Involving patient representatives as partners in research projects
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Interview with Nicole Thiele, Vice Chair of the EFCNI Executive Board, Project Leader
1. Patient involvement: where do we come from and where do we need to go to?
Luc Zimmermann, Prof.
Involving parents in research projects asks for new roles of both patients/parents and professionals. It helps to make the research and its outcomes more meaningful, acceptable and useful to patients, and highly increases the effectiveness of the research. Patients/parents can be involved at all stages of the research process from prioritisation of questions up to dissemination of the results The shift should be to the early processes to have a greater impact. “Parents” can be parents of a recently born newborn, expert-parents or parent organisations. Patients can be involved when they become children or adults. All have an important but different role.
- Understanding why patient/parent involvement in research is useful/needed
- Where and how to involve patients/parents in research
- Patient participation versus patient involvement
- Some misconceptions about clinical trials
- The future: involvement of different patient and parent categories depending on the need
- EFCNI Position Paper “Involving parent representatives in neonatal research”
2. Overcoming barriers to patient involvement
The role and input of patients brings a different perspective to research. This specific perspective and role also brings with it various challenges to the effective involvement of patients, ranging from communication issues to unclear roles and responsibilities. Overcoming these barriers through various means, including co-creation, can empower patient representatives and provide quality input into research.
- Awareness of several barriers which can exist to effective patient involvement
- Recommendations for overcoming barriers
- Good practice examples of effectively involving patients in research
3. Towards patient partnership: Capacity building and compensation
The role of patient representatives in research projects is shifting from mere information and consultation to shared decision making and work in equal partnership. Patient partnership requires “patient experts” with a broad field of competencies and skills – from basic understanding of medical or research topics, the functioning of the health system or regulatory work to communication and negotiation skills. Compensation of the patient’s work unfortunately remains a thorny topic that requires an open discussion – for a smoother way into successful collaboration.
- Develop a common understanding about the meaning of patient partnership
- Capacity building and support is one key element for patient partnership
- Why compensation matters
4. The importance of patient representatives as partners in research projects
Livia Nagy-Bonnard, Switzerland/ Hungary, is mother of a boy born extremely preterm in 2006. The rollercoaster her family has been and is still going through led her to co-found the national Hungarian parent association MELLETTED A HELYEM and to her strong engagement within EFCNI, and further international and national networks in newborn health, but also to attend an 18 month training to become a patient expert for research projects. She explains, from her personal point of view and experiences why patient representation in research projects is important, possible challenges, and how to overcome these.
- Benefits of involving patient experts/ representatives in research projects
- Challenges encountered as patient representative in contributing to research projects as patient partner
- Recommendations supporting the engagement of patient representatives in research projects
5. The Value of Patient Representatives
Juliëtte Kamphuis was born very preterm in 1980 with 28.5 weeks and she is diagnosed with bronchopulmonary dysplasia.
She raises awareness for respiratory diseases and premature birth. Since 2009 she supports the patient voice in many research projects, healthcare-related initiatives and patient participation policies and she collaborates with national, European or worldwide organisations.
During this presentation she shares her experience, the challenges and key aspects, and she provides recommendations on how to involve parents of preterm infants and preterm born individuals as partner in your research project.
Juliëtte has an educational background in biochemistry/biotechnology. Per July 2021 she works as a clinical research officer, department neonatology, at the Wilhelmina Children’s hospital of the University Medical Center Utrecht, the Netherlands. She is a chair committee member of the European Foundation for the Care of Newborn Infants (EFCNI) initiative GLANCE-Global Alliance for Newborn Care, ambassador of the Mother and Child Center of the Sophia Children’s hospital of the Erasmus University Medical Center, and a guest lecturer NIDCAP/FINE of the Sophia NIDCAP training center.
- Have basic knowledge of the value of patient representatives and how to use their expertise
- Have basic insight in the key principles and know how to overcome the challenges to enable meaningful inclusion of the patient voice in research project
- Have received recommendations for future research projects