Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience

Orphanet J Rare Dis. 2023 Nov 1;18(1):341. doi: 10.1186/s13023-023-02951-8.


Background: Sickle cell disease (SCD) is an inherited chronic life-threatening disorder with increasing prevalence in Europe. People living with SCD in Europe mainly belong to vulnerable minorities, have a lower level of health education and suffer from isolation compared to those living with other chronic conditions. As a result, SCD patients are much less likely to partner in the design of research related to their condition and are limited in their ability to influence the research agenda. Aiming to increase the influence of patient voice in the development of SCD-related research, we set out to develop patient centered actions in the frame of International Scientific Conferences in collaboration with the ERN-EuroBloodNet, Oxford Blood Group, Annual Sickle Cell Disease and Thalassaemia Conference (ASCAT), the European Hematology Association and the British Society of Hematology.

Results: Two events were organized: a one-day research prioritization workshop and a series of education sessions based on topics chosen by SCD patients and their families. Methodology and outcomes were analyzed in terms of influence on scientific, medical and patient communities.

Conclusion: The ERN-EuroBloodNet workshops with patients at annual ASCAT conferences have provided an opportunity to enhance patient experience and empowerment in SCD in Europe, producing benefits for patients, caregivers, patient associations and health professionals. Future work should focus on delivering the research questions identified at this workshop and the opportunities to share information for patient education.

Keywords: International congress; Patient education; Patient therapeutic education; Patients workshop; Public patients involvement in Research; Sickle cell disease.

MeSH terms

  • Anemia, Sickle Cell*
  • Caregivers
  • Europe
  • Humans
  • Patient Participation*
  • Quality of Life