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.

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.

Involvement, Participation, Engagement

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.

research circle
Research circle adapted by ERA-NET NEURON from Parkinson’s UK PPI training activity; © Parkinson’s UK (Original source)

Useful tools

As it is stated in some publications, 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:

The Participatory Methods Toolkit, the Participation Compass, The Orion Open Science Co-creation menu, or the Action Catalogue, a decision support tool developed by Engage2020, an online tool that enables researchers to find the participatory methods best suited for their project needs.

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James Lind Alliance

The James Lind Alliance (JLA) promotes dialogues between patients, healthcare professionals and clinical researchers over the effectiveness and uncertainties of medical interventions and jointly identifies priorities for research (see the methodology in the JLA Guidebook).

Dutch Burns Foundation

The Dutch Burns Foundation includes patients in research agenda setting and research implementation by using the Dialogue Model (based on 5 steps: exploration, engagement, integration, programming and implementation).

Involve

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.

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Logo EnRRICH

PERARES and EnRRICH

The PERARES and EnRRICH projects strengthen public engagement in research by involving researchers and civil society organisations in the formulation of research agendas and the research process.