both require multidisciplinary care and have broadly similar needs, patients with rare diseases seem to have a harder time accessing care that meets their needs.

Among the three priority areas for improvement, the respondents indicated the need for follow-up consultations, more orientation on resources and support, and psychological assistance. Timely follow-up is vital to ensure that the patient is aware of his or her diagnosis and moves forward with the prescribed treatment plan. Still to this day, many people living with a rare disease feel left alone with their concerns. Orienting patients towards community support groups, alongside adequate psychological and emotional help, emerges as a key factor in ensuring a better healthcare experience.

In order to support patients and carers, experts should also improve coordination with other doctors and provide recommendations to patients on how to manage the disease in their daily life, for instance by setting specific goals or developing disease management programmes.

"The results of this survey confirm that there is still work to be done to improve the healthcare experience of people living with a rare or complex condition. From providing appropriate psychological support and ensuring better care coordination to signposting to support groups. We invite healthcare providers, clinicians and hospital managers, and health and social care authorities to analyse the results, extract lessons, and use them to inform future service redesign and policy interventions", says Inés Hernando, ERN and Healthcare Director.

Patients treated in ERN Centres of Excellence have a better healthcare experience

The survey was also used to assess the experience of health care received in Centres of Expertise belonging to four European Reference Networks (ERN ErkNet, eUROGEN, Genturis and LUNG). The results showed that patients treated in these centres had a better healthcare experience compared to those treated in other non-expert centres. Notwithstanding a higher score, areas for improvement for Centres of Expertise that belong to an ERN remain the same as for other non-expert centres.

Based on the survey responses, EURORDIS has outlined three recommendations to improve the healthcare experience of people living with a rare or complex condition:

1.    Going beyond diagnosis and medical treatment: increase focus on follow-up after consultations, psychological support, and healthcare aspects that allow patients to manage their health in their daily life.

2.    Ensuring access to multidisciplinary and networked health care: improve access to high-quality specialised care for people living with a rare or complex condition. This includes simplifying the national referral pathways to Centres of Expertise, facilitating timely access to in-person and virtual cross-border expert advice when such expertise is not available in their home country, and promoting knowledge sharing between Centres of Expertise and other healthcare providers.

3.    Developing and implementing a questionnaire to measure the healthcare experience of patients living with a rare disease and their caregivers: contribute to setting quality standards for health care in rare and complex conditions. Such a questionnaire would need to include dimensions specific to these conditions and be flexible enough to adapt to the diversity of situations and profiles of the people living with rare diseases.

The survey report identifies these recommendations, backed with evidence-based examples from across the region, to inspire policy makers and healthcare stakeholders at EU, national and local level as they seek ways to improve the quality of care delivered to people living with a rare or complex condition in Europe.

Read the detailed publication in English: Setting standards of care quality!

Read the full graphic report in English: Improve our experience of health care!

Read the factsheet in 23 languages: H-CARE factsheet in 23 languages


[1] H-CARE obtained the score for rare disease patients’ healthcare experience by combining answers to 11 questions related to follow-up after consultations, information on treatments, care coordination, and managing patients’ health in their daily lives.

More information

Page created: 04/12/2019
Page last updated: 20/04/2021
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