10 July 2015
- Healthcare, - Medicines

The involvement of patients in research projects is often limited to the participation in clinical trials or other forms of research where patients provide samples. To overcome this common limitation, U-BIOPRED, a project that aims to identify different sub-types (known as phenotypes) of severe asthma, established a Patient Input Platform (PIP) to channel the patients’ perspective, support and insight into the project’s research and dissemination processes, to ensure that patients’ experiences and needs are fully taken into account. The members of the PIP were recruited through the Dutch Lung Foundation and Asthma UK’s networks and their work has been coordinated by the European Federation of Allergies and Airways Diseases Patients’ Associations (EFA) and the European Lung Foundation (ELF).

The experience of the PIP resulted extremely positive for both researchers and patients and has been used as an example for other European projects. After a six years contribution to U-BIOPRED activities, the PIP has published a paper “From tokenism to meaningful engagement: best practices in patient involvement in an EU project” with recommendations based on the role and achievements of patient involvement in U-BIOPRED. The paper identifies five key principles for the success of patient involvement:

  1. Involve early: patient input is most impactful in the project formation phase. Patients in U-BIOPRED contributed to the development of the project proposal and work plan. The PIP contributed since the beginning in preparing documents that could be understood by the general public and helped to design the study visit and to recruit study participants. As a result, the participant withdrawal was lower than other projects and study participants where constantly updated on the study progress.
  2. Involve deeply: the more patients are involved in the day-to-day activities of the project, and the more they are informed about its progress, the more they can understand, contribute and positively impact the outcomes. PIP members took part in the research working groups and regular teleconferences and their perception was incorporated into decision-making and issue resolution means.
  3. Have patients’ feedback of project progress. PIP’s voice motivated project members to bring the project forward despite moments of difficulties.
  4. Include patients in dissemination. PIP members acted as reviewers of dissemination materials for the general public and produced lay summaries of all project publications; they have also acted as speakers in workshops and symposia in international conferences and raised awareness about U-BIOPRED through their personal social media accounts.
  5. Patients convey their own story: the story of a patient provides powerful inspiration.  

The PIP experience has also helped highlighting barriers and difficulties, such as (1) language and adequate representation, (2) travel capacity, (3) overlapping job or domestic commitments, (4) duration of commitments, (5) lack of knowledge on specific topics, and (6) effective collaboration with other project members.

Overall, the outstanding outcomes of the patient involvement in U-BIOPRED and the knowledge produced by the PIP, represent a model that can be replicated in other projects or research initiatives. For these reasons, EFA will explore opportunities to further develop and expand the role and work of the PIP.

The full PIP paper is accessible here.

For more information about the IMI-funded U-BIOPRED project, please visit our dedicated page

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