Research Support

Patient involvement emphasizes patients taking an active role in managing their health, making informed decisions about their care, and participating in activities that promote wellness and prevention. This can include activities such as shared decision-making with healthcare providers, adherence to treatment plans, and utilizing health information technologies for self-monitoring.

It is a specific aspect of citizen involvement, also known as Citizen Science, which involves the public actively participating in scientific research across various fields. The aim of citizen involvement is to develop better, more innovative and more relevant outcomes, and to increase societal trust in the processes and outcomes of research and innovation. Citizens are important stakeholders that can be involved both during the project design (open science practices) and during the communication of project results (outreach activities).

With increasing recognition and participation globally, including funding agencies, citizen science is emerging as a distinct discipline, underscoring the vital role of society in advancing scientific knowledge. As such, it is recommended that researchers involve citizens and/or citizen-led organizations in their projects. This can be done at various levels of involvement, from minimal to intensive, illustrating diverse engagement opportunities within citizen science initiatives.

Levels of Patient Involvement

Several models and frameworks have been developed to categorize the extent of patient involvement. The most commonly cited one categorizes patient involvement into three levels based on the extent of participation: involvement, participation and engagement.

Patient Involvement represents the deepest level of patient integration into the healthcare process. At this level, patients are active partners and collaborators, working alongside healthcare providers and researchers throughout the entire journey. They have a voice and shared decision-making power in co-designing treatment plans, healthcare policies, research studies, and overall care delivery. Patients are involved from the initial stages of conceptualizing research questions or care approaches, all the way through to the implementation and dissemination of findings. This type of engagement is preferred as it has the greatest potential for societal impact.

A step below is Patient Participation. Here, patients take part in research studies or trials as participants, actively contributing data that informs the research findings. They provide formal consent and their experiences, symptoms, and outcomes are systematically collected and analyzed by the researchers. However, patients may not necessarily have input into how the study is designed or conducted beyond being subjects of data collection.

At the lowest level is Patient Engagement. This primarily involves healthcare providers sharing information, knowledge, and research findings with patients in a one-way manner. It could include public education events, awareness campaigns, or providers informing patients about their conditions and treatment options. Patients are engaged by receiving information, but there is limited opportunity for them to provide input, collaborate, or share in decision-making at this level.

How to involve patients in your research

For any health-related project that might have an impact on patients, it might be important to involve patients or patient organizations in your project. Involved patients are actively thinking along with the researchers about the study design, organization, execution and dissemination of the results. Involving patients across various stages of the research process can improve research in multiple ways.

A grant application can be strengthened with well-founded, well-documented patient involvement in the study. This can enhance your chances of success in national and European calls. Feedback from the patient perspective can lead to new viewpoints for the study design and execution, as well as for the evaluation of results.

Citizen & Patient Involvement in EU projects

In Europe, universities, research centers, and museums play significant roles in propelling citizen science initiatives. Its primary representation, is through the European Citizen Science Association (ECSA), a non-profit organization established to foster the expansion of citizen science across the continent.

Although there is no clear EU-wide policy on citizen science, the European Commission highly recommends to involve all relevant knowledge actors (including citizens) in research projects. Citizen engagement is an Horizon Europe programme principle and operational objective that refers. As such, these practices are evaluated under Excellence and Implementation (open science practices) and in Impact (outreach activities) of Horizon Europe Proposals. Therefore, it is recommended that researchers involve citizens and/or citizen-led organizations in early stages of their projects.

Please click this link to download the infosheet for strategies to involve citizens in an EU project. You can contact the Research Grant Support for additional information.

Citizen & Patient Involvement in national projects

In the Netherlands, Dutch citizens actively participate in a diverse array of citizen science endeavors, including projects such as air quality monitoring, noise monitoring, and studying earthquakes induced by gas extraction. These initiatives often originate from grassroots efforts. While the Dutch term for "citizen science" is "Burgerwetenschap," the English term is also widely adopted.

In the past years, Charity Funds (e.g. KWF, Hartstichting, Hersenstichting, Longfonds) and NWO/ZonMw have actively involved patients in the evaluation of study protocols in applications for research funding, for studies with human subjects. As it turned out, this involvement often leads to valuable feedback for the applicants. In recent years researchers are expected to involve patients in the design and execution of the study. In particular, the Dutch National Research Agenda has presented a compilation of 140 overarching scientific questions, which have emerged from a distinctive bottom-up initiative, spearheaded by the Dutch public and numerous organizations across the Netherlands.

Researchers, also investigators in fundamental, basic research who would like to involve patients (and their family and/or caregivers) in their national research projects can find information on the ‘do’s en dont’s’ in 4 different forms of patient involvement in the brochure of ZonMw/VSBFonds ‘Een 10 voor patiëntenparticipatie’ (2013). ZonMw also offers an e-learning module in regards to Citizen Science. ZonMw encourages participation and Citizen Science, and this participation plays an important role in the assessment of grant applications. More about Patient Participation at ZonMw can be found here.

On the websites of the Dutch Heart foundation (Hartstichting) and the Queen Wilhelmina Fund (KWF) information can be found on their specific activities on the topic of patient involvement.

To embed patient involvement as a core part of our research culture, Amsterdam UMC has developed several key initiatives that support, connect, and inspire our research community.

The PIR Working Group brings together grant advisors, policy officers, and support staff from across the institution. This team coordinates and promotes patient involvement in research, supports researchers in integrating patient perspectives into their projects, raises awareness, develops practical tools and resources, and fosters a culture of meaningful engagement.Get to know our Working Group here!

Guidance and strategic input are provided by the PIR Advisory Committee (PIRAC), a group of experienced researchers from various departments. The committee works closely with the PIR Working Group to shape the direction of patient involvement in research at Amsterdam UMC. Together, they co-develop resources and training, offer feedback on institutional tools and activities, and act as ambassadors for patient involvement across the institution.

A key focus of their collaboration is the creation of a vision document for Patient Involvement in Research at Amsterdam UMC. This document will articulate our shared goals, principles, and ambitions for embedding patient involvement as a standard and impactful practice at Amsterdam UMC. It will serve as a guiding framework for researchers, staff, and partners.

To further strengthen our community, the PIR Researcher Network provides a dedicated space for Amsterdam UMC researchers interested in patient involvement. By joining the network, members receive notifications about both internal and external activities, including events, training sessions, and grant opportunities. The network also offers opportunities to connect and collaborate through informal meet-ups, webinars, and lunch talks organized by the PIR Working Group. Amsterdam UMC researchers can register for the network here.

We are currently developing a Researcher Database to help connect colleagues across departments who are practicing or exploring patient involvement. This internal resource will make the growing PIR community more visible and accessible, and will soon be available via SharePoint for Amsterdam UMC researchers.

A wide range of resources and tools—including infosheets, guides, templates, and curated overviews of external courses and training—are available on our PIR Sharepoint page to support Amsterdam UMC researchers at every stage of their projects.

The PIR Working Group regularly organizes activities and events, including thematic sessions, hands-on training, and webinars. Amsterdam UMC researchers can stay informed about these opportunities by registering for our network.

We also collaborate with different initiatives to strengthen patient engagement across Amsterdam UMC and beyond. Within our own institution, we work closely with groups dedicated to amplifying the patient voice in both clinical care and education, ensuring that patient perspectives are embedded not only in research but across all three pillars of Amsterdam UMC.

We have also developed a strong partnership with PPI Ignite, with whom we have co-organized several activities, including a one-day training for PhD students focused on patient and public involvement. These collaborations allow us to share expertise, develop new training opportunities, and inspire a culture of engagement among early-career researchers.

Additionally, we connect with support structures for patient involvement at other Dutch UMCs. Through this national network, we focus on peer learning and the exchange of experiences, sharing tools, templates, and guidelines to harmonize support practices.

There are several frameworks and tools available to help researchers think and plan for meaningful patient involvement throughout the research process. Specifically, these tools can help researchers evaluate the quality of engagement, guide the level and methods of involvement, foster partnerships, and improve reporting practices.

Among these models is the “Involvement Matrix” by Kenniscentrum Revalidatiegeneeskunde Utrecht. This matrix is a tool that was developed to help researchers in the involvement of patients in their projects and in research, offering a solid foundation for designing inclusive and participatory approaches. For more detailed information on how to use this matrix, please contact the Research Grant Support for additional infosheets on patient involvement.

National resources

Local and national initiatives to help researchers engage with patients in their research, in the form of toolkits as well as courses.

• Kickstarter patient participation for researchers - Participatiekompas (in Dutch).
• School for Participation (in Dutch). The School for Participation is an initiative of the Participation and Diversity Section of the Ethics, Law and Medical Humanities Department of Amsterdam UMC. The section is a forerunner in the field of participatory action research and participation in research, care and policy.
• Involvement of young experts by experience in research. The Centre of Excellence for Rehabilitation Medicine, a collaboration between University Medical Centre Utrecht and Rehabilitation Centre De Hoogstraat (KCRU) and ZonMw have taken first steps in the realisation of an infrastructure to systematically involve families in all aspects and stages of research, inspired by the PenCRU Family Faculty in Exeter. The document serves as a background resource providing insights, literature study findings, and guidance for those interested in involving youth in research.
• National Program Open Science (NPOS): brings together national stakeholders in the Netherlands with the aim of coordinating the transition to Open Science and to disseminate its importance. In their site there is a lot of information on events at national level.
• The Student Initiative Open Science (SIOS): A student-lead initiative to promote open science within students at the early stages of their careers.

Comprehensive resources

• The Patient Engagement Management Suite (PEM Suite), a hub of co-created tools, resources and practices to help stakeholders adopt patient engagement in a systematic, efficient and meaningful way. In particular, their collection of “How to Guidelines”, aims to provide researchers with specific support in their patient engagement efforts, on key activities across the medicine development lifecycle. Perhaps the most relevant for Amsterdam UMC researchers, is the guide “Patient Engagement in Early Discovery and Preclinical Research”, cocreated with EATRIS. This is a must-read for any researcher interested in engaging patients in their research. (Download the guide here).

• Patient Engagement Toolbox launched by PARADIGM, an Innovative Medicines Initiative (IMI) Joint Undertaking 2, that received support from Horizon2020. This Patient Engagement toolbox brings together in one place all the project’s recommendations, tools and relevant background information to make patient engagement in medicines development easier for all.

• In addition, you might want to check the newly developed Patient engagement Resource Center, which is a repository of selected relevant public resources to help researchers understand the basics of patient engagement, and guide them through the different phases of patient engagement: from planning to conducting and evaluating.

• How to Improve Patient Engagement in Medicines Research and Development. This article introduces a practical roadmap for patient involvement (PI) in medicines research and development (R&D), addressing the lack of structure and consistency in existing PI initiatives. It emphasizes the importance of formal documentation of PI activities and offers specific opportunities for PI across the stages of the medicines R&D life cycle, backed by concrete examples. Researchers would find this article valuable as it provides a comprehensive guide to enhance PI implementation, fostering collaboration and systematic approaches in medicines R&D.

• The Patient Centered Outcomes Research Institute (PCORI) has developed several resources for researchers to help them engage with patients in their research projects. Specifically, these resources might be extremely useful:

  1. Engaging Stakeholders in your team
  2. Working Together as a Multi-stakeholder Team
  3. Budgeting for Engagement Activities

Resources at the European level

• For specific guidance on how to involve patient organizations in the Ethical review of Clinical Trials please refer to this publication.

• Briefing Paper on Citizen Science by Science Europe. This briefing paper looks in detail at the evolution of citizen science and citizen science policy, provides examples of initiatives from around the world, and considers the future of the activity.

• If you are involved in an IHI project, please refer to this document on Guidance for Patient Engagement for Industry-Led Research.

• Briefing notes for researchers | INVOLVE. The briefing notes outline various methods of involving the public in research, offering guidance on planning, resourcing, and supporting public involvement in your research endeavors.

Amsterdam UMC researchers can access our internal SharePoint subpages on Events and Grants for more information. In addition, Amsterdam UMC researchers interested in being kept up to date with specific PIR events we recommend signing up for mailing list. This mailing list does not send a surplus of emails. Register here.

Amsterdam UMC researchers can access our internal SharePoint subpages on Courses and Trainings for more information. In addition, Amsterdam UMC researchers interested in being kept up to date with specific PIR courses or trainings we recommend signing up for mailing list. This mailing list does not send a surplus of emails. Register here.