Patient and Public Involvement (PPI)
Public engagement and Science Education
NEURON intends to provide the framework to perform public engagement activities, empower stakeholders and enhance preparedness for possible ethical concerns.
Engaging all stakeholders of relevance (patients and civil society organisations, policy makers, regulatory bodies, administrations, industry, end users…) to the research project, at the earliest possible stage, legitimises its objectives and its scientific approach towards societal relevance and leads to better results improving scientific research.
Patient and Public Involvement (PPI) in research, is defined by INVOLVE as research carried out ‘with’ or ‘by’ patients and those who have experience of a condition, rather than ‘for’, ‘to’ or ‘about’ them.
“Patient Power and Empowerment: Mitigating Elements of Valuable Patient Participation in Healthcare Collaboratives” Minheer et al 2023
High quality PPI in research shall improve the relevance and transparency of the research and its translation into policy and practice, contributing to more effective health services and products. Whilst engagement and participation are important ways of interacting with people affected by health conditions in research, involvement is essential to ensuring research is relevant and meaningful to those with health conditions. The principles that would be followed in patient and other stakeholder engagement are: inclusiveness, adequate support of patients to facilitate meaningful engagement, flexibility, mutual respect, following co-design and co-building methodologies, appropriate timing to include different stakeholders, and describing how the involvement will be formalised within the research project. To tackle the different issues related to patient engagement in neuroscience it was included a panel discussion focused on ‘Reinforcing links between lay organisations, basic scientists, and clinicians’ (Video in AVI-format) in the last ‘ERA-NET NEURON Symposium: Together for brain research’ that was held virtually on 27th January 2021.
Engaging patients at all levels of research and research funding is thus an important vehicle to transport their views into the process. Feasibility and relevance issues may become obvious if looked from an angle that is distinct from the researchers’. NEURON will further intensify the existing cooperation with the European patient organizations, e.g. European Federation of Neurological Associations (EFNA) and Global Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN).
The ERA-NET NEURON seeks to strengthen PPI in research, specifically aiming to patient involvement in the funded projects. As it is stated in the call texts: “…applicants are expected to engage patients, their parents or carers where appropriate in the research process. Meaningful patient engagement can occur at the level of research planning, conducting research or the dissemination of research results”. Patient representatives participate as well in the preparation of the call text and also in the process of full-proposals reviewing, providing feedback on patient engagement aspects.
To pursue the goal of improving PPI in neurological research, NEURON and EFNA conducted a Workshop for lay reviewer training on April 20th/21st, 2021 and April 25th/26th, 2022 (PDF).
Furthermore, in 2021 two members of the NEURON patient reviewer board of the Joint Transnational Call for Proposals 2021 on Neurodevelopmental Disorders have joined forces to write an article to state their perspective on how the collaboration of patients and researchers can improve the outcome of scientific health research. In this patient reviewers’ commentary, the authors outline what patient involvement should entail, what the benefits are and which critical aspects exist. Please click here to read the full commentary (PDF).
As it is stated in some publications (PDF), the most common barriers to involve public as active partners in healthcare research are: discrepancy between the different points of view of scientific experts and patients/public members, identity and power related problems, lack of organisational resources, difficulty in recruiting patients and/or public representatives, not enough diversity among them, lack of training and education of both sides, patients and researchers.
To overcome these barriers the following facilitators to public participation could be followed:
- creating an organisational structure with appropriate resources,
- providing networking opportunities and training to familiarise the public with technical matters and scientific terminology,
- guidance and supporting to the participants and communicating clear the objectives and roles expected from the beginning,
- involving a group rather than single participants,
- empowering patients, to ensure an equal voice to professional and lay participants.
- integrating the patient opinions into the translational research decision-making, to ensure that the patient’s perspective is meaningful and influential in the decision process.
There are available several tools that can be used for this purpose:
Good Lay Summary Practice
The new tool to comply with Clinical Trial Regulation EU 536/2014. ECRIN contributed to the multistakeholder group of 60+ academic, industry, not-for-profit and patient organisations, jointly led by EFGCP and EFPIA, (“Roadmap Initiative for Good Lay Summary Practice”).
Please find the recommendations here:
Involve aims to stimulate and support active participation of citizens in medical and health research. INVOLVE is an NHS National Institute for Health Research advisory group that supports public involvement in health and social care research.