External tools & resources


National coordinating center for public engagement aims to inspire higher education institutions to take action and recognize the value of public and community engagement, for long-term change.

Involve is the UK leading public participation charity in order to develop, support and campaign for new ways to involve people in decisions that affect their lives.

Patient and public involvement in research: What, why and how?

EUPATI is committed to enhancing patient engagement through patient education. 

  • Vision: improve health outcomes through the contribution of patients and patient representatives as valued stakeholders
  • Mission: provide accessible, innovative and inclusive education that empowers patients and patient representatives with the right knowledge, skills and competencies to effectively engage and partner with all other stakeholders in medicines R&D

The Action catalogue is an online decision support tool that is intended to enable researchers, policy-makers and others wanting to conduct inclusive research, to find the method best suited for their specific project needs. 

The Engage2020 Action Catalogue is an outcome of the Engage2020 project, which is funded by the European Commission (DG Researh) 

Engage 2020 – Science, society and engagement

An anthology eBook provides a short introduction to engagement in research and innovation. It forms part of Engage2020, an EU funded research project which explores methods and policies across Europe and beyond. It includes: 

  • Practical examples on why, when and how to engage the public and societal stakeholders in R&I policies and activities
  • Brief descriptions of engagement tools
  • Examples of good practice around different Grand Challenges and policy and research areas
  • Short articles from researchers, practitioners, academics and policy makers sharing their experience and expertise of public engagement

The James Lind Alliance (JLA) is a non-profit making initiative bringing patients, carers and clinicians together in JLA Priority Setting Partnerships (PSPs). The JLA PSPs identify and prioritise unanswered questions or evidence uncertainties that they agree are the most important, so that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives.  

The JLA method, described in the JLA Guidebook, is designed to change the way research funding is granted, and to raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them. 

The European Citizen Science Association (ECSA) is a membership organisation set up in 2014. 

Main goals are to increase the democratisation of science, encourage the growth of citizen science in Europe, and support the participation of the general public in research processes ⎯ across the natural sciences, social sciences, humanities, and the arts. 

Ten principles of citizen science

Relevant webpages 

Websites to use for inspiration & information

Kungliga biblioteket (KB) har av regeringen fått i uppdrag att kartlägga och analysera allmänhetens delaktighet i forskningsprocessen. Medborgarforskning nämns i uppdraget som ett exempel på interaktion mellan forskning och det omgivande samhället och en form av samskapande där olika aktörer ges inflytande i forskningsprocessen. 

Som ett led i genomförandet har KB gett föreningen Vetenskap & Allmänhet (VA) uppdraget att sammanställa en kunskapsöversikt med fokus på medborgarforskning. Översikten är tänkt att utgöra ett underlag för KB:s vidare arbete.

VAs kunskapsöversikt levererades till KB i juni 2022 och ingår som en bilaga i KB:s nyligen publicerade kartläggning Allmänhetens delaktighet i forskningsprocessen – en kartläggning och analys. Resultaten från kartläggningen kommer i sin tur att användas i arbetet med regeringsuppdraget att ta fram nationella riktlinjer för öppen vetenskap.