Expert by Experience: Valuing Patient Engagement in Healthcare
EURORDIS-Rare Diseases Europe was established in 1997 to gather all rare diseases at European level to gain visibility and create a new social space, and emerge as a civil society community able to voice the needs and expectations of 30 million people in the 48 European countries. The organization has helped establish most of the 67 disease-specific European Federations or Informal networks. The strategy is a triptych: Patient Empowerment; Patient Engagement; Patient Advocacy. Partnership with stakeholders strengthens the patient’s voice and shapes research, policies and patient services, and the expertise of experience, patient knowledge and contribution to healthcare. In this context, 24 European Reference Networks on rare diseases were established; EURORDIS led the organisation and structuring of patient involvement into these Networks.
KeywordsEuropean Organisation for Rare Diseases, EURORDIS Patient empowerment Patient engagement Patient advocacy Rare diseases European reference networks
- Brett, J., S. Staniszewska, C. Mockford, S. Herron-Marx, J. Hughes, C. Tysall, and R. Suleman. 2014. Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations 17: 637–650. https://doi.org/10.1111/j.1369-7625.2012.00795.x.CrossRefGoogle Scholar
- Cornman, D.H., and White, C.M. 2017. Discerning the perception and impact of patients involved in evidence-based practice center key informant interviews. Agency for Healthcare Research and Quality (US), Report No.: 17-EHC032-EF. AHRQ Methods for Effective Health Care.Google Scholar
- European Union Council Recommendation on an action in the field of rare diseases. 2009. June 8. eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF.
- EURORDIS Activity Report 2017. www.eurordis.org/publication/eurordis-activity-report-2017.
- ——— Volunteer charter. www.eurordis.org/volunteering#tabs-2.
- Hallal, C., C.O. Kieling, D.L. Nunes, C.T. Ferreira, G. Peterson, S.G. Barros, C.A. Arruda, J.C. Fraga, and H.A. Goldani. 2012. Diagnosis, misdiagnosis, and associated diseases of achalasia in children and adolescents: A twelve-year single center experience. Pediatric Surgery International 28 (12): 1211–1217. https://doi.org/10.1007/s00383-012-3214-3. Epub 2012 Nov 8.CrossRefGoogle Scholar
- Rath, A., V. Salamon, S. Peixoto, V. Hivert, M. Laville, B. Segrestin, E.A.M. Neugebauer, M. Eikermann, V. Bertele, S. Garattini, J. Wetterslev, R. Banzi, J.C. Jakobsen, S. Djurisic, C. Kubiak, J. Demotes-Mainard, and C. Gluud. 2017. A systematic literature review of evidence-based clinical practice for rare diseases: What are the perceived and real barriers for improving the evidence and how can they be overcome? Trials 18 (1): 556. https://doi.org/10.1186/s13063-017-2287-7.CrossRefGoogle Scholar
- Tokhi, M., L. Comrie-Thomson, J. Davis, A. Portela, M. Chersich, and S. Luchters. 2018. Involving men to improve maternal and newborn health: A systematic review of the effectiveness of interventions. PLoS One 13 (1): e0191620. https://doi.org/10.1371/journal.pone.0191620. eCollection 2018.CrossRefGoogle Scholar